Our Family =0)

2011-11-24T15:38:00.003-05:00

Happy Thanksgiving!!!

Thankful

2011-11-20T22:45:00.004-05:00

I am writing this post with a bit of a heavy heart . . . and, yet, I'm still not sure if that's how I would put it.

Isaiah's hospital visit has been a month ago already. It seems like it was last week, yet when I think about the tests that were done the day we left, it has been an eternity. Friday, the tests came back. The doctor called and said that he would like to see Isaiah before his next appointment (which was scheduled for January 9th). Initially, he said that the 14th or 15th of December would be good. Then he paused and said, "no, sooner - after Thanksgiving. December 1st?" So, December 1st it is. I know that's just a little over a week away, but it seems like another eternity to wait.

I don't have any details, other than he mentioned that we need to see another doctor, but it will all be discussed at the appointment. I know we have had tests like these done before . . . serious ones . . . but none have ever been discussed like this before - there is a bit of urgency with this one. We have always been given results over the phone or at least a portion of the results. We have waited for the doctor to be paged, waited for a nurse to call us back, an appointment rescheduled to a later date to accommodate the head doctor's schedule, but never an appointment rescheduled for an earlier appointment. The doctor even sounded shaken. It's a bit unnerving, to say the least.

So, why did I name this post "Thankful?" Simply because I'm thankful. There is so much to be thankful for. I'm thankful they didn't schedule the appointment for this week. I'm thankful that the news isn't so bad that we had to make the 3-hour trip over there to receive some kind of bad news before Thanksgiving. I'm thankful that we can spend Thanksgiving here at home and not in a hospital. I'm thankful that God is still in control of whatever is going on with Isaiah's little body, even when it may seem that He may have taken His eye off the situation for a moment. I'm thankful that He never takes His eye off a situation - He never leaves us nor forgets us. I'm thankful that whatever news the doctors may have for us in St. Pete, that God is still our healer, our comforter, our peace, our strength, our joy. I'm also thankful that God is our strong tower, our refuge, and our sanity. I'm thankful for a loving family and for encouraging friends. I'm thankful for such a wonderful little boy who brings so much joy and so much inspiration - I'm thankful for every moment that I have with him.

As always, I will write more when I know more. For right now, however, I have to prepare for Thanksgiving day - there's a lot to do in a little bit of time. =0) We're going to have dinner in our home . . . and then, we get to put up Christmas lights . . . and . . . our tree!!!!! =0) Can you tell that this is my most favorite time of year??? Yes, we are already getting in the mood for Christmas - we are already listening to Christmas music and watching Christmas movies. =0) Hey, c'mon - it is, after all, the most wonderful time of the year! =0)

Thank You . . .

2011-11-11T11:11:00.001-05:00

. . . to all who have served and are serving in our Nation's military - and especially to those who have lost their lives. You are not forgotten for your sacrifices to bring freedom and peace to the rest of us. May God continue to bless and watch over you.

Thank you, Uncle Bob, Uncle Raymond, Uncle Jerry (Uncle Cherry) :0), Uncle Jim, Uncle June, Uncle Rob, Uncle Soloman, Ronnie, Aldith, Travis, Al and many more.

"Greater love has no one than this: to lay his life down for a friend." (John 15:13).

Testing, testing . . .

2011-11-07T21:04:00.002-05:00

It took me a bit to sit down and actually write this post; not because it was necessarily difficult, but because I just haven't found the time. =0}

Anyway, Isaiah spent the week in the hospital last month (October 3rd - October 6th) with a stay-over at the Ronald McDonald house Thursday evening (the 6th). No worries - it wasn't because Isaiah had another reaction, but it was because Isaiah's doctor wanted to observe him and run some tests (basically, it was what I had written about in my last post).

While I was hoping for an answer as to why Isaiah's reactions are so often and severe, there were no answers. He ended up having a small reaction, which ended the observation period and gave us a discharge from the hospital (his doctors - he had three - were trying to find a way to keep him). Since he had to be given meds to stop the reaction, the observation without meds was over . . . he made it less than 3 days off of meds. =0( This reaction wasn't as bad as it could have been, but without intervention, it would have been anaphylaxis (his lips and tongue were swelling, his throat was itching, he had a headache, a stomach ache, was gagging, he was flushed, and he had those lovely red spots).

Other than that, our hospital stay was an adventure where Isaiah was totally spoiled! =0) The activity cart came by Isaiah's room at least twice a day, but made it around more like three times a day. Every time the cart stopped by, Isaiah got something - a large board game, painting activities, a pillowcase, a toy, something . . . and the RMcD house gave him a large stuffed bear ("Teddy"). He could also order icees (which, when they're safe for him, are a HUGE treat for him). Yes, he had an icee for every meal! =0) On top of that, he had a 47" HD plasma screen TV (complete with cable) that also had movies, the Internet, and games. Mommy and Nai-Nai also had a TV, but it was more or less a 17 " screen with cable (no, mommies weren't excluded from the spoiling - I was given hot coffee and breakfast every morning). =0) By the time we left, we had a few extra bags to carry to the car. =0)

They also had an activity time where the kiddos could leave their rooms to go to the Children's Auditorium, if they were allowed/able to. While there, children could play the piano, play video games, shoot some pool, paint/draw, or play with various toys. They even planned a bingo and trivia time where the kiddos could win prizes - even the kiddos who weren't able to leave their rooms were able to play, thanks to their TVs.

Then, there was also music therapy, an awesome play room with a gorgeous view and a jukebox, and a special visitor. Yes, Isaiah got to meet . . . Ronald McDonald! =0) I don't know if Isaiah really knows who he is, but he was still excited to see him. =0) Ronald also brought Isaiah a toy

- they really go out for these kiddos. Then, there is the outdoor pirate ship and exercise time (Isaiah didn't get to participate in that one because of the heat).

In some ways, the hospital tried to make things as fun as possible to make the stay more of a vacation than a hospital stay . . . but there are still the IVs, the monitors, and the looks of pain and despair on little faces. There were so many heartbreaking stories - neighbors to Isaiah's room, to be more precise. Our stay on 8 South will not soon be forgotten.

As far as things with Isaiah go, his heart rate bounced somewhere between 56 and 148. Yeah, a bit scary. The alarm was difficult to get used to, but it would scare him when his heart rate would get low, which would make it beat a bit faster (usually around 70/80). Basically, I was told that he has an irregular heart beat, but it may just be normal for him. However, it never really acted up for them - he becomes very tired and pale when it acts up.

As far as the testing, the tests earlier in the week came back normal or the same as they have been (his eosinophils stayed the same and are still very high and some of his allergies have actually gotten worse - corn and dust, to be exact). He had more labs drawn before we were discharged Thursday evening (yes, evening . . . 7:30 to be exact). Hopefully, we will get those results sometime soon, but we're not sure when. The doctors are looking for a rare autoimmune disorder, so the labs had to be sent to a lab where the tests could actually be done - they were sent to a Jewish lab somewhere here in the states.

Just this past week, Isaiah had nerve testing done - last Tuesday. He had both nerve tests done: an electromyogram (EMG) and a nerve conduction velocity test (NCV). I am very proud of Isaiah and completely amazed at how well he did. Not only did he have to stay still (thank you, i-Pod), but he also had to stay still through all of the shocks. He didn't cry at all. He didn't even make a noise, apart from a small "ow" with the very last shock (nerve conduction tests use electrical shocks to test nerves, just in case you were wondering . . . and yes, they can be very painful, especially in the more sensitive areas). The doctor initially thought we wouldn't be able to do the entire test on Isaiah, however, Isaiah made it through all of it! The doctor smile and told us that he has had grown men jump, cry, scream, and threaten him because of these tests - he was impressed by Isaiah's willingness to just lay there and take whatever the test threw at him.

We were given the test results for the NCV and EMG. It looks like Isaiah has neuropathy. It's not severe, but it's definitely there. What does that mean? I don't know. We will have to wait and see Isaiah's regular neurologist to figure out what this means for him. What I do know, though, is that Isaiah's regular neuro seems to think that Isaiah does not have a minor form of CP, but something else (sheesh, is this some sort of a repetitive response???). Since Isaiah has no reflexes/hyporeflexia (except for a small bit in his ankles), CP is not causing the muscle and tendon tightness Isaiah is having (CP causes hyperreflexia/exaggerated reflexes). So . . . is all of this connected to everything Isaiah is going through???? No clue. Maybe the tests the allergists ran in the hospital will give us more information . . . or maybe the neuro will have an idea. We'll have to wait and see, as usual.

Since our trip to the hospital, Isaiah's body is finding it difficult to readjust (Isaiah had to be off a few meds for one of the tests). He has had weekly episodes, though we haven't had to use the Epi with these reactions. These are just the usual masto reactions - tummy pain, leg pain, nausea, vomiting, flushing, itching, mood swings, the red dots, swelling . . . I'm beginning to wonder if this is our new "normal". I surely hope not - I hate seeing him go through all of this. He's such a trooper, though, and manages to smile through it all.

I know all of this seems so overwhelming, but it really isn't. There is a lot going on, but it's nothing all that unusal for our household - it's our "normal" ("normal" just needs to be readjusted every once in a while). =0) It's not depressing, though it can be frustrating at times. Honestly, we just do what we have to and take one step at a time - as my mom says, we just live like we're supposed to . . . are all these things really supposed to bother us? There's no time to sit and think about the "what if's" or "if only's". From the outside, it looks like our life is just one glob of chaos. However, it's not that way at all . . . I can tell you, I would have no idea what to do with myself if things weren't the way they are! =0)

Even in the roughest times - the times where Isaiah is going through a reaction of some kind - it's comforting to know that in all that we are going through, God has never left our side and that everything happening is within His control. He's not going to leave us to deal with the uncertainties on our own - He's right here with us and He understands when things are frustrating and painful for us. I can't give you an answer if God had all this planned for us - trials and all - but I can say that He's not allowing us to go through this for nothing. I know that there is something in store, a reason why Isaiah and my dad (and my mom and I) are going through this . . . even though we don't know what that is. =0) There is actually a little peace in not knowing why . . . I may not want to know! =0)

Anyway, I will keep you posted as I hear back from the lab/labs and doctors. I am hoping that the tests will come back this week . . . I'm trying really hard not to be the psycho mom that calls daily for test results! ;0)

God is good!

My Dad . . .

2011-11-05T17:53:00.000-04:00

I know you are wondering about my dad . . .

Things with him have been going okay - not great, but okay. He isn't feeling his best and hasn't been able to mow the lawn for himself for a few months now (my nephew steps in and helps out). He is in quite a bit of pain and has also been having nose bleeds (one of the symptoms of Waldenstrom's). As far as lab work, his labs are saying that the disease is progressing, he has stage two chronic kidney failure, and he was just diagnosed with diabetes. It's so frustrating to see him go through all of this - especially when he becomes frustrated because he can't do what he wants when he wants . . . or forgets what he's doing altogether.

On the memory front . . . he gets quite confused at times. He gets lost in town and so he rarely goes anywhere unless he is with my mom or myself (and we drive most of the time). He doesn't like to do too much by himself and won't do too much without my mom by his side. It's kind of cute, but at the same time, so uncharacteristic of him . . . and it drives my mom nuts! =0)

He sleeps a lot, but does try to stay busy - it's how he ignores his pain. He waters and cares for his lawn several times a day (boy, I hope nobody from the water division is reading this). ;0) By the way, you're not supposed to water your lawn daily in FL. Oh well, I'd like to see one of the officials explain that to my dad. =0) He enjoys spending time with the birds and squirrels - he has named and recognizes the majority of the squirrels that visit our bird feeders . . . or squirrel feeders (my dad built feeders and houses just for the squirrels). =0) He also spends time with Isaiah - he loves getting Isaiah to say funny phrases to us.

Dad's moods are changing, too. He's not as talkative or friendly. Not that he's mean, he just doesn't talk. When we try to talk to him, he is very short and seems to stare off into the distance at times. Sometimes, it's because he can't hear very well. Other times, he is in his own little world. Much to my chagrin (wink-wink), he loves watching his blue grass/country shows. Insert shivers here - two types of music I cannot stand! =0) However, in describing my dad's personality, you cannot leave his love for those types of music out. It's totally part of who he is.

At times, he feels alone and forgotten - my dad thrived on being needed and being useful. Since he can't hear well, he feels cut-off from conversation and is afraid of talking because he doesn't want to talk to loudly or doesn't want to misunderstand the conversation - it embarrasses him. There are times where he questions his relationship with God - has God forgotten him or is he being punished? I know that he knows the answer to those questions, but it still bothers him. Going to church, for him, has been rough - he can't hear what's being said, he's no longer needed or feels useful, and he doesn't feel comfortable talking or singing (my dad used to love to sing). I wish I could make it all better for him or help him find a sense of peace and comfort in this time in his life.

Thank you for your continued prayers for my dad - he needs them! He is frustrated and scared, though he wouldn't dare tell you - that's just my dad. He is in a lot of pain, which won't get any better without your prayers. There are no pain medications that will touch the pain he experiences - he has had too much nerve damage and cannot take some of the meds that barely help him because of side effects. I know God is listening to him and trying to bring comfort and peace - we can see that, at times. My dad knows, too . . . Please continue to pray for healing, strength, comfort, and peace . . . and for a renewed sense of joy, purpose, and meaningfulness for my dad.

Blessings

Wow, has it been that long???

2011-09-28T20:46:00.004-04:00

Could it really be that my last post was in JULY?!? =0)

Just because I haven't posted, it doesn't mean that we haven't had much going on. In fact, for those of you who don't get to see posts on Facebook, things have been crazy . . . especially for the last 3 weeks.

Isaiah has had several bad days - more bad days than good, to be exact. Of course, there were three days that were horrible. Beginning three weeks ago, Isaiah's allergist from St. Pete called to discuss a few things . . . one of them being that she was concerned about Isaiah's counts increasing and the fact that the insurances are having issues with all of the meds Isaiah is on (basically, they don't want to cover the meds). She has been doing a lot of research concerning Isaiah and thought that it might be a good idea to do some testing . . . this testing would require Isaiah to be off meds for a few days to get an accurate count. Now, the test is a simple test involving a 24-hour urine sample . . . no biggie, right? Putting ASD aside, the no meds thing is scary and dangerous for Isaiah. Just to make the insurance happy, though, I agreed to the test. So, off of meds Isaiah went . . .

IT WAS AWFUL! The first day wasn't so bad . . . the second was worse than the first, but not too bad, either. The third day, however, brought on hives, flushing, pain, lack of appetite and nausea . . . basically, all of the symptoms associated with masto and allergies. By Friday, Isaiah was on the sofa completely sacked out and pale with an irregular heartbeat. So, off to the hospital we went. He was okay, but not great. He actually said he was hurting. His heart rate was high, but his blood pressure was stable and he seemed to be breathing okay. We ended up leaving the hospital with a new pink pan in hand and Zofran, determined NOT to use the Epi or any other antihistamine so that we could get through this test . . . however, Isaiah had begun vomiting (thanks to Zofran, though, the vomiting was subdued).

By Sunday (the beginning of the 24-hour test), Isaiah was feeling awful. He complained about an itchy throat and pain and carried the pink pan around with him. I knew something awful was going to happen, but I was hoping we could get through the test without having to intervene with meds (which would ruin the test). Well, it didn't happen. Sunday evening, Isaiah went into another episode of anaphylaxis. He was weak (he couldn't stand), he was swelling, flushed (red), screaming that has throat was itching (while trying to put his hands in his mouth to scratch), gagging . . . and then he turned blue. AGH! So, Epi Pen #1 was given . . . the adult-dose Epi. Within 5 minutes, Isaiah was wired.

When the ambulance arrived, they began to assess him - tachycardia, BP was okay, O2 sats were a smidge low. So, they gave him oxygen and we were on our way to the ER. In mid-transport, Isaiah began spacing out, again. He wasn't making any sense at all and then just stopped talking. He turned bright red, broke out in hives . . . everywhere . . . and then began having trouble breathing, again. His O2 sats dropped into the 80s (not bad, but not so good, either) and yet another Epi was given.

At the hospital, he was placed on monitors and given an IV . . . the usual. He was still covered with hives, red, very swollen (he couldn't close his mouth) and still on oxygen. He looked awful. He wasn't talking anymore, either. I felt so bad for him . . . he was so itchy and achy. His heart rate was all over the place - usually staying between 143 and 60. Yes, he was setting off alarms with that low number.

Oh, and there were those lovely red spots (the spots I like to call disco-light spots).

After Isaiah received all of his meds, his O2 sats stabilized, and his heart rate issues settled down, we were discharged. The test was messed up, so there won't be any results from it (though we did submit it to the lab).

The following week, things were still going crazy for Isaiah. He was back on his meds the very next morning along with a very high dose of Prednisone, so one would think he would have eaten everything in sight . . . no such luck, but he did have his appetite back (sort-of). =0} He was doing the same things he did while off meds (random hives, flushing, pain . . .).

Then, the following Sunday, it happened AGAIN. Itchy throat, swelling, pain, irregular heart beats, abnormal BP, and he turned blue . . . again. So another Epi and we were off to the ER. No steroids were given this time, since he had just come off the steroids that Friday. So, an IV and a few hours of observation and we were out the door. I must say, this episode wasn't as bad as the previous week's, but still. Poor kiddo! Three Epis in a little over a week!

His allergist called, very concerned, and said that she wants to admit him to the hospital for observation in the very near future . . . for at least 72 hours. Then, she said that if he has another episode before he is admitted in St. Pete, he will be transported from our local ER to All Children's.

Sorry, if I'm rambling . . . a lot of info. to share at one time.

Basically, the concern is the amount of times Isaiah has anaphylaxed (yes, my child has made that word a verb) over his lifetime and the amount of times he had to receive the Epi Pen (epinephrine, or adrenaline). He has had the Epi close to 30 times in his 6 years of life . . . that's a lot. They were all necessary, that's not in question. What is in question is what it has done to him, if anything . . . we're hoping that it hasn't. Epinephrine can cause heart damage and his heart is having problems handling reactions and seems to still be reacting to all of this. He is still having issues with a high heart rate that isn't steady - it beats quickly and slows suddenly, then speeds back up. It's a roller coaster of a heart beat and it totally scares me. This is new territory and I don't like it at all. He has been pale with those dark-circled eyes and definitely not his normal energetic self. Even today, he stayed on the sofa, "napping" as he calls it. He has been carrying around that pink pan saying his tummy hurts (VERY unusual for him, as he usually doesn't tell us about pain) and won't even finish his favorite foods. He hasn't lost weight (thankfully), but he just doesn't feel well, either. He gets so pale. He even tires out at dance and gymnastics - his instructors have noticed and allow him to take breaks (HE NEVER TAKES BREAKS!!!!).

As unusual as all of this is for us (especially, the length of time these symptoms have gone on), I know God has it all in His hands. I'm scared, but only because I don't want to see my son go through this, not because I don't trust what God has planned. I still hear that song every day in my head that talks about His blessings in rain drops and His healing coming through tears. He is still in control and still just as mighty as when everything is just peachy for us. He is the same - He is our constant and that brings me peace. He's not going to let Isaiah walk through all of this for nothing, and we're surely not going to walk it alone.

I wish Isaiah could catch a break, though. He misses out on so much. I would love, for once, to take him to the beach or the park during the summer or just go to the zoo. I would love to have an ice cream party or go to the movie theater to watch a movie before it comes out on DVD . . . before the movie is spoiled by someone else who saw it before us.

In all of that, though, there are things we do to have similar experiences. For movies, we buy it when it comes out. Expensive, yes . . . but well worth it. We pop popcorn and sit in front of the TV . . . lights on, because he hates the dark. =0) We occasionally make our own ice cream from rice milk, go to the beach when it cools down (he hates sand and he's afraid of the ocean, but it's still a nice experience and there are fewer people), and the park . . . well, we eventually get there, too . . . sometimes. =0} We have snuggle time and we play Wii or Play Station II together . . . and play lots of Angry Birds. We also have story time together and we make things to decorate the house.

Well, I will keep you posted on the happenings when he is admitted - we're still working out the details and making sure all the doctors and nurses caring for Isaiah are well-informed. I believe there will even be a few extra doctors (specialists) who will be called to give their advice and recommendations. For now . . . I have to get ready to go to St. Pete. =0} (Trust me, I will keep you posted with pictures) =0)

I Heart Faces Photo Challenge: Water

2011-07-26T13:57:00.006-04:00

Yup, I'm trying it again. =0) I Heart Faces has another photo challenge (they have one every week, I just don't always enter them). I love taking pictures, and Isaiah just so happens to be my favorite subject! =0)

This week's challenge was Water, since it's summer and all. =0) I love taking pictures of Isaiah when he's swimming - I can get candid shots with him smiling . . . genuinely smiling. =0) He seems to really come alive when he's swimming, so . . . I get lots of cute pictures.

I have to admit, this photo was taken while I was doing a no-no: I took my camera into the pool. YIKES! No worries, I didn't drop it and it didn't even get a drop of water on it . . . trust me, I was holding it so tightly I think I left finger prints in the plastic! ;0)

Anyway, Isaiah was in his own little world when I got this shot - he didn't even know I had taken it. I just love candid photos!

God is Awesome

2011-07-23T18:49:00.008-04:00

I wasn't sure how to begin this post. I am really not even sure I can put all of my thoughts into words to write this post. All I know I can say is that God is amazing and I'm thankful for His blessings.

"Everyone needs an Isaiah in their lives to experience God's greatness," that's what my mom keeps saying since a few days ago, before we received the bad news. It's true. While God can show us His greatness in all that brings happiness and joy, He also show us His greatness in what brings us pain.

Isaiah had another appointment yesterday with the AIR Clinic. Even though Isaiah's doctor had just returned from maternity leave, still glowing 3 months after the birth of her daughter, the appointment was . . . heavy is all I can think of to describe it. She handed us a copy of Isaiah's most recent labs and with tears in her eyes told us that his IgE (Immunoglobulin E, the antibodies your body produces in response to something it views as a threat to your body) has increased. Again. It had increased by over 500 "points" and is now nearing 3,000 - his allergies have actually gotten worse. While it may not sound all that bad, she also said that given his age and the history of his labs, medically speaking, Isaiah will never outgrow his allergies. What little hope we had been given from the doctors has been taken away. His eosinophils (another way to measure your body's response to an allergen) were not included in the RAST testing (the blood test for allergies) this time, so we do not know where they are at this point . . . that test will come soon, though.

She reminded us that Isaiah is on all the medications that he can possibly be on and that all we can do is increase the dosages. She also mentioned that with the insurance changes that have been occurring recently, many of Isaiah's meds may not be covered in the near future - we have already experienced some issues with this, but have found loopholes to keep things covered.

One med that has helped manage symptoms for Isaiah was Xyzal - it is only covered by one of our insurances . . . and it is only covered once a year. Isaiah needs to take it twice a day, every day.

There were no talks about removing meds, just increasing some here and there because of symptoms Isaiah is exhibiting (one of them being covered in an itchy rash, again - most likely eczema). Oh, yeah, then we also switched one of the topicals to try and control the rashes on his body . . . the one that we can use on his face still works (it's steroid-free, so it's safer to use on his face).

While I sort-of expected to hear that Isaiah's IgE levels had not decreased that much, I definitely was not expecting to hear that they had increased. Although, I had one of those eerie feelings in the pit of my stomach, I still hoped for a large decrease.

I could go on and on about the things my son will not experience in this life without God's healing, but I really don't even want to think about it. It does make me think about what all of us, not in Isaiah's shoes, take for granted (what I used to take for granted before Isaiah). I could easily list them; I won't lie, the thoughts have wandered through my mind. But I just can't go there - it hurts and it serves no purpose except to make that pain worse.

I am thankful that our hope doesn't exist in the doctors, their words, or knowledge, but in the hope we can only find in God. I am thankful for such an amazing little man who can still smile and isn't missing a thing in this life - bubble or no bubble. He is oblivious in many ways and, yet, seems to understand that he's different . . . he even prefers what makes him different. His rigidity for keeping things familiar is actually a blessing - he doesn't complain that he can't have that cake, cookie, puppy . . . by the way, he HATES dogs . . . well, pretty much any animal that moves and makes a noise. =0)

Through his joy in his everyday life, you can see God's hand on him. Whatever God decides to do with Isaiah - heal him here or in heaven - one thing is for sure: God is amazing. Through Isaiah, God has touched so many people with his smile, giggles, and interesting perspectives. His quick wit and his charm always bring a smile to my face, not to mention laughter. He has a way of saying things that can make a rough day seem brighter and loves to make you laugh - though, sometimes, it's quite by accident.

He makes me smile, brightens my day, reminds me to be thankful and mindful, makes me realize how grateful I should be, and encourages me to be brave . . . and trusting. Through all of Isaiah's trials, he remains the same child - bubbly and unaware that life can be different. Of course, he gets the grumpies . . . but his joyful times far outweigh those moments. Sleepy or no, Isaiah smiles . . . and has giggle fits. I forgot to mention that he is quite spontaneous and can be quite random.

As I was writing this, he came running into the room, stripped, then streaked with his giggly self . . . in front of the open-curtain windows while our next door neighbor stood outside. In his defense, Ye-Ye had just sprayed him with a hose and so he was wet. =0) Ehem. Yes, I did stop writing to clothe my child, and no, he is not generally the kind to de-clothe himself. =0)

No matter what may lie ahead for Isaiah and for us as a family, I have hope that God holds all the answers, cures, and treatments - He sees the "big picture" even if I can't. He knows the beginning, middle, and ending of our journey. He will carry us through all of this and provide what we need and I trust Him . . . even if the places He brings us through are uncomfortable and painful. I know that God is working in it all and He has a purpose - "in all things God works for the good of those who love Him, who have been called according to His purpose" (Romans 8:28) - and that He has a plan - "for I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future" (Jeremiah 29:11). There is a reason and a purpose, even though the journey may be painful, difficult, or frustrating - God never guaranteed us a painless and easy-peasy life here on earth, He guaranteed He wouldn't leave us alone in our pain.

There is a song that has been playing on the radio almost every time I get in the car. That song actually began to speak to me. I can't help but tear up when I hear it because sometimes God's answer to us is not a quick healing right in front of our eyes, but something that takes a little longer . . . or a lot longer . . . sometimes, it's something we don't even see. Just because things aren't quite what we want them to be when we want them to be doesn't mean that we're praying incorrectly or lacking in faith. It doesn't mean that we're doing something wrong. I can't begin to answer any questions as to why other than God is God and He knows the reason/reasons. He brings blessings to us even in our pain.

I'll just let the song speak for itself . . . in fact, it may even be playing while you're visiting my blog (it's a song called "Blessings" by Laura Story, in case you're wondering):

"What if your blessings come through raindrops,

what if Your healing comes through tears,

and what if a thousand sleepless nights are what it takes to know You're near?

What if my greatest disappointments

or the aching of this life

is the revealing of a greater thirst this world can't satisfy?

And what if trials of this life

are Your mercies in disguise."

Yes, I do believe and will say it with a smile on my face: everyone needs an Isaiah in their life to show you God's greatness. Who is your Isaiah?

I Heart Faces Photo Challenge: Props

2011-07-19T20:47:00.008-04:00

I haven't entered a photo in a little bit, but couldn't help it when I saw this week's challenge . . . Isaiah is just so photogenic! =0) Anyway, the prop??? The hat. He LOVES this hat. He wears it almost everywhere, almost everyday. The poor hat started out as part of an Easter outfit . . . it has now become a staple for just about every outfit. =0)

So, what hat am I talking about???

=0) I just love his expression in this photo - he was goofing around, as usual. He is always so bubbly . . . and he is soooo difficult to photograph. In fact, I almost didn't get this picture. He was making all sorts of noises and bouncing around . . . then, he turned around with this look on his face - I'm so glad I had already pushed the button. =0)

Six years ago today . . . Part IV

2011-06-25T18:23:00.002-04:00

June 25th, 2005 was a day I will never forget. It was the day God blessed me with a wonderful gift - one for which I cannot thank Him enough.

The morning started out with a nurse coming in at 8:30 with pitocin. She hooked me up and said, "now, you're officially in labor." I was so excited and, I have to admit, quite nervous. I remember getting to watch a TV show I used to love when I was little - The Monkees. I remember trying to watch the show and make sense of the silliness, but was too excited about the thought that by the end of the day, I will be a mommy!

My mind kept flashing back to when I found out I was pregnant. I remember being at work and getting the phone call from the nurse - all I could say was, "are you serious?!? Oh, my gosh! Oh, my gosh!!!" I scared my friends who were there because I couldn't talk - and I wanted my husband to know before I said a word to anyone else.

I remembered telling my husband . . . I remember telling my mom and crying because I was so scared and I remembered how close I felt to her that day. I remembered not being a very efficient employee the rest of the day. =0) I also remembered telling just about everyone I came into contact with. I was so very excited - just like I was this day. God was blessing me with someone I had wanted so much, someone He promised I would meet one day.

After the pitocin was started, the day seemed to fly by. Every so often, the nurse would come in and increase the pitocin to try and bring me into "active labor." Finally, by about 2 pm (I lost all track of time at some point), active labor began. The nurse had just come in to increase the dosage, and within seconds of that increase I felt like I wanted to run a marathon just to get away from the pain! =0)

The nurse, knowing I was trying to keep things natural - no meds - was trying to have pity on me and kept sneaking in to take me on walks in the bathroom (I wasn't supposed to be off bed rest or off my left side yet). Some moms say that they forget the pain . . . I still remember. =0)

Anyway, I remember thinking that I just couldn't keep going through the pain and I REALLY wanted those drugs! The nurse kept reminding me that it was alright and to just keep breathing. Everything I learned in the birthing classes disappeared and I felt like I was going blindly into labor. Between no sleep the night before and the contractions I was having every two minutes, I was exhausted and began to fall asleep in between contractions.

Then, around 3:30, the doctor said that it was time to meet my baby boy. Three hours later, I met him. At 6:23 pm (about 10 hours after I received the first doses of pitocin), Isaiah Christopher was born at a healthy 10 lbs. 3 oz. and 23 1/2 inches long (my 2-month old newborn). =0)

His little cry was the most beautiful sound I had ever heard and even though I had planned on waiting to give him his very first kiss (you know, until after he had his first bath), I couldn't help but kiss his beautiful forehead. I was in love - even more than I had been while I was pregnant. There was the baby I had wanted so very much - the baby I had prayed to meet since the day I found out I may not have children. He was perfect. All the pain and the waiting were worth it.

God's timing was perfect. His promise and gift were perfect.

Six years later, I am still in amazement at all God has done through my little guy. He has brought us through some really rough times and I know that He will continue to do so. Even in the midst of Isaiah's health issues and the frustration (and joy) of Autism, God is doing amazing things through Isaiah. Isaiah is still the fulfillment of God's perfect promise and gift.

Isaiah, I am so proud and thankful to be your mommy. You are truly an amazing little guy - you're my hero. You have helped me learn things that I don't think I would have learned without you - you helped me learn to be strong, to be more reliant on God, and how to pray continually. While life may be difficult for you at times, you continue to smile and laugh. I just love that about you. I also love how witty you can be and your goofy sense of humor. You are my sunshine on days when I need a smile (I can always count on you for a good smile and laugh) and you give the best hugs of anyone I know. Your amazing memory still astounds me as does your bravery. =0)

Happy 6th birthday, baby boy, with many more to come! I love you, Schtinker!

Six years ago today . . . Part III

2011-06-24T18:23:00.006-04:00

Six years ago today, I had my scheduled appointment. This time, I didn't even consider being induced. I didn't even want to think that today was the day I would go into the hospital to meet my baby boy - I didn't want to be disappointed yet again. I went into the appointment with no anticipation, just plodding in there to hear my baby's heartbeat and to make another appointment.

The appointment was long. The doctor checked everything, left the room (he even darkened the room so I could nap a bit . . . laying there on my left side), then came back to check on me again. Instead of saying, "okay, see you in a few days," he said, lets get you checked out at the hospital." WHAT?!? Calming myself, he told me to go have a good lunch, then drive over to the hospital to be checked out. He didn't want to make any promises, but he also wanted to make sure I had eaten just in case I was there a while. So, I drove to Subway and ate what I could (I might have been hungry, but there was nowhere for food to go), then drove to the hospital. Yes, I was driving and I wasn't supposed to be . . . long story that doesn't need to be shared on the blog. =0)

When I got there, I was met by another doctor from the same practice. He looked at me and said, "you look uncomfortable!" Yeah, no kidding. My clothes barely fit (the full belly panel on my shorts was showing) and I couldn't breathe. Having compassion on me, he found a chair for me and asked, "do you have your bags with you? I can't bear to send you home - I'll see what I can do to have you admitted." Finally! A doctor with some compassion!!! =0) A trip to the car with a smiling nurse and a few hours later, I was given a room in labor and delivery. No, I wasn't in labor, but Isaiah had absolutely no room left in there and it was taking a toll on my health.

Six years ago, today, I was waiting in L&D. Waiting with hope and belief that my little baby boy was going to make an appearance the next morning. I was hooked up to all the monitors and given a few meds to prepare me for the long day ahead. Again, I was told to stay on my left side . . . they weren't kidding - they made sure I stayed on my left side and off my feet. I made a few phone calls and watched TV.

This time, I just knew I would meet my baby boy - a child I had prayed so much to have. I was excited, and slightly scared, but confident I could handle labor . . . ehem. =0) Prayer continued as I waited. There would be no dinner tonight - dinner is not given in this part of the hospital . . . but my hidden snacks worked just fine. =0)

I remember the room so well. It was made to feel like home. Beautiful wooden cabinets that hid all the evidence of being in a hospital with pretty pictures on the walls. The only evidence of the room being in a hospital were the floors and the bed. There was also the cart at the foot of my bed - the cart with all the things needed for the birth of my child, neatly covered . . . but they were there. There was also a bassinet waiting for my baby. This wasn't imaginary and it wasn't on TV - this was it. It also didn't feel like the last two times I was in the hospital - the doctor was determined to help Isaiah into the world. I was not leaving without my baby in my arms this time - even if a c-section was needed.

There wasn't much that happened that night - it was a lot of waiting. The birthday song would play for babies who were born that night over the speakers. I knew other mommies were meeting their little ones. This time, I wasn't frustrated - mine would be here soon.

I was as prepared as I could be. I had everything planned out for the next day (chuckle, chuckle). No more What to Expect When You're Expecting, it was time for the real baby books, you know, What to Expect the First Year. =0)

I slept little, if any that night. The bed made my poor left hip hurt along with my back (lovely delivery tables), but the excitement of what was to happen very soon kept me awake - even Lunesta wasn't helping. =0) All night, I listened to the sound of my baby's heartbeat and movement. I became thankful for this moment - a moment I knew God had prepared me for and prepared for me. It was perfect timing - His timing. There's no way of explaining why, it just was. I was happy and at peace . . . six years ago, today. =0)

Six years ago today . . . Part II

2011-06-20T18:23:00.003-04:00

Today was the due date . . . at least, six years ago. I thought for sure my baby would have been born by this time and I would be holding my tiny baby boy, Isaiah, in my arms. Well, God (and Isaiah) had other plans. As I mentioned in the last post, due dates are a cruel, cruel joke. ;0)

I had my bags already in the car - I was ready to go. Still, nothing. I began timing my Braxton Hicks contractions just hoping that maybe, just maybe they would be the real thing at some point (you know, maybe that would help bring on the real thing). =0) Still nothing. I'm convinced due dates are there to torture us mommies who are doomed to exceed them. You see it coming, and you get all excited, just to see it pass and become history . . . just not the history you had hoped for. Cruel joke those due dates are. ;0)

I was sick of laying on my left side, but moving around wasn't an option either. I couldn't breathe standing, sitting, laying down, standing on my head (just kidding about that last part). I just couldn't get comfortable. Of course, it was also painful to do much else - seriously, Isaiah was stretched out in there! =0)

I had given up on the baby shows - I was sick of them. Plus, I think I started seeing repeats. =0) So, I started watching Noggin instead. You know, getting familiar with the kiddie shows. I even watched Sprout and began to watch the Baby Einstein DVDs I had purchased months earlier - I got a really good deal on the whole set . . . at least the whole set they had at the time. =0) I abandoned strict confinement to the sofa, and began to crawl on the floor and wash the carpet by hand (I didn't want a baby to be on a carpet that didn't meet my preggo standards) and fixed his room . . . again. =0) Oh, crawling??? Yeah, I figured that would almost be the same as laying on my left side. =0)

I read the final chapters of my pregnancy books again, hoping to find some bit of information that I had missed. I was all prepared with my birthing plans and with all the "tricks" I had learned for labor and med-free pain management (yes, I was one of those who did not want drugs). I made sure my tennis balls were in a sturdy sock (to massage my back), my comb was in the right pocket in my bag (to hold during labor - it's supposed to help with pain), my (shhhhh) snacks were packed. I had everything ready. Oh, yeah, and I also began to read the first chapters in the baby books so that I could be prepared for my baby. =0)

Off to the doctor's appointment . . . I was hoping it would be the last one, the one where they would say, "go, wait at the hospital, your baby is coming." On the other hand, according to the doctor, Isaiah was still baking and nothing had changed in my preggo status. It would be the last time I would hear from a doctor that my belly was measuring a bit large (meaning a large baby) . . . I had heard this one other time. I just ignored it, ignorantly. =0) Another appointment was scheduled for the 24th with no talk of induction, but just the hope that labor would begin soon for me (no sign of it, though). Oh, and more bed rest on my left side. =0)

God was still teaching me lessons that I wasn't too thrilled with being taught. I wanted God to do what I wanted Him to do . . . I was trying the speak it into existence approach, and I was finding out that God does not work that way. Persistence (or in this case, stubbornness) is one thing, knowing and having the faith in God's plan and timing are another. I'm really not the boss (not that I thought I was, but I was hoping there was faith somewhere that changed things a bit), God is the boss and had decided when Isaiah was going to come into this world - God, and apparently my baby, were not agreeing with my plan. =0)

Six years ago today, I headed back home, sobbing (more rolling of the eyes, I know) to stay on the sofa and bake. =0)

More to come . . .

Six years ago today . . .

2011-06-18T18:23:00.002-04:00

I was still very pregnant and nearing the last of three due dates for a baby I didn't even know I could have (but wanted so very much). Six years ago.

I was praying, praying, praying that God would just help things along so I could have my little bundle of joy finally make his debut. I had been on bed-rest of some kind for about 2 months at this point (at first, it was limited, but the last bit of it was complete bed-rest). I was tired of laying on my left side (which began to hurt) and I was tired of being pregnant. Don't get me wrong, I enjoyed being pregnant and all the experiences that came with it, but I just wanted to see his little face and hold him in my arms and know that he was okay. It was at this point that TV programs like "A Baby Story" began to irritate the snot out of me. =0) But, what was there to watch while I roasted on the sofa??? . . . on my left side . . . ;0)

I remember crying and praying to God, "please, help me!" I couldn't breathe well anymore and I'm pretty sure when he would kick that he was kicking my heart. =0) My clothes no longer fit and I think I had one outfit left that would at least decently cover my growing baby bump. Too bad I had never considered a mu-mu! =0)

By this point I had been in the hospital at least twice - once because I thought my water broke and once because I was put there by my doctor for an overnight stay . . . and maybe induction. The latter hospital stay was the one that got me - all the nurses were sure that the doctors would induce labor. However, the doctor didn't induce labor and I was sent home with no baby in my arms, sobbing. =0) Silly, I know, but I wanted to see him so badly! I knew he would make his appearance, and I knew I would be overjoyed and fall in love with this "tiny" creature - I was already in love with him. I just wanted him here.

Oh, yeah, and there was even talk at one point of my baby coming early . . . ehem. =0) Yeah, at this point, he was not going to be a preemie.

Time went on, with me laying on my left side staring at the babies being born on TV. It was a trial in patience, I'm sure. I had plenty of time to think, seeing as I couldn't do anything . . . or at least, wasn't supposed to. I tried massaging the "no-no" spots on my ankles and legs, I tried herbal mixtures that were also on the no-no list for the preggos (oregano, black cohosh - safe stuff, but known to bring on contractions) . . . still, nothing. Okay, okay, so he wasn't supposed to come then . . . I get it. I still wanted to see him! =0) With every, "baby will come when baby comes," I wanted to scream. =0}

I had appointments every three days or so to check on me and baby. I lived for those appointments. I know it was more than likely the pregnancy hormones, but I felt like God was ignoring me (more importantly, I knew He wasn't) - my baby was just not finished baking yet. God knew when he would make his appearance, and He knew that it would be perfect timing. I would cry with every baby born on TV - I'm totally a sap! I would cry at commercials - any of them, really, but especially the ones with mommies and babies (insert eye rolls if you wish). =0) I longed for sleep (it's uncomfortable to sleep in one position all night . . . especially with a baby that wanted to stay stretched out all the time). Nesting instincts??? Yeah, forget about those. I think I had those from day one! =0) Besides, there is only so much you can do with a nursery without the baby in it.

I knew then, my relationship with God was changing. I was learning more about Him and learning more about patience. I was learning more on how to trust Him and a new way to listen for His voice - all lessons that would be invaluable later. The lessons didn't come easily . . . they were difficult to learn, but so worth it all.

With everything ready for baby to come, I waited and prayed. Six years ago today.

It's amazing how fast time flies, isn't it?

More to come . . .

YIKES!!!! (turn off the music player at the bottom to watch the videos) =0)

2011-06-05T01:30:00.004-04:00

It has been a while since I posted last . . . I didn't realize it has been so long! =0}

We have been busy - Isaiah's schedule is hectic. Since the last post, Isaiah has completed his second year in Awanas as a Spark, still hasn't gotten an IEP (though, after the second meeting, we are closer - he's so smart, he just doesn't understand language well), began real physical therapy, finished his first year in gymnastics and dance . . . let's see, have I forgotten anything??? Oh, yeah, he graduated from Kindergarten! =0) I can hardly believe my baby is now a first grader!!! Aaaaand, he had the first portion of his Make-a-Wish! =0)

Back to PT . . . his therapist told us that he has officially been diagnosed with - get ready for this, because I was totally shocked to hear this . . .

Cerebral Palsy!

Yup, that's right, Isaiah has been diagnosed with spastic diplegia - basically, it accounts for his legs being so tight and his upper body being so loose. He has hypertonia in his legs and hypotonia in his upper body, which basically means he has muscle/tendon/ligament tightness in his legs and weak/underdeveloped muscle tone in his upper body (which we knew, but now have a reason for it). Why didn't the doctor mention this a year ago when he had the MRI??? Your guess is as good as mine, but it was quite interesting to hear the final outcome from his PT specialist a year later! I'm not really angry, but I will ask the neurologist about it the next time we see him (he didn't even mention it at the last appointment). The PT specialist also told us that his measurements are borderline for braces. Nice. I am quite thankful, though, that he hasn't needed them thus far . . . hopefully, he won't ever need them.

Okay, now on to Gymnastics and Dance! He had his gymnastics recital the following week after his PT appointment (which, by the way, is done by me at home since insurance will only cover meeting with the therapist once a week for 23 sessions a year . . . ehem . . . ). Anyway . . . =0) Isaiah did sooooo well! I am so proud of him - he worked so hard and it showed. He might not have conquered a cartwheel, a push-up, or being able to hold himself up on the parallel bars for very long, but he did an amazing job! I know it was difficult for him, and at times painful, but he stuck with it. Here's a little video of Isaiah doing his gymnastics: =0)

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As far as the dance recital, (again) Isaiah did an amazing job! He is learning to walk on his heels, which is difficult and painful for him to do, and he is also strengthening his upper body. The kiddos were so cute! Since boys don't have as much in dance attire as the girls do, his outfit didn't exactly match the girl's . . . but he is just so stinkin' cute! =0) Here is the dance recital for you . . .

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Then, there was Part I of Isaiah's Make-A-Wish! This one happened a bit before the gymnastics and dance recitals . . . but it's one of the best. I had been putting off a Make-a-Wish trip for Isaiah because I felt like I was giving up and admitting the severity of Isaiah's health issues. I just didn't want to admit that they were that life-threatening, I guess. Well, I finally felt like I was cheating Isaiah out of something that was a gift for him and Isaiah got the first portion of his Wish - to see the space shuttle a bit closer than we have been able to get. He LOVED it! He was so excited about seeing the space shuttle from the causeway (just water between us and the shuttle) and also slightly disappointed . . . he thought he was going to go on a trip with the astronauts. =0) He had a blast, even though we had to leave our house at 5 in the morning to wait for a shuttle launch at 8-something in the morning. It was a wee bit cloudy, but we were still able to see this:

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Well, that's all I have for now . . . Isaiah turns 6 in about 20 days, now, so I will be posting (again) sometime soon. =0)

Missing??? Not exactly. =0)

2011-04-19T21:10:00.005-04:00

I just noticed that I haven't posted much of anything this year so far . . . sad, really sad. =0} So, this post is for those of you who still follow my blog and are absolutely curious as to what in the world is going on around here. =0)

First, the IEP frustration. To sum it all up (because it's a long story that still angers me a wee bit, to say the least), I was trying to get Isaiah on an IEP because, let's face it, he has autism and has difficulty understanding language. Well, the local school doesn't see it that way. The way they see it, he reads well and his comprehension doesn't count, so there's no need for an IEP . . . even if we are modifying his daily lessons and assessments because he cannot understand them! Ehem. So, another meeting is being planned to re-discuss the IEP and to at least go for a 504 (which wasn't even offered).

Second, Isaiah's psychiatrist and neurologist want more therapy. More ST, more LT, more social therapy, more OT, more PT . . . any way you look at it . . . more. =0) Isaiah is receiving some help, but it's not enough. He does need more ST and LT - he has difficulty understanding language and has some difficulty communicating (it can be difficult to understand what he's saying as well . . . he also has a habit of making up his own words). As far as PT, Isaiah's hamstrings are still really tight. His abductors are looser (hips), but his hamstrings haven't changed much at all. He has gained some upper body strength, but still needs to work on trunk control as well. Sooooo, more PT which is coming in the form of . . . PT (he is in dance and gymnastics to help, but it's not enough . . . though, it has helped things at least stay the same - without it, things would have been worse, so I'm told). Hey, he has actually learned how to run without a strange gait thanks to dance and gymnastics! =0) I'm so proud of my little man! This time, though, he actually has to go to the hospital for PT (no surgery, though - YAY!).

Third - Insurance. We're still having problems getting Isaiah's meds covered, but thanks to a new job for me, we have another insurance to help us out (Isaiah is on disability and is also now covered on my insurance policy). I also found out that disability (aka, Medicaid) will only cover 1 bottle of Xyzal every 365 days . . . with or without the other insurance. So, I am supposed to pay $70 a month for this med . . . in addition to the others that they are refusing to cover. To give you a little perspective, one bottle lasts us about 30 days . . . you can do the math, one bottle a year isn't going to help us at all. So, why Xyzal when there's Zyrtec? Xyzal works better. Isaiah had fewer weird reactions (red spots that turn to blisters and then look like bruises for weeks after).

Apart from all of this, however, Isaiah is doing okay. He hasn't had an episode of anaphylaxis since the last one in late February (literally, the last day in February). He did have quite a few rebound reactions that were less than pleasant (not that any are pleasant, but they weren't the easier ones to deal with). Isaiah has also had some interesting "minor" reactions as well, including those disco-light spots that appear and disappear . . . and reappear. This time, though, they stay there for a good bit, and if they are scratched, they turn into blisters that turn into dark red spots (they almost look like bruises) that don't go away for weeks. He has had the spots stay for a while, but never the blister issue with them. Weird, but not that surprising . . . Isaiah is, after all, the medical mystery as his local allergist likes to remind me of. =0}

The walk for Autism Speaks went really well - it was last Saturday. We were able to reach and exceed our goal, thanks to the generosity of many. Thank you, again, for those of you who supported us financially and even in spirit (as I know many wanted to donate, but were unable to do so). However you decided to support us, it was appreciated and loved - thank you! I walked the full 5K and enjoyed meeting so many people who were willing to walk in that hot, hot sun to raise awareness for Autism. It was inspiring and refreshing . . . even though a nice cool shower was needed at the end of the walk! =0) As for Isaiah . . . he didn't get to attend the walk because it was so hot. I really wished he could have been there - he would have had a blast! But, he got to swim in a nice cool pool while I walked in the hot, hot sun. =0)

On to my dad . . .

My dad has been having some health issues lately. When he works, he swells and is in so much pain he doesn't know what to do with himself. He is also having trouble with tremors - he shakes so badly at times. Sometimes, he is shaking so much he refuses to eat - what's the point if he can't get it to his mouth? He usually ends up dropping his fork and walking away from the table angry, frustrated, hungry, and confused. It's hard to see him go through this.

On top of that, his regular physician told him that his blood has thickened (from WM - the leukemia) and he is beginning to have nose bleeds - especially at night. He is always cold and is actually a darker color than he used to be (circulation issues).

Then, there are the memory issues. WM can cause Alzheimer-like effects, mentally, but he is going through testing for Alzheimer's just to make sure he doesn't have something else on top of everything else going on with him. He gets lost easily in familiar places, forgets things he has never forgotten before . . . has difficulty driving and remembering all the rules, forgets how to cook or that he has even turned the stove on, etc.

Please, please, please keep him in your prayers - for his physical and emotional health. He hates not being able to keep busy - he isn't physically able to take care of his lawn or do repairs on the house much less help anyone else out (for those of you who know my dad, this is torture to him). He won't tell you, but it's wearing on him - he hates to sit around and do nothing.

Lastly, my Uncle Ivan went to be with Jesus early this morning. Uncle Ivan is my dad's brother-in-law, but was like a father to my dad. If you were following my blog over a year ago, you may remember a post about my Aunt Sis - my dad's sister. Uncle Ivan is my Aunt Sis' husband. Like her, he had a wonderful heart. He was mischievous and was always in the mood to make someone smile or laugh. He was also devoted to my Aunt Sis, and spoke of her almost all the time after she passed away. Isaiah thought he was quite funny - they only met once, over a year ago, but Uncle Ivan had so much fun playfully teasing Isaiah and having Isaiah-friendly conversation. We're going to miss him - he was always the life of the party.

Blessings,

Kelly

Just a quck post . . .

2011-03-27T00:09:00.010-04:00

to tell you about an awesome Spring giveaway from Soft Clothing! Remember this picture????

And this one???

Those are clothes from Soft Clothing - and only two of the times Isaiah was wearing their clothes (we get a lot of wear out of them). =0) We have several pairs of pants from them, and they are just as soft as the day they arrived in the mail. We love them because Isaiah loves them . . . and he actually keeps them on and doesn't fuss about them being "yucky" or "icky".

Aaaaand . . . he'll be wearing the soft denim pants (and maybe even a soft shirt) for his Spring dance recital. =0) (Keep a look-out for those photos) =0)

If you know a child who has sensory issues, or a child who just looooves soft clothes (who doesn't, right?), then take a look at Soft Clothing's site - they have quite a bit to look at including shirts, shorts, dresses, socks, and pants. They also have a list of resources on their site for sensory kiddos. While you're there, enter the giveaway, too! =0)

I am also writing a post that will be, uh, posted soon. =0) I just haven't quite gotten there yet . . . but it is coming. =0) For now, I have to go . . . we have a trip to St. Pete tomorrow for an upcoming appointment and a quick Spring Break vacation. =0)

I will post . . . I promise. =0)

2011-03-10T21:42:00.003-05:00

I am just trying to find the right words to write a post about another anaphylaxis episode, an IEP meeting that wasn't, rebound reactions, the good things going on, and the Autism Speaks! walk in April . . . until I can put the frustration/anger & happy words into a post . . . "think happy thoughts, happy thoughts . . . " =0}

A few pics to pass the time . . .

We're Baaa-aaack! =0)

2011-02-23T21:31:00.005-05:00

We're home (and so glad to be back, too)! I really like it in St. Pete, but the roads just are not marked well! =0)

The second appointment was, well, the usual. =0) Nothing really new to report apart from a new medication to replace the current one (which is causing a bit of an undesirable side effect that I won't go into). Nothing bad, just undesirable (not saying for Isaiah's sake). =0) He has already started the new med, and so far so good. He's not heavily medicated (definitely not a zombie) . . . in fact, he seems quite peppy . . . I hope he sleeps tonight! =0) If not, we can talk about that when we go back next month (new med = appointment in 4 weeks). It's a great time to go, though - it's Spring Break for us, so we can actually have a "vacation" of sorts.

It also looks like Dr. R is going to help us get some other therapies in place as well - OT, more PT, SLT . . . occupational therapy, physical therapy (his hamstrings are soooooo tight!), and speech language therapy. =0) This is a good thing - a very good thing. The sooner we get these things in place, the better the outcome for Isaiah.

For us, it has almost felt like we were on our own as far as providing all of these services - finding the providers, finding the finances, etc. I'm glad we have their support, even if they are in another county (3 hours away). I know that the insurance will cover these therapies (in theory), it's now just a matter of who will provide them and how. We are also in contact with CARD who will also be helping with all of this . . . and it's completely paid for with no expense to us.

We also signed up for a walk in Tampa! =0) We're going to be part of Team Rothman Center (long and awkward name, I know) in the Walk Now for Autism Speaks!!! The walk is Saturday, April 16th and will be in Tampa . . . yes, that means we'll more than likely be over there again. =0) It's okay, though . . . it's a Saturday.

Anyway, please support us in the walk (even if Isaiah is unable to attend because of the heat). If it's cool enough, Isaiah will be there with his stroller, frozen ice packs, and cooling vest. =0) If you look on the right side of our blog, you'll see two boxes - either box will take you to our personal Autism Speaks! page where you can make a donation to support us. I know I only set a goal of $150, but I'm sure we can reach that and go beyond! Please donate to help us solve the puzzle.

RDD (Rare Disease Day) is just a few days away now, too. If you don't want to donate to our walk (and you're in a donating mood), =0) you can donate to Masto Kids to help us find a cure for mastocytosis. Either way, your helping to fund research and awareness (more awareness means more funding for research). Both autism and mastocytosis have affected our family and finding the cure/effective treatments/answers are just as important to us.

Blessings!

First of Two Appointments

2011-02-22T21:56:00.009-05:00

We're back in St. Pete at All Children's Hospital. Isaiah had his first appointment today at the AIR Clinic (we finally scheduled his appointments over here next to each other so we could accomplish the appointments in one visit). Tomorrow, Isaiah has his appointment with the neuropsychology clinic.

Really, there is nothing new to report. We may have to have his IgE/RAST testing redone, considering they were not back yet (they should have been since they were done in December). So, more than likely, we will have to have them repeated. The RAST testing just gives us an idea of how sensitive Isaiah's body is to allergens - mostly food allergens, but there are a few environmental allergens listed as well. Last year's test didn't reveal much of a change - Isaiah's total IgE was well over 2,000 then . . . it should be much less than that . . . less than 60 would be nice. The higher the number, the more sensitive he is. He also had more allergens that were above the scale - the highest they can measure is 100 . . . Isaiah's counts for milk, wheat, soy, peanuts, and eggs were well over 100. As far as environmental allergens, cats and dogs were around 90/98.

Another count we'll be watching for is his eosinophil count. Two years ago, it was at a 9. Last year, it was 11. Again, the higher the number, the more reactive Isaiah's body will be. He already has eosinophilia and he is not too far from having hypereosinophilia. Basically, that just means that without God and the meds, Isaiah would have organ damage. With hypereosinophilia, it won't matter if Isaiah is on medications or not, his body will attack his organs. We're praying this count stays down because that is just a scary road to travel down.

As usual, we got the talk of medications and their long-term side effects. I was expecting that, but it's always just as frustrating to hear. Yes, the meds can have long-term side effects and some of the meds haven't really evaluated long enough to know the full extent of their side effects, but . . . it's better than being off the meds at this point.

What I am sure of is that God is in control. Whatever the outcome, whatever the future brings for Isaiah and our family, God is in control and will use the situation to bring glory to His name - and to that I say, "amen!" If it were up to me, I would want Isaiah miraculously healed right now - and that would be awesome! That can still happen. Right now, that isn't the case (at this point in time). God is doing what He sees fit, and that is walking us through this. Scary? Ummm, YES! Comfortable? Absolutely not. Do I find peace? Yes. His knowing where we're headed is better than my knowing where we're going. =0) My comfort is found in knowing He can handle this . . . He is the creator of the universe, after all.

Tomorrow is another appointment . . . but we usually don't get too much new info. at these appointments. =0) Sometimes, I wonder, "what's the point in driving 3 hours to hear about nothing?" Well, I guess there is a point and I'm sure if I had any new concerns or questions about my son and autism I'd be more than grateful for the appointment. =0) I'm grateful for the appointment, by the way . . . just being silly. =0)

I will post, again, tomorrow . . . especially if we get to do anything exciting . . . like the Pier. =0)

By the way, Rare Disease Day is coming up - Monday, February 28th!!!! Wear your spots in support and to help raise awareness for Mastocytosis!!! =0)

Long time, no post! =0)

2011-01-30T22:34:00.001-05:00

MERRY CHRISTMAS & HAPPY NEW YEAR!!!!! (a wee bit late) =0)

Okay, so I know it has been a while since I posted last. A lot has been going on - our schedule is as hectic as ever! =0) Isaiah has PT twice a week (in the form of dance and gymnastics . . . but its intent is a fun form of PT . . . PT=physical therapy). In the middle of the week, we have Awanas, which is sort-of like a social group as well (at least, that's an added benefit). =0) He also has tutoring 3 times a week . . . then, you add my schedule in there and our weekdays can be crazy to say the least. There's never a dull moment around here. =0)

Outside of that, you have doctors visits and interesting conversations (read "arguments") with the insurance company who decided that we can pay - in full - for Isaiah's prescriptions because they're antihistamines . . . yeah, even if I had a million dollars, that would be expensive (three of the prescriptions rang up to $1,500). Thankfully, God had another option in mind - a mostly unmarked (meaning, no name of a company anywhere on the card) prescription card that miraculously covers all of the meds. God is truly awesome! We have Isaiah's most costly prescription back and just in time before a major reaction (he is still coughing from being off the med for over a week). Oh, and he's not having as many meltdowns now that he is back on it, too. =0) If that doesn't scream necessity, I don't know what does.

Apart from that, there's not much to report . . . oh, we also lost Isaiah's local allergist because of insurance issues. =0( She was an awesome doctor, too . . . as soon as we get this stuff straightened out, we're back in her office! What's the point in having more than one allergist??? One is local (all of 10 to 15 minutes away because of traffic lights and in the same town we live in), the other is 3 hours away (plus tolls and hotel room rates - RMD House only takes hospital patients unless they are clinic patients receiving treatments) . . . and Isaiah's case is just that perplexing that he needs more than one doc on the case. Plus, they seem to help each other treat Isaiah and the local allergist can see Isaiah in an emergency (which was nice). Now, we have to drive 3 hours to the AIR Clinic (Allergy/Immunology/Rheumatology Clinic) in St. Pete for emergency appointments because the pediatrician has no idea what to do with Isaiah.

As far as lab results, the 5-HIAA lab test came back normal. I didn't quite explain this test, but it is basically looking for a tumor. His allergists in St. Pete were wondering if maybe the extra histamine running around in his body (and increasing IgE and eosinophils) were caused by a tumor - a tumor that had already metastasized (carcinoid syndrome). This type of cancer (though cancer) is highly treatable (curable) and would have meant that Isaiah could come out of his bubble once the tumor was removed/blasted. So, it could have been a good thing - at least in the sens that Isaiah's counts would have come down and he might be able to try new foods. The bad side being it's cancer, which would mean surgery, chemo, and radiation. Thankfully, that's not the case. However, we still have no answers as to why Isaiah's counts are getting higher.

Isaiah was also tested again for hereditary angioedema (HAE). It would explain the random swelling and anaphylaxis in the middle of the night, but it still wouldn't have explained everything. In fact, it would be just as frustrating seeing as there is still no cure and treatments are the same as we are already doing . . . with a few changes here and there. It still wouldn't explain the IgE and eosinophilia. That test also came back (as before) normal. His liver enzymes are a little off, but not enough to say that he has HAE.

Then, there was the CT scan (after all, Isaiah had a fever for 4 months!!!!). The CT scan came back with a sinus infection (one that just didn't show up on the outside with a runny nose or anything) and significant sinus disease. Basically, Isaiah's fever was caused by the sinusitis (and Masto . . . cuz it does that) and is on Levaquin for 14 days to treat it. The sinus disease just means that his sinuses are not happy. They are swollen, irritated, and the cilia (little hairs in your nose/sinuses) are not working properly. His sinuses are damaged (including cilia), but they aren't to the extent that he would require irrigation (a tube stuck into his sinuses to wash them). He is on a new nasal spray to help the undamaged cilia to heal and work properly.

Apart from all of us getting some kind of virus (yes, I managed to bring home and infect our entire household), we're all doing well. =0)

Of course, there is my dad. He is in pain and cold. He has been shaking quite a bit (so much so that he can't write), so the doctor has taken him off of one of his pain medications to see if maybe the med is causing the problem. Of course, that's not the end of the story . . . we're much to complicated for that. =0} If my dad hasn't already told you himself, he is being tested for Alzheimer's. This has been a consideration in the past, but because he is having progression of symptoms (and worsening of certain symptoms), his doctor is revisiting this idea. Of course, it could just be progression of Waldenstrom's, but the doctor just wants to make sure. I will keep you updated.

On another note . . . it's almost time for Rare Disease Day, again! February 28th is Rare Disease Day. Last year, we were helping to raise awareness for mastocytosis by wearing our purple and polka dots. For Isaiah, we made a shirt using his ideas for things with spots (by the way, most children with mastocytosis have some form of spots . . . Isaiah is one of the rare ones who has no spots). Nai-Nai and Ye-Ye joined in last year, wearing ribbons to support MastoKids (a wonderful support group who have been an invaluable resource of information and encouragement to us). Just as last year, we'll be sporting our spots. =0)

Mastocytosis isn't the only rare disease in our household, though . . . apart from Autism (which is somehow listed on the RDD website) and anaphylaxis, Waldenstrom's Macroglobulinemia is also a rare disease . . . we just don't have a color to wear to raise awareness for that one. =0}

Sorry, I couldn't resist . . . I just love this picture of her! =0)

Merry Christmas!!! =0)

2010-12-24T16:01:00.006-05:00

Please watch the videos at the bottom of the page (don't forget to turn off the music player at the bottom). =0) I haven't had much time to post recently, but I am working on a post about Isaiah's health - I have been waiting on labs to come back to (hopefully) give a little bit of info. as to all that has been going on here. Isaiah is doing okay - he hasn't had an ER visit, just lots of doctors visits since his last episode of anaphylaxis over 8 weeks ago. Anyway, the videos - - - MERRY CHRISTMAS!!!! =0)

(By the way, I have added one just because . . . he's just too cute! =0) Mommy's little Rock Star! The guitar was a Christmas present that he chose to open tonight - I always let him open 1 present on Christmas Eve, he chose this one)

(don't forget to mute/pause the music player at the bottom of the page) =0)

2010-11-27T22:57:00.005-05:00

I love this time of year! It's warm, it's cozy; most people are super-friendly - it can bring the best out in some people . . . (sometimes the worst). =0} It's a time of year where there are tons of beautiful decorations and Christmas music makes its appearance. Stores are busy with holiday shoppers and sales galore. However, it’s not always peaches and cream for those on the Spectrum - the Autism Spectrum. For Isaiah, this time of year is amongst his favorites, too, but the crowds, loud noises, and tons of change seem to overload his brain and in the midst of all the business and happiness (and decorating), we find Isaiah having an untimely, all-out meltdown.

Family over for Thanksgiving dinner? Meltdown.

Thanksgiving decorations going up? Meltdown.

Thanksgiving decorations coming down and Christmas ones going up? Meltdown.

Let's not even talk about the Christmas decorations coming down . . .

He hates change. We try to make the transitions happy for him - he even helps with the decorations or preparations (sometimes). But he can't seem to escape the whole sensory overload sometimes. Usually, one or two small changes are fine. It's more or less when those changes are in preparation for visitors that it can be a problem (when you have to make room at the table or move some of the furniture so there will be room for the guests and the Christmas tree).

Then, there is the chaos of extra people in the house, who bring extra noise because of the many stories that are being shared - it's then we find a meltdown. He enjoys the people being here, it's just that just doesn't like the noise. This is why theme parks are generally a bust for us - Isaiah can't take the noise, the busy-ness, the crowds; too many things to see and hear. Shopping, as you may have guessed, is just as tough on him . . . add to the crowds a crying baby/toddler/child and Isaiah becomes a mess.

This year, the family actually saw the meltdown (which used to be avoided by me taking Isaiah aside for time to calm down . . . or a video where Isaiah could escape for an hour or so). This year, that didn't happen - there was too much to be done and mommy overlooked the aside time. Add into the whole overload the relentless fever that he has had for 5 weeks, the fact he's not feeling very well, the fact that he's not sleeping well again, and you have a recipe for the mother of all meltdowns (at some point, I will write a post on his health situation). Did I mention the withdrawal from steroids and change of medications somewhere in there??? Poor guy had his plate absolutely full and just lost it. We had the gaping mouths, bulging eyes, and non-understanding comments going - people who don’t understand what it means to have a child with Autism and Sensory Processing Disorder. At first, I wanted to be angry - I wanted to dish out the hurtful comments in response to what I was hearing . . . but I realized they just don't understand. What would my hurtful comments do but cause squabbling and more hurt feelings?

You don't understand until you have lived the experience. Even working with children with Autism, I never got it. Sure, I had a wee bit more of an understanding (and learned not to point fingers and say a "misbehaving" child was just poorly disciplined), but I never truthfully got it - until now . . . now that I have my own child with Autism.

Here is a poem a good friend (and advisor) shared on Facebook (thank you, Kathy) that seems to explain it all from our point of view (add "he" for Isaiah where the poem has "she"): =0)

An Autism Christmas Poem

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
Asleep early for Christmas?
...an unlikely path

The children were finally
All nestled in bed
When visions of Christmas
Ran through my OWN head

Did I get the right gift?
The right color and style?
Would there be a blank stare
Or even, maybe, a smile?

Friends & family come
But they don't understand
The pleasure she gets
Just from bending her hands. (or jumping) =0)

"Just make her stop it," some say
"Just tell her "no",
“You must learn to be tough.."
On and on they go...

We smile and nod
Because we know deep inside
The debate is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles, triumphs
achievements and regressions.

But what some don't know
And what some don't see
Is the joy that we feel
Over simplicity.

She said "hello"!
She ate something green!
She looked me in my eyes
She did not cause a scene!

She peed on the potty!
Who cares if she's ten;
She stopped saying the same thing
Again and again!"

Some others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With envy, with wonder,
Or even distaste,

What we want them to know
What's important to see
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try so hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in our shoes
And I'll assure you…

That even 10 minutes
Into the walk
You'll look at us all
With respect, even shock.

You will realize
What it is we go through
And the next time you see us
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years I learned to
When the tables were turned.

~Christine Muczyk

Happy Thanksgiving!

2010-11-25T18:44:00.002-05:00

Soft Clothing Giveaway!!

2010-11-19T20:11:00.005-05:00

I love Christmas! It's my most favorite holiday. I love just about everything about it - the sights, the smells, the sentiment, the warm cozy feeling, the smooth voice of Bing Crosby playing in the background, the thought that it's the season we celebrate God's gift of Jesus and life to the world . . . it's just a wonderful season!

Considering the season of giving is now upon us, Soft Clothing and Hartley's Life with 3 Boys Blog are having a Holiday Giveaway!! I have mentioned Soft Clothing on my blog before, but just in case you are wondering, Soft Clothing is a company dedicated to making soft clothing - comfortable clothing designed with children with SPD in mind (Sensory Processing Disorder).

As for Hartley - I guess you could say that she found me. =0) I really enjoy reading her blog about life with a child with SPD and Autism.

I can tell you, Soft Clothing really lives up to its name. No matter how many times we wash Isaiah's pants and shirts, they are still as soft as the day they arrived - and we don't even use fabric softener!

There will be 2 prizes given away (one for a boy and one for a girl) and will include prizes that focus on fine motor skills, sensory integration, creativity, and more. Here is what will be included (taken from Soft Clothing's site):

Quilted Train Stocking from Pottery Barn Kids (boys prize)

Quilted Angel Stocking from Pottery Barn Kids (girls prize)

This is Gabriel Making Sense of School, by Hartley Steiner

SPD Awareness Calendar (for sale at http://www.sensoryplanet.com/)

Glitter bouncy ball from Pottery Barn Kids

Alex Finger Crayons

Tangle Textured Jr

AKU Sensory Ring

Melissa and Doug Jumbo Paint Brushes (set of 4)

Melissa and Doug Deluxe Fuzzy Make your Own Monster Puppet

Wonderland Eco Friendly Rainbow Sound Blocks

Mood Therapy Putty

Soft Seamless Sock 2-pack

One complete Soft dressy look for girls OR

One complete Soft dressy look for boys

Isaiah has some sensory issues with texture, especially when it comes to clothing. Since Isaiah's skin is so sensitive, I cannot use fabric softener in his clothing, which can make the clothes scratchy to him, which (of course) drives him nuts. Have you ever tried to wear blue jeans without fabric softener??? Enough said? =0) That's why I love the denim pants from Soft Clothes - there is no need for fabric softener because they are super soft. Isaiah has yet to complain about them being icky.

So, how do you enter? Click on any of the embedded links above or click HERE and enter away! =0)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

As far as Isaiah's health . . . I have more to post on our recent All Children's Hospital appointment (it was an unplanned, emergency visit) . . . but it will have to wait until my brain has a little bit more time to process all the info.

So, for now, here are a couple of pictures I want to share with you:

Morning snuggles with a napping Ye-Ye =0)

. . . and just because she rarely shows up on the blog

(thank you, Nai-Nai, for all your hard work and support!!!)

Isaiah is my Hero

2010-10-24T16:49:00.007-04:00

God was really watching over Isaiah last night. I had finished cleaning up after our little Fall and "first tooth lost" party last night and was sitting outside Isaiah's room getting ready to put his money under the pillow, when I heard a crackling, snorting kind of sound coming from my child. Isaiah does snore quite on a regular basis (and quite loudly, I might add), but this really sounded different. At first, I thought, "he's just snoring weirdly tonight - no biggie." But, I just had that feeling and then heard Isaiah moving around a bit. When I turned on the light, I saw Isaiah covered with a rash, red, swollen, and the areas that weren't red were blue (the tip of his nose, his very swollen lips, a portion of his forehead, his swollen fingers and hands, and his swollen feet). I grabbed him and administered the Epi. He looked awful! The noise I was hearing was him trying to breathe! He was so swollen. Even when I gave the Epi, Isaiah didn't cry and didn't even flinch (he was still somehow conscious).

(The pictures were taken after the Epi while waiting for the ambulance - his allergists want to see pictures of his reactions.)

By the time the ambulance arrived, Isaiah was still panting, but breathing . . . and his feet and ankles were so blue that they looked dirty. This time, the paid firemen didn't wait for the volunteers to arrive (we have two fire departments close to us - the paid firemen are closer, but usually don't transport because of zoning). Things calmed down in the ambulance and his BP and sats were all relatively normal by the time we got to the hospital (he still had tachycardia and his BP was just slightly below normal).

Thankfully, today, he is fine - a little swollen, but fine (he's a tad high on prednisone). =0} I can't imagine what would have happened if I hadn't been sitting right outside the door - I wouldn't have heard him. God was watching over my little man - I am so thankful for that. I am so glad that I didn't stay out in the living room and write his note (I wrote a note to go along with his "tooth fairy" money), I am so glad that my purse was right outside the room . . . I'm so thankful that I was sitting on the floor in front of the door and I'm glad I wasn't asleep - I don't think I would have heard him. God was really watching out for him - He is so good!

Isaiah will be on prednisone for the next few days (a pretty hefty dose, too). =0} Hopefully it won't mess with him too much - he gets a lot of energy and can be quite moody on it. =0) If my post is redundant or really doesn't make sense . . . sorry, I need to go to bed. =0) Goodnight!

We have an announcement!!!

2010-10-23T21:26:00.008-04:00

ISAIAH LOST HIS FIRST TOOTH! =0)

(can't tell I'm excited, right?)

=0)

Here is the new toothy (minus one) grin:

And, apparently, I'm super mom because Isaiah says that when he goes to sleep I'm going to whistle and turn into the tooth fairy. I had no idea! =0) He has quite an imagination.

This tooth was Isaiah's very first baby tooth, so it's fitting for this tooth to be the first one he lost. While this photo isn't of the moment I discovered his first tooth, this photo at least shows his first tooth. =0) The funny thing is that I even remember the outfit he was wearing when I discovered his first tooth - little blue fleece with "68" embroidered in silver on it. =0) Ahhh, seems like yesterday.

I'm so proud of my little man! On top of losing his first tooth, Isaiah is doing so well in Awanas this year. Last week, he memorized the names of all the books in the New Testament - 27 books! Isaiah has quite a memory and he is absolutely determined to memorize whole sections of his book (approximately 4 verses per section). He's an amazing little man. And, on top of that, Isaiah is reading words that he shouldn't even be able to read (we have to hide the verses book just to make sure he's not cheating). =0)

Well, I think I should probably end the post here . . . you know, because I have to turn into the tooth fairy and all! ;0)

Upcoming appointments: this Wednesday, IEP meeting (with a Family Liaison who already has the school on their toes . . . and we haven't even met with them yet!) =0) Pray that all goes smoothly and that we can get this IEP in place before Isaiah has any problems with school work.

Health update: Isaiah is still having problems with petichiae and bruising . . . and the usual allergy & masto symptoms (including the seemingly endless battle with eczema) - still no anaphylaxis!!! We're trying the pill form of one of his meds (Xyzal), so please pray that it works and that he will continue to take it. He hates pills and would much rather have the icky-tasting liquids (it's a sensory thing, I guess). Pray also that the pill works just as well as the liquid . . . any form of messing with meds makes me nervous.

My baby put on his shoes!!!

2010-10-08T22:56:00.001-04:00

ALL BY HIMSELF! =0) He may not have tied them, but he did put them on for the very first time! I'm so excited! So excited that I gave him a huge hug at dance (where he put his shoes on by himself for the first time) and told him just how very proud of him I am.

And if that just isn't enough exciting news for you, well . . . Isaiah has his very first loose tooth!!!! =0) I'm so excited (and queasy)! He wasn't too thrilled about it at first (there were tears shed), but then I explained that once he loses this tooth, he will get a grown-up tooth in its place . . . and there were more tears shed. =0} After telling him it was okay to lose his tooth, and making a big happy to-do about it, he cheered up and squealed, "and Ar-fur said a toof fairy brings money!" =0) (by the way, Arthur is a PBS Kid's TV show)

His baby tooth (the very first one that showed up) is really crooked . . . and if you wiggle it, you feel lovely scraping and grinding (that's where the queasiness comes in . . . at least for me). =0}

It seems almost like yesterday I was sending pictures of the very first tooth over the Internet to just about anyone in my e-mail address book. Now, I am writing about that same tooth being loose and waiting for it to fall out so I can send (yet again) pictures to anyone who will read about Isaiah's very first missing tooth.

*sigh* =0)

Isaiah has also learned two new songs that he loves singing at the top of his lungs . . . in addition to Toby Mac's "Just give me that funky Jesus music" . . . (you might want to turn up your speakers and pause the music player at the bottom of my page) =0)

("I'm walking on shun-shine! Whoa-oh-oh!") I love it!

("Shake and move dance, shake and move dance, yeah-yeah!" . . . Shake Your Groove Thing . . . he got it from my birthday card.) =0)

He's such a ham! =0)

I am just so proud to be Isaiah's mommy! =0)

A Smirk & Catching Up . . .

2010-09-21T15:38:00.013-04:00

First, the smirk. =0)

The iheartfaces photo contest this week is all about smirks. Isaiah is notorious for his facial expressions . . . including smirks:

So, I have entered the above photo in their contest (boy, he's gonna love me for that photo when he grows up). =0)

I was trying to get his 5-year pictures (for our annual tradition of birthday photos) and Isaiah had just about had it with me. So, when I said, "smile," he gave me this face. Goober. =0)

And, as far as the catching up . . .

Isaiah had his appointment in St. Pete 2 weeks ago. Usually our appointments are about the long list of meds, more talks about avoiding known triggers (allergic reaction triggers), reactions and ER visits since the last appointment, etc. This one included a lovely Obama's-new-health-care-policies talk. A talk about the long-term side-effects of the medications and the "options" that are available to us. We have options? Really??? I guess my idea of options is a little less complicated. I don't know about you, but I thought that taking Isaiah off meds would be worse than those side effects - my gut is telling me that uncontrollable anaphylaxis is much worse than the damage the meds can cause (including irritability, glaucoma/cataracts, weight gain, etc.). He's five for Pete's sake! The poor doctor kept repeating, "I'm sorry, it's the new policy," because even she knows how insane this sounds. A sadly funny joke she made was that Isaiah is a walking antihistamine pharmacy. =0} He is on everything there is (approved by the FDA) to treat the symptoms of allergies.

The meds talk also included a discussion on Singulair, just one of Isaiah's 15 meds. Apparently, Singulair can cause behavioral problems (including suicidal behavior/thoughts). While I would hate to see my 5-year old even struggle with that, I also hate to see my 5-year old struggle to breathe during an allergic reaction. Singulair has actually helped Isaiah with the breathing issues during a reaction, making the reactions "easier" to manage (breathing issues always preceded anaphylaxis before Singulair was added to his daily regimen). While I would love to take him off Singulair (hey, it would be one less med to give him every day), he doesn't seem to have any extra behavioral issues - everything we are experiencing now was there before Singulair was given to him. So, it stays until God tells me otherwise. =0)

Apart from that, the petechiae was another cause for discussion - it's still there and pops up quite frequently. In fact, he hasn't gone a day without new spots popping up. Since we do not know what's causing it, we're supposed to keep an eye on things. If it gets worse, or he starts having nose bleeds/other bleeding, then we obviously have to make an appointment for blood work.

So, that was that appointment. =0}

Then, last week, there was the neurology appointment. No worries (for those of you who did not see my post on Facebook), Isaiah's test results are NORMAL! =0) No cerebral palsy, no encephalopathy (brain damage), and no chromosomal/mitochondrial defects! This is all good news - God is wonderful! To be honest, though, I was hoping to find something that was curable so that Isaiah wouldn't have to go through any more stuff - something we could just make go away. But, I will take normal. =0) The neurologist gave us a script for PT (physical therapy) and sent us on our way.

The next day, we headed to Nemours for the geneticist appointment. This was a thorough appointment where the doctor went over health records, examined Isaiah head-to-toe, and reviewed known family history. Apart from a patch of light skin on Isaiah's tummy (and close-set eyes), she didn't make a note of anything in the physical exam (oh, and the tightened hamstrings and tendons and loose upper-body). She basically confirmed the ASD (Autism spectrum disorder) with a recommendation for the various therapies that go along with the diagnosis (which I explain a little more below). =0)

On Thursday (yeah, full week, I know), Isaiah had his Kindergarten assessment. He did extremely well - he knows his letters and their sounds. The only portion Isaiah had trouble with was the language portion (not surprising). Isaiah doesn't really seem to understand a lot of what is said to him, and he has a lot of trouble letting you know what he is thinking/feeling (conveying opinions). They noticed that he has trouble with directions or questions unless they are rephrased a few times - and he's beginning to have an issue (minimal) with eye contact (mostly when he's frustrated because he is confused or when he's being tested on something that he's bored of talking about - something he already knows and no longer wants to discuss). =0} He most certainly did not get that from me! ;0) (thanks, Mom, I do remember the stories of me and Kindergarten) Ehem.

So, we are setting up an IEP meeting to talk about ST (speech therapy), RDI (relational development intervention - a behavioral therapy), PT (physical therapy - which the doctors are already working on), and OT (occupational therapy). In the future, you can use this post as a reference for all the acronyms, because it has taken me soooooo long to type it all out. ;0)

I think that's everything . . . =0) I may even get to have my cast taken off tomorrow!!! =0) I'll let you know.

With all that has happened over the past few months, even years, I am frequently reminded of how grateful I am that God never leaves us nor forgets about us. He has always proven Himself faithful and is always my comforter. I am amazed when people ask me how I handle all of this. The truth is, that I don't; I couldn't handle it all by myself. Apart from God, I think I would go insane - there has been a lot more that we have gone through that I have not posted on this blog. I can honestly say that without God carrying me though all this "stuff", I don't know that I could have handled it. If you haven't given Him a glance, you should - He's a life-saver and changer. My favorite thing to say about Him, apart from how much I love Him, is that He's cool like that. =0)

Blessings,
Kelly

Well, I called about the labs . . .

2010-09-01T22:52:00.004-04:00

. . . and . . .

. . . still no results. =0( So, I guess they'll take 8 weeks to come back. I'll probably call everyday until they come back, too. ;0)

Since I can't resist . . .

. . . a couple of older pics I haven't shared here . . .

. . . and a somewhat recent picture of him (taken before my wrist was broken). =0)

Tumbling and Tap

2010-08-30T20:37:00.009-04:00

So, where have we been lately?

For starters, Isaiah has been doing a bit of tumbling . . . (boy's gymnastics)

. . . And a bit of tap (ballet/tap/jazz/hip-hop) . . .

How about Mommy??? Not much of either . . . =0}

My very first cast and broken bones at 29! How did this happen (to my right hand, which also happens to be my dominant hand)? One pointy elbow met my very vulnerable wrist, two fractured bones and a couple of doctor's visits later I'm in a nice purple (water-proof) cast. =0} Just to explain a little, don't tickle your twelve-year old nephew who has taken tae kwon do, or you may end up in a cast for 6 to 12 weeks. Ahem.

Taking photos isn't exactly easy, either. Guess I'm going to have to try turning my camera upside down! =0)

Anyway, things are going well with Isaiah's schooling. He is still adjusting to his new schedule and routine, but he's handling it all much better.

Writing is going about the same, but at least he is interested in touching the pencil. =0)

As far as health issues, we haven't had an ER visit in a bit (since July or about 6 weeks ago)! Other than that, Isaiah has had the "usual" issues: flushing, mood swings, itching, rashes (especially on his face and around his eyes for some reason), appetite changes, GI stuff, swelling, petichiae (though we haven't had labs drawn for it because we haven't had all that much of a break from it and I don't want to put him through too many pokes), sleep issues, pain . . . the stuff that I hate to even admit that has become "normal" for him.

Labs? Not back yet. I'm going to call tomorrow, seeing as the labs were drawn almost 7 weeks ago (the labs were supposed to take 4 to 6 weeks to come back). Isaiah has a few appointments coming up in September & October, so I will keep you posted on all of that.

My dad? He's in West Virginia. =0) He said that he's in a bit of pain (and grumpy because of it), but he seems okay. I was actually worried that he would get lost at the airport! He has had so many memory issues lately (part of this Waldenstrom's thing) and had even asked odd airport-related questions before he left (flying should not be all that new to him considering the number of times per year he has flown somewhere). He has also been getting lost around town, here, too. I think he has an appointment when he gets back, so I will let you know how that one goes, too . . . if he lets me tell you. =0)

Thoughts on the Week

2010-08-13T20:09:00.008-04:00

I can't believe this week is already over! Isaiah has been in kindergarten for a whole week! He has amazed me with what he already knows (the kid reads more than we know - even reading the words large and small - and knows all the names of the planets in our solar system), and I'm sure he will continue to amaze me.

We had fun with language arts, talking about Cinderella and The Frog Prince; we had fun learning about light and how our eyes work in science; we have learned how to make a clown puppet using various shapes in math; and we have learned about the seven continents and what makes them special in history.

Isaiah continues to work on writing his name (and writing in general), but he has already made such great progress! I have been so blessed to be at home with him during his first week of school. It has been fun teaching him because I am learning so much more about Isaiah - things that often get overlooked. I'm not saying I don't spend time with my child, nor that I ignore what he is able to do, but it has been so nice to continue to watch him grow.

While he isn't quite used to the whole school schedule, yet, it has been a lot of fun. Today, for example, we imagined we were in the circus as tight-rope walkers. Isaiah has a vivid imagination that he has absolutely no problem sharing with others. The past few days, that imagination was put to use in new ways - imagining what we were learning about. I hope that he sees that school isn't just boring stuff, but it is fun . . . I hope we can keep it that way. =0)

This is a "bat-wheels" =0)

Well, I really just wanted to show you some of the pictures from this past week that didn't quite make it on the blog yet. I also have a song to share, too . . . but that will have to wait a bit. =0) It's nice to blog about something other than health and prescription issues! =0)

Speaking of health, things are about the same: the normal swelling, flushing, itching, leg pain, sleep issues, etc. Everything is pretty much "normal" . . . for us. =0) God is good and has been answering our prayers!

Until then, here are a few pictures of Brikey the (toitle) tortoise and a curious grasshopper. =0)

Oh, yeah . . . I forgot . . . the quote. It was from the Princess Bride when Inigo was excited to finally have the opportunity to meet the six-fingered man (who killed his father): "there will be blood tonight!"

Stay tuned . . . .

2010-08-13T15:11:00.003-04:00

. . . for "there will be [logging] tonight!"

(Ha-ha-ha, chuckle-chuckle - yes, that was a spin off of a quote from . . . what movie, though? Can you guess?) ;0)

"A Good Play" - Pretending Time in Kindergarten!

2010-08-11T14:59:00.006-04:00

(from A Good Play, by Robert Louis Stevenson)

We built a ship upon the stairs

All made of the back-bedroom chairs,

And filled it full of sofa pillows

To go a-sailing on the billows.

We took a saw and several nails,

And water in the nursery pails;

And [Isaiah] said, "Let us also take

An apple and a slice of cake";

Which was enough for [Isaiah] and me

To go a-sailing on, till tea.

Arrrrrrrrr! =0)

School Days (& Aquamarine)!

2010-08-10T00:37:00.000-04:00

Look who is in kindergarten!

Isaiah had his first official day of school! I can't believe my baby is now in kindergarten! Time flies by so fast - cliche, I know. =0)

If you haven't been following the blog long, Isaiah isn't attending school in a traditional setting because he is at a very high risk for anaphylaxis (the doctor's words). Isaiah's doctors have stated that they do not want him in school until we can figure out how to prevent his regular occurances of anaphylaxis (and better manage the allergies). Since Isaiah has mastocytosis on top of severe allergies, his body is way too sensitive. Basically, the allergies irritate the masto, and the masto irritates the allergies - they sort of make each other worse than they should be. Since Isaiah's body can't handle all of the allergens introduced in a school setting (food residues, pet danders, temperatures, etc.), Isaiah is homeschooled through K12 (an online private school that also offers public schooling).

Anyway, Isaiah did such a wonderful job answering questions and following directions. He really enjoyed the online portion of school (more than the written portion . . . ). =0} He did write his name several times today, though! (I did forget to post that he wrote his name for the first time at VBS just a few weeks ago!!! . . . yes, I have a picture of it, too.) =0)

He did have a meltdown later today, but it was to be expected - his schedule changed. This child has always had to have a schedule and things had to be just right for him. I have to say that I expected it to happen earlier in the day, and it did look like that was going to be the case, but he handled today rather well. This evening, he just lost it! Poor guy. He'll do fine once he catches on to the new routine. Oh, yeah . . . and he hates all the writing, cutting, and sticky glue (don't touch the hands!!!). =0)

K12 is actually a really good program. The curriculum follows the regular public school curriculum, but it seems to cover a bit more. He did about 4 hours of school today, working on math, language arts, phonics, and handwriting. Those are actually going to be the subjects he does every day. Later, he will do science and history twice a week and music once a week (my favorite subject). =0)

On to Aquamarine . . .

(One of) My boy's favorite color(s) . . . =0)

(okay, so I just realized the fish, a few stars, and the stone on the helmet are the only things with aquamarine on them . . . at at least I tried) =0)

And he looks so stinking cute in it too! =0)

He's also wearing his new blue jeans from Soft Clothing . . . but only to carry on a tradition (sort of . . . a new tradition?). =0) You see, I wore a denim dress on my first day of school. Since Isaiah can't stand blue jeans, Soft Clothing had the perfect pair of denim pants for him (which he loves, by the way). =0)

Anyway, I just couldn't wait to share these with you. =0) I have more to post, but they'll have to wait for now. I'm pooped! =0)

As far as an update on the lab results and MRI . . . we are still waiting to hear. They have the MRI results, but they want to wait and discuss them with us after all the labs come back. This Wednesday will make it 4 weeks since the labs were drawn, and the labs were supposed to be back in 4 to 6 weeks. I'm hoping they come in this week . . . at least the MRI results can't be all that bad, right? =0)

SPLASH!

2010-08-09T21:15:00.004-04:00

I just love this photo! =0) When I found out iheartfaces was doing a Surprise! photo contest this week, this photo popped into mind. =0)

This photo was taken a few months ago while we were in St. Pete for another appointment at All Children's hospital. He was having so much fun swimming that day! =0) It's the one thing he loves about St. Pete because it has nothing to do with doctors! =0)

Well, I chose this one because, yes, he was certainly surprised (he got more water in his face than he anticipated) and it really came out quite well! =0) I just love how his face is so clear in the photo.

I know I'm biased, but I just love that face! =0)

Soft Clothing Back to School Giveaway!!!!

2010-08-04T13:38:00.005-04:00

I am so excited to share this with you guys - Soft Clothing is having a giveaway on school clothes and other items! If you have a sensory child, you know how difficult it can be getting (and keeping) them dressed everyday. Soft Clothing is a company that makes clothes just for kiddos with SPD (Sensory Processing Disorder).

If you remember a bit ago (April to be exact), Isaiah won a set of clothes from Soft Clothing from Hartley's blog. Isaiah loved the clothes! Of course, it was too warm for him to wear them at the time, but he will be able to wear them in just a few months (I hope . . . if it ever cools down, that is!). =0)

Anyway, we also recently purchased Soft Clothing's blue jeans - soft, non-blue jeans that look like blue jeans. =0) They're wonderful! Isaiah already likes the thought of not having to wear "icky" blue jeans this winter. =0)

So, what is in store for the winner? Just take a look:

1 Grand Prize worth over $250 will be given:

3 pack of Soft Sensory Tees in color/size of your choice
6 pairs of Soft Seamless Socks
"This is Gabriel Making Sense of School" by Hartley Steiner
Lands End Uniform Backpack
Classpack of Crayola Colored Pencils
Tactile Fidget
Desk Buddy Sensory Bar
6-Pack of Mead Spiral Wide Ruled Notebooks
4-BG Flash Drive
12-Pack of Crayola Washable Fine-Tip Markers
Peltor Junior Noise Protector Headphones
Classic Pencil Grip Pencil Sharpener
4-Pack of Sharpie Highlighter Pens
3-Pack of Pink Paper-Mate Rubber Erasers
2 Mead Classic Composition Books
Plastic Hinged School Tool Box
Max's Mud-Natural Sculpting Dough
Pocket Stixx Oral Motor Tubes

WOW! How awesome is that?

If you are interested in entering the contest, just click on the link and head on over:

http://www.softclothing.net/products/sale/giveaways/

And, I can't post without a picture (from April - I'll post the new jeans soon):

Meet Brikey.

2010-07-29T16:18:00.005-04:00

"B-r-i . . . k-e-y . . . T-o-r-t-oise" never mind, that soooo doesn't work.

This is "Brikey" . . . the toitle (the tortoise). =0)

Brikey is our unofficially adopted wildlife refuge tortoise (Isaiah named . . . it). You see, Brikey comes once a year to visit our "backyard" to build a nest. While Brikey is here, he (or she . . . kind-a hard to tell), comes to our back gate and waits for us to feed . . . it. =0)

Apparently, it's not illegal to feed the nesting turtles . . . I mean, tortoises. =0) In fact, the park rangers have even given us a list of approved foods for Brikey . . . of course, the list also says that the tortoises aren't pets, should not be embarrassed by being talked to like a baby, etc. Although, I must say, Brikey likes the attention of being "baby-talked" . . . spoiled toitle. =0)

Brikey knows when the humans are out and about and makes a "run" toward the fence to get his (or her) food. Brikey knows that if he (or she) stays at the gate long enough someone will bring watermelon, apples, grapes etc. to the fence for a free smorgasbord. And, of course, we oblige. =0) If you stand near Brikey long enough to watch him or her eat all of the offered food, Brikey will begin to chase your toes . . . well, at least it looks like Brikey is chasing your toes. I don't stand there long enough to find out - I like my toes and wouldn't want to lose them to a hungry tortoise. This tortoise will follow you - he (or she) demands food and is surprisingly fast! =0)

Well, that's Brikey. Brikey the turtle . . . tortoise . . . toitle. =0)

Over My Head

2010-07-19T20:08:00.003-04:00

This photo was one of my favorites (yes, I have too many favorite pictures of Isaiah) from our Spring/Easter photos. My dad has been encouraging me to enter some of my photos, so . . . here it goes. =0)

The idea for this week's contest is to enter a photo that fits with the theme "Over My Head". Well, I went through all my photos (at least the more recent ones) ;0) and came across this one. The flowers are over his head . . . at least that's what he was trying to get them to do, anyway. =0)

MRIs & ER Visits

2010-07-19T18:17:00.000-04:00

Sorry if you are reading or getting this twice . . . I accidentally clicked publish and I wasn't even finished. =0}

To start off, the MRI went well. Isaiah handled the sedation well with few complications (he had a bit of an issue with coughing and itching as well as low blood pressure . . . and he needed a bit of oxygen to keep his sats up), but no anaphylaxis!!! God is so awesome!

After the MRI, we stayed close to Arnold Palmer . . . just in case. We had the privilege to stay in the Ronald McDonald house next door to the hospital with some amazing little people. It was heart-breaking, yet so inspiring, to see so many loving families with such brave children. Hearing some of their stories just broke my heart and made me so thankful that we do not spend more time in a hospital or in doctor's offices than we do.

Since Monday's sedation and MRI, Isaiah has been having a few speech and appetite issues. Basically, Isaiah isn't saying his r's at the end of his words and he's not eating very well. While the speech thing is cute, it's totally not Isaiah. R's haven't been that much of a problem for him, until now. Hopefully, it's just a fleeting thing that will go away quickly. The appetite thing, well, that comes and goes . . . so it's really not all that new nor troublesome at this point. However, the child usually eats very well when he feels good! =0)

On Wednesday, Isaiah's neurologist called to tell us that we needed to go back to the hospital and have the labs redrawn!!! The labs had to be drawn while fasting and they needed quite a bit of blood (and convincing this child to pee in a cup is like making a donkey walk in the direction you want him to go). =0} So, the labs were redrawn, much to Isaiah's dismay (poor guy!), and now we wait for a few weeks for the results to come in - the MRI results should be back sometime this week.

Everything was going well until Saturday. Isaiah was sitting in a chair, watching a movie, when I noticed that he was itching a lot. As I got closer to him, I noticed that his lips were a tad swollen and he had a rash on his face. Within 5 minutes, we were out the door with a child who had turned dark red (almost purple) with a rash everywhere, swollen and blistered lips, slightly swollen tongue, and itchy throat.

At the ER, the triage nurse took one look at him and said, "has he been out in the sun for too long?" He was so red! When I explained what was going on, we were whisked to a room and Isaiah had an IV placed and he was hooked up to the hear monitor. The triage nurse did an excellent job getting things moving along quickly and making sure everyone was doing the job they were supposed to be doing (thanks, Tracy's hubby). =0)

He is doing well, now - sent home after observation, as usual. He is still talking a little funny (still has problems with that r), and has flushed a few times, but he's doing well.

God is faithful, even when things don't seem to be going in the direction we would want them to go. God reminded me of the whole "walk by faith and not by sight thing" over the past few weeks. Regardless of how things look, we need to have faith that things will be okay. When you look at a forest, do you only look at a tree? How about a leaf? God sees the big picture, even when we can't. He knows the why's and why not's. As much as we want to know those answers, sometimes we need to just have faith in His knowledge and let go - He's got it under control. Worrying won't do a bit of good - it won't allow us to get any closer to the answer (sometimes the answer can even be clouded by all that worry). Don't get me wrong, I'm still human and a mother at that!

Whatever God's will is for Isaiah's life, I know that it will bring Him glory. Honestly, that has been my prayer for Isaiah since I knew he existed - that he would be used by God, and that he would allow God to use him. These tests aren't pointless, but whatever the outcome, God's already using it to bring glory to His name.

How I pray for my life to do the same - not my will, but His - for His bigger purpose and plan, not just my little leaf point-of-view.

I will have more to post later - good stuff . . . school stuff. =0) I'll give a little hint . . . "aquamarine and green." =0)

Happy Independence Day!

2010-07-04T22:59:00.004-04:00

We celebrated just like anyone else . . . except with ear plugs. =0) (sorry, no pic of Isaiah in his ear plugs and muffs - he was too cute, though!)

Oh, yeah . . . and there was cake, too! =0)

New Date for the MRI

2010-07-03T16:49:00.004-04:00

I keep meaning to post this, but keep losing the opportunity. =0}

Since I have had a ton of questions about the MRI, I have been calling Isaiah's doctor's office and Arnold Palmer just trying to make sure there is nothing more I need to do. Well, in calling Arnold Palmer, I left a message with the scheduling nurse . . . who called me back . . . and rescheduled the MRI. Apparently, not everyone who is on the waiting list for cancellations is serious about being on that list. So, in my "mommy psychosis" (aka, just wanting the thing over with instead of waiting 2 months), I let the nurse know that I was serious about being on that list. That said, Isaiah's MRI was moved up to July 12th . . . which is now almost a week away. Of course, I found this out June 24th. I just forgot to write a post about it. =0}

Just figured I would mention it and let you guys know it was coming up much sooner than expected. =0)

My Baby Turned 5!!!! =0)

2010-06-25T18:23:00.000-04:00

I can't believe that 5 years ago (already!!!) you came into the world. I prayed for you for so many years, and now you're here - God's promise to me . . . and so much more. You have taught me so much about life and you have helped deepen my relationship with God. You have taught me more about what it means to follow and rely on God than I ever learned before you were born. You are so special to me, my little hero - there isn't a day that I don't thank God for you! I pray that God continues to use you, that you grow in Him, and grow closer to Him with every day you're here on earth. May He continue to bless you and give you joy, peace, and good health.

Happy birthday, little man! I love you!

Happy 48th Anniversary . . .

2010-06-23T10:22:00.000-04:00

. . . to the most wonderful parents!!!

Praying for many more years full of love, blessings, joy, and peace.

You guys are such blessings - love you so much!

MRI - brace yourself, long post. =0}

2010-06-22T19:51:00.007-04:00

Well, to catch some of you up who haven't been on Facebook . . . =0}

Isaiah had an appointment with a neurologist this past Thursday. At the appointment, the doctor noticed (as did I) that Isaiah has no reflexes in the lower half of his body. He tried several times to get Isaiah's muscles to respond, but to no avail. Upon further examination, the doctor noticed that Isaiah was inflexible (with limited flexibility in his ankles) and his hamstrings are tight. We had noticed that Isaiah walks on his tiptoes, and he didn't begin to crawl because of his stiff little legs, but had not really thought too much about it . . . now we know.

However, the doctor (and I) want to know why. Especially since his upper body is so loose and he has less muscle tone in his upper body. He is also looking for causes of Isaiah's autism symptoms. Basically, these tests will give us a further diagnosis for Autism (high-functioning/Asperger's). We will also be seeing a geneticist sometime in September (there was an appointment for this week, but . . . I'll explain in a minute). =0)

However, there is a bit more than that going on. Generally, with autism, people are flexible and loose (like Isaiah's upper body) - they don't have the tightness and loss of reflexes. So, that adds some new speculations as to what's going on with Isaiah. The two possibilities are encephalopathy (in short, a form of brain damage) and spastic diplegia (a form of Cerebral Palsy). Now, I know that Isaiah is the same child I have always loved - the same with or without these tests. However, I would like to know how to help him - hence the testing.

That brings me to the testing. =0) Isaiah is supposed to have an MRI . . . with sedation (along with blood tests being drawn during the MRI). If you have been following my blog for at least a year, you know that the last time Isaiah had a procedure with sedation he anaphylaxed twice in one week - the episodes were 3 days apart, 24 hours after the procedures. We still don't know if the anesthesia or the procedures (endoscopy and sigmoidoscopy) caused the anaphylaxis.

Initially, Isaiah was to have the MRI today at the local hospital. However, at the "pre-op" physical yesterday, Dr. B. decided that it was just too risky to be done there. I can tell you, I shared the same sentiment. =0) So, he had the MRI rescheduled at Arnold Palmer - the same hospital that Isaiah had the last procedures. It's a children's hospital and a trauma hospital at that. I am relieved and a wee bit freaked out at the same time - his exact words were, "because of the risk of severe or fatal anaphylaxis . . . " Ugh, no matter how much you know that anaphylaxis can be fatal, it's still hard to hear . . . of course adding on top of that the speculation that your child has some type of brain damage doesn't help . . . and the whole eosinophilia news (I was told that eosinophilia can cause organ damage and that Isaiah's body is just attacking itself - that was in the conversation with the allergist . . . it just took a bit to sink in).

So, what caused this suspected brain damage? No idea. Maybe the multiple times Isaiah has anaphylaxed in his life, maybe his large birth weight, or the fact that something may have actually gone wrong during labor - there's no way to tell right now. He's the same Isaiah I have always known, so I'm not mournful. I just want to know what it is and how we can help him. Some of his leg pain could be coming from this - I just want to make it stop for him (he hasn't been sleeping well the past week and some change because of leg pain).

If you can't tell, I'm honestly just worn out. I'm not necessarily sad, just tired. Not being able to make his pain stop makes it worse . . . and knowing that we still don't have all the answers for all of Isaiah's health issues bothers me.

I know that God is in control and that He is watching out for Isaiah in ways that I cannot. He knows all the answers and understands Isaiah's body better than I can. I'm so glad that I can rest in Him, confident that He's able to take care of all of this. I am just so grateful that He has blessed me with this little guy and given me an opportunity to learn more about how to depend on Him.

I will keep you posted, as always. =0) As for now, Isaiah's appointment is in August, but we are on the list to be called if there is a cancellation . . . talk about being ready at a moment's notice. =0) Please pray that we can get our appointment sooner and that everything goes smoothly - the waiting can be rough. =0}

Oh, by the way . . . Isaiah, my baby, will be turning 5 on Friday (at 6:23 pm, to be exact)!!! =0) Trust me, there will be a post. =0)

Lab Results . . .

2010-06-09T21:44:00.005-04:00

Much to Isaiah's dismay, we had the labs drawn Monday afternoon . . . he was not a happy camper (as he told me several times while we were there), and I had to bribe him with Lego people. =0) Anyway, the labs are back, and Isaiah has 3 new Star Wars Lego people to add to his collection (which were supposed to be saved for his birthday). =0)

I must say that my heart sank when the doctor called - she wasn't supposed to call unless something was wrong. Her calling, especially so soon, just made my mind whirl a bit. She started out saying, "I have the lab results," and continued to talk a little. She sounded so upbeat, but that really didn't sink in until she said, "everything looks normal." Yeah, Mommy's heart had already stopped beating, so the eternity it took her to get to that part didn't sink in until a few minutes later! ;0) His platelets are within a normal range and his kidneys show no signs of infection or damage! God is awesome! I am relieved to know the lab results - I was thinking, "two weeks????" =0)

The "bad" was about his eosinophils . . . they are still very high (eosinophilia). Not unlike the past tests, so I wasn't surprised by that (honestly, I hadn't thought about them being high, low, existent or nonexistent). =0) As far as the petechiae . . . well, the high eosinophil count can cause that, we just have to watch him for anything more unusual (his petechiae wasn't just from scratching, it was in random places all over his body). Just in case you're curious about high eosinophil counts and petechiae . . . don't do a Google search. I wish I hadn't. =0} Too much info. and a tad scary. Isaiah is healthy and his labs aren't showing anything scary, so he's good. =0) So much for just trying to understand what "eosinophilia" means apart from too many eosinophils! =0} (Eosinophilia actually goes along with systemic mastocytosis . . . another reason why the labs were no surprise)

I forgot to mention the last time I posted that Isaiah finally gained some weight! At the appointment last Friday, he's at 47 pounds . . . . and he is at 48 inches! =0) He's finally tall enough to ride the flight simulator at Kennedy Space Center (poor guy seemed stuck at 47 inches for a while) . . . but we'll still have to wait for cooler weather to go back . . . maybe September. =0) I was totally praying for him to grow so that he could ride the thing . . . he was so disappointed when we went to ride it and he was too short. I can't wait to explain it to him . . . but I want to keep it a wee bit of a surprise! =0) I'm soooo saving up for a little astronaut outfit for him when we go there (yeah, when he's older he'll be mad at me - 'cuz you know I'm going to take pictures - but, secretly, he'll be happy). =0)

I just had to share the news about Isaiah's labs with you guys - I know you guys had been praying. Our God is so amazing - He knows what He's doing. Even if we haven't seen Isaiah's full healing right now, we can still see God working in the scary situations that arise with Isaiah's health.

Quick Post . . . =0)

2010-06-04T16:08:00.014-04:00

I know, you're thinking, "quick post? Yeah, right!" =0)

Maybe you're right . . . I should think realistically. =0)

Anyway, Isaiah had an appointment in St. Pete this morning. We started our trip yesterday and encountered severe storms in Orlando - almost constant cloud-to-ground lightening, blinding rain, loud thunder, aquamarine patches in the sky, hail . . . but we arrived safely without incident (God is our protector).

The Allergy/Immunology/Rheumatology Clinic shares a floor with Nephrology, Hematology, Oncology, and Nutrition at All Children's. We usually see some really sick kiddos there - it always tugs on my heart and makes me thankful that Isaiah is in as good of health as he is in. Seeing their faces just breaks my heart. One particular case, today, just really got to me. Isaiah did not want to be there, today - he doesn't want any more sticks. =0( So, as we were going back for the appointment, he was saying, "NOOOOO!" One young lady (who was maybe 13 or so) commented that she didn't blame him, she didn't want to be there, either. She had come out of remission and was "losing" her battle with cancer. It broke my heart. I wanted to give her a hug so badly and just make everything okay for her. Thankfully, she does know Jesus - I know that He can make everything okay for her. Better than that, He can make everything great for her. Until then, I pray that she doesn't have to feel pain and finds peace, comfort, and healing through Him; the only one who can provide it for her. I didn't catch her name, but please keep her and her family in your prayers - God knows who she is and that's the important part.

Isaiah is doing well, just the usual flushing and such (and not sleeping, leg pain, the usual for him). He has developed petechiae, again. I noticed it yesterday morning and it has gotten worse since then. The doctor saw it and has ordered the usual blood test just to check. He has quite a bit more of it than he did last time. He has patches on his tummy, on his shoulders, neck, under his arms, on his upper arms, upper legs (with newer spots on his calves), and his tushie. At least it's not itchy like eczema. =0) While the doctor was examining Isaiah and his dots, he told her, "you have the peh-tiki-way on your back!" =0)

Because of all the swelling that Isaiah has been having, she also ordered a test just to check his kidneys . . . just to make sure they're working the way they're supposed to. He has never had a UTI or anything, so I'm sure that one will be just fine. She just wants to make sure - she's rather thorough.

Apart from that, it was just a regular appointment at the AIR clinic (I think that's so funny - Allergy/Immunology/Rheumatology = AIR). =0) The doctor finished the documents needed for school this year. Just in case you missed the school discussions, Isaiah's doctors do not feel that school is the best option for him right now - at least the going to the building part. Basically, the school district needed the doctor(s) to fill out a form stating why they want him on homebound school for the next year. All of that is completed and ready to be sent in. =0)

I have already started the sign-up process for K-12 (I was worried that homebound, which offers a teach twice or so a week, wasn't going to be beneficial for Isaiah). K-12 seems to offer the best option - allowing Isaiah to work on a computer for some of the time, meet with a teacher every day (online - web cam), and learn on his level and at his own pace.

Well, I think that's all for now . . . it's beginning to storm outside, again. =0} Ah, life in Florida during the summer. =0)

I really haven't fallen off the face of the earth =0)

2010-05-17T21:08:00.021-04:00

And it has taken almost a week to write this post! =0)

Things have been, well, busy here. =0) Nothing out of the ordinary, nothing bad, just busy. I feel like it has been a long time since I have written anything, so I figured now would be a good time to post something. =0)

The summer temps have come to FL (except it cools down nicely in the evening), which brings the lovely smell of the ocean, the beautiful flowers, and (unfortunately) reactions for Isaiah. =0( While most people are spending more time outside to get over cabin fever, we get to spend our time indoors avoiding the heat, mosquitoes, and all the issues that come from it. =0}

Anyway, since Isaiah's reactions have come back again this year, we canceled our summer vacation. Oh, how I need a vacation! It's okay, though. We'll get one eventually, but it will be when things cool down again (I'm thinking sometime in November???). Even going north during the summer won't give Isaiah much relief, seeing as the traveling can be just as bad. Not only that, but it is difficult to find hotels that are within our price range and that do not allow pets (pets in a room = reactions, including anaphylaxis, for Isaiah).

The heat has caused some issues for Isaiah that have come very close to an ER visit. A little over a week ago, we decided to watch the shuttle launch. We had planned to wait out our time in Walgreen's, but since we didn't get to leave early enough to get a parking space, we had to walk to Walgreen's . . . which is about a mile or so from our house. Since Isaiah has a cooling vest and a stroller, I figured we'd be okay to get there and cool off inside Walgreen's. I was wrong - Isaiah began flushing and became lethargic (a flashback to last summer) even with the vest. He did see the shuttle launch, but he could have cared less. I felt so bad for the little guy - he LOVES the shuttle launches (he would so be an astronaut right now if he could be). Just this one outing has brought on several days of itching, increased flushing (more flushing than we've had since it started warming up), more than usual swelling, a purple spell, headaches, body aches, sleeplessness . . . grrrr, those stinkin' mast cells! God is awesome - we have not had an ER trip since January/February . . . apart from the nose thing =0}, but that was not for anaphylaxis (God is good)!

We also had a bit of an issue with the Zyrtec/Tylenol/Benadryl recall. Yup, all three of them were an issue for us. Isaiah had almost taken 2 bottles of the recalled Zyrtec (we go through a bottle a week), a bottle of Tylenol, and a good portion of the Benadyl. Good thing it was a "voluntary" recall. =0/ The company did reimburse us for the meds, but we needed to find an alternative for Isaiah. The Benadryl was a no brainer - just use the non-recalled Benadryl. The Tylenol was easy, too. The Zyrtec . . . not so much. Since Isaiah can't swallow tablets yet, and the generic brands have ingredients Isaiah is allergic to, we had to find something to give him that would be safe for him. So, we now use Xyzal . . . which the insurance won't cover, but it's at least cheaper than buying 4 bottles of Zyrtec a month. =0) Xyzal seems to work almost as good as Zyrtec, too! (YAY!)

Isaiah also registered for school . . . MY BABY IS GROWING UP!!! I have mixed emotions about school and Isaiah - I'm excited he has reached another milestone in his life, yet sad that his schooling is "modified." Because of all the allergy issues Isaiah has (and his very high risk for anaphylaxis), his doctors feel that it would be best for Isaiah to receive schooling at home. Since he is too advanced to hold out one more year (not that it would make that much of a difference without God's intervention), we have to put him in some form of schooling. He really wants to ride a big yellow bus, but even if he could go to school, we live too close to the school . . . he would have to walk (which means, we would have to drive him to school in the morning).

We at least have a choice between home bound (where a teacher comes in twice or so a week) and K12 (online public school - 5 days a week). So far, it seems that K12 will be the winner. =0) We can also tweak the program for him so that he doesn't get bored - that's the part I like. It's computer-based, but it also includes hands-on activities that the school district sends to you. It really looks like a neat program . . . and Isaiah will still have Awanas . . . and hopefully some other kind of social activity (like gymnastics or something).

On to Mother's Day . . . we had a good day. We relaxed, we played, we chatted with my cousin and his girlfriend who came to visit (yes, Bill, I posted your picture . . . see 2 paragraphs below). =0) Which brings me to the pictures for Mother's Day . . .

Everyday is just so much brighter when I see that smile and those sparkling eyes! I just love being a mommy! =0)

Since then, we have had fun with Bill and Elma (my cousin and his girlfriend). It was nice to see them - I haven't seen Bill in quite some time . . . probably 10 years or more? I even got to introduce him to Madea. =0) Yup, we have yet another Madea fan in the world. =0)

(He sooooo did not want his picture taken . . . but no one escapes my camera!) ;0)

(She didn't know I was taking her picture) =0)

As far as my dad . . . he's doing okay. He found out that he had taken too much of one of his medicine (he was taking twice the amount the doctor prescribed) . . . which explained why he was sleeping sooooo much. God protected him and is fine now that he stopped taking too much. Of course, now he is out of it until sometime next month. =0/

He has been having more problems with his memory lately, as well. He is getting lost when he drives . . . and for a person who used to be a good driver, he scares the bejeepers out of me everytime I'm riding in the car with him. This past week, instead of driving with a green light, he sat there . . . with cars behind us . . . and didn't move. Poor guy. Then, he almost ran a red light at another light. I'm not writing any of this to make fun of him, though we try to make light of it with him. It's more or less just hard to see this happen to him - and he notices he's not the same and takes it quite hard. He knows it's not just "getting old" and that this leukemia is just trying to make itself known.

My dad also got a new cell phone (a free upgrade with the account), which has been a trip! =0) He hates technology . . . and now he has a smartphone . . . and not just any smartphone - a touchscreen Android phone. =0) It has been so much fun watching him get used to the thing. Fu-u-nny! If you know him, you'll have to ask him about it. =0)

We're still standing in faith, as always. Apart from God, I don't know how anyone can deal with problems without going completely insane. We know that God is awesome and able to do the impossible. He not only hears our prayers, but He also answers them. God is faithful and keeps all of His promises and covenants with us. It's so wonderful to serve a God like Him - glad there isn't any other.

Until next time . . . . =0)

Wordless Wednesday . . . sort of =0)

2010-05-13T00:13:00.003-04:00

My Little Man is My Hero!

2010-04-27T22:52:00.006-04:00

Today, Isaiah had yet another appointment . . . this time with an ENT (a doctor he has never actually seen before . . . the doc is right across the street from Isaiah's PCP). =0) Turns out, Isaiah's nose was broken . . . our favorite hospital (insert sarcasm) seemed to misinterpret the x-rays . . . it was quite noticeably a break. The doctor wasn't too pleased with whomever looked at the x-rays (though, I have to say that the doctor we saw was quite nice . . . but she didn't look at the x-rays). All he really did was look at Isaiah and knew that his nose was broken. The exam and x-rays just confirmed his suspicions.

So, after the doctor's diagnosis, I sat there thinking, "here comes the anesthesia." Well, I thought that the doctor was going to set us up for surgery, but needed to look at Isaiah's nose a bit more. He had me hold Isaiah and mentioned that Isaiah may feel a bit of pain . . . examining a nose that's broken may have something to do with that. =0) Then CRACK POP CRACK . . . he reset Isaiah's nose! AGH!!! I thought I was going to toss my cookies, if you know what I mean.

Isaiah did hold my arm a bit tighter, but I had no idea why until I heard that. Isaiah did not even whimper!!! He had tears streaming down his face, grimaced a bit, but did not make a sound! Mommy, on the other hand . . . while I didn't scream, I was making a few noises to keep from losing my lunch. =0}

I am so proud of my now straight-nosed little guy. I know that he has been through a lot, and that he is one tough cookie . . . but I had no idea he could tolerate that. It makes me wonder how much pain he's in (and how often he's in pain) and just doesn't say a word. Stupid masto (more on this later).

We have a few "reshaping" things to do until our next appointment on Friday. Hopefully, this is the end of the nose fiasco. =0)

I have oh so much more to write (yeah, I can hear the sighs of relief), but I will save it for another day. =0)

Oh, yeah - one last thing . . . Isaiah is officially a Kindergartner . . . (more later) =0)

Memorable Moments Monday =0)

2010-04-12T21:55:00.005-04:00

Considering I couldn't wait for "Wordless Wednesday" (or almost wordless, anyway), I decided that a Memorable Moments Monday was needed. =0) So, why was I soooooo eager to post??? Well, remember that I mentioned Isaiah had won an outfit from Hartley?

Here are the new, seamless duds from Soft Clothing. =0) They have really nice clothing (it's soooooo soft!) and are working on adding even more clothing soon (like seamless socks). So, after looking at the pics, take a look at what they have. It's also a great place to find Autism (ASD) and Sensory (SPD) resources.

Mr. Joe Cool . . . ummm, I mean, "Herald Angel" =0)

"Hello, world!" =0)

Groovin' to his own tune . . . =0)

Sweet little guy - doesn't this photo just make you want to grab him and hug him? =0)

What have we been up to???

2010-04-09T20:58:00.008-04:00

Well, after a busy 2 weeks with all sorts of appointments (not necessarily doctor's appointments, though they were a large portion of them), we have finally gotten back into our usual routine . . . mostly. =0)

Starting with Monday, 2 weeks ago, I had my appointment for my ear . . . it's healing well. Still can't hear very well, but it's getting better at least. =0)

On Tuesday, Isaiah had his appointment in St. Pete - the check-up at the Rothman Center. That went . . . as expected. =0) Basically, the doc wants Isaiah on the bigger dose of the med, but I said it's not gonna happen . . . he sleeps way to soundly (which is dangerous because Isaiah usually has his episodes of anaphylaxis in the middle of the night). S0, the doctor recommended giving half the dose in the morning and half at night . . . ummmmm, side effects do include an issue with overheating . . . dare I mention last summer? =0) So, I'm thinking that rispridol may be a thing of the past. Isaiah's ped didn't like the idea of rispridol anyway, so we are going to make an appointment with a doctor he recommended that is 20 minutes away (as opposed to 3 hours). =0)

Anyway, back to St. Pete . . . the doctor was still trying to get all of the labs back, so she had us wait in the waiting room while all the faxes were coming in. After about 30 minutes, we were handed a few papers and told to make an appointment to see the pediatrician as soon as possible. WHAT? I can't say that I didn't freak out a little . . . especially while I had time to think about that proposal . . . so, on Wednesday, I made an appointment for Thursday (we were travelling 3 hours home from the appt. on Wed.). =0)

On Thursday, we went to see the ped. He said that he saw Isaiah's file and was thinking, "Oh, no. What's going on now?!?" =0) Well, after reviewing the labs, the doctor looked at me and said, "I didn't see you." What? You see, everything is "fine". Basically, Isaiah's triglycerides are high and some of his other counts are off a bit. Considering it wasn't a fasting test, and Isaiah's extremely restricted diet, there's nothing to worry about. He said that we'll watch the counts, but there's nothing we can really do about it all . . . not now, anyway. If they get worse, we may have to look at new meds or something, but there's nothing that can be removed from Isaiah's diet. If we removed anything else, Isaiah would need a feeding tube, which is a HUGE issue by itself. So, we can't do anything, they weren't that high - don't worry about it. Ehem. =0) And, as far as the doc was concerned, he didn't see us and no bill would be sent to the insurance companies. =0)

The rest of Easter break had other appointments going on and all the preparations for Easter (including ripping and downloading songs from Isaiah's CDs to his mp3 player . . . his Easter-therapy present). =0) Can I say just how long that takes? Sheesh, I'll use a CD player any day!!! =0)

Oh, yeah . . . and an impromptu "photo-shoot"/play date with our neighbor's grandchildren (whom they hadn't seen in a little over a year . . . long, sad story, but I was honored that they shared a bit of their time with us).

Somewhere in this break, Isaiah won an outfit from Hartley's Life With 3 Boys (I will send and post pics soon, I promise!) =0) and also won the RDD (Rare Disease Day) contest through MastoKids (thanks everyone!!!). Isaiah was sooo excited - he had no idea what he had won, he was just excited that he won! =0)

That brings me to this week. More specifically, yesterday. We had our usual "meeting" with Isaiah's local allergist (she's really just there for whatever we may need in between our appointments with All Children's, so she needs to know what's going on). Everything was going smoothly - Isaiah was even calm, thanks to the mp3 tunes!! =0) As we were leaving, Isaiah had a spill in the parking lot . . . it was Isaiah vs. the corner of the sidewalk. The sidewalk won . . . sort of. =0)

As I was putting Isaiah's bag in the car, Isaiah decided to go toward the front of my car . . . back toward the office, where he fell, hitting his nose right on the corner of the sidewalk. When I turned around to see what happened, I saw Isaiah laying on the ground . . . face down, with part of his head on the sidewalk. When I picked him up and turned him around, he began crying (thankfully), and I noticed his nose was flat! It really didn't take very long for it to swell up, though. =0(

To make a long story short, Isaiah had trouble staying awake, so we headed for the ER. While we were there, Isaiah was having no part in trying to stay awake. The doctor thought his nose was broken and decided that he needed to have x-rays done, as well as a cat scan because he was so groggy. Turns out, the shock of it all made him sleepy and his nose . . . it's not broken! Thank you, God!!!! God protected Isaiah - it looks much worse than it is. We still may need to see an ENT, but at least we have x-rays out of the way. The doctor kept Isaiah at the hospital for a little bit (to watch him, as he tends to have swelling issues and she was worried he may have an anaphylaxis episode), but (again) God protected Isaiah and we left without further incident. =0)

For now, his nose is swollen and he has 2 black eyes to go with it. Still no major reaction (thank you, Jesus!!!).

Oh, yeah, Isaiah is on a regimen of antibiotics for an infection in his lungs . . . he hasn't seemed very sick, apart from a lingering cough (random, low fevers, but nothing completely unusual). It's not really serious, but the doctor just wanted to make sure we got it cleared up quickly before his body decides to overreact. It should also help with the rashes (eczema & other allergy rashes) that Isaiah has on his arms, legs, torso . . . tush . . . okay, so, everywhere - it's that time of year, again.

On a lighter note =0), Isaiah finished his Awana Cubbies book this past Wednesday! That means Isaiah knows (and still quotes) 28+ Bible verses (I think 34?)!!! I'm so proud of him!!! He's such a smart little guy, and has worked so hard (or shall I say effortlessly) on these verses. Even while he's playing, he quotes his verses. I love it! We have already started on the second book, so this Wednesday, he will share 4 new verses with his Cubbies leader (at his request). =0)

Did I mention the little stinker can read? He can. He can even read words like Easter and Christmas . . . all this found out yesterday after he decided to wake up in the hospital. =0) I thought he was reading . . . he was just hiding it! =0)

I'll post a video of Isaiah saying a few of the verses a tad later. =0)

Happy Easter!!! =0)

2010-04-05T23:43:00.002-04:00

Personalize your own picture slideshow

A Little Jig for Ya (Part 2) =0)

2010-03-17T21:30:00.004-04:00

Sorry for the missing . . . dancing e-card? =0) I have no idea what happened, but it's just not working like it's supposed to. So, I have posted it above this post so you can see it. =0)

For those of you getting this post by e-mail, visit:

http://sendables.jibjab.com/view/aATC0IBsydu6ABfI

Can you guess where we were today?

2010-03-13T21:54:00.007-05:00

Nope, not on the moon . . .

Nope, not on Mars . . .

Nope, not fixing the International Space Station. ;0)

Okay, so the name is on the photos. =0) (In case you couldn't see it, Kennedy Space Center . . . small print)

Isaiah had so much fun! Who am I kidding, we had so much fun (Nai-Nai went, too)! =0) Isaiah even got a chance to land a lunar module and attach a capsule to the ISS (International Space Station).

Next time, we're going to take a tour out to the launch pads . . . and maybe see a space shuttle out there (there's a shuttle launch in early April, so maybe . . . ). =0)

Isaiah even met a real astronaut! Upon meeting this astronaut, Isaiah looked at him and asked, "where's my space suit?" =0) My little stinker! Do they even have space suits his size? Anyway, my little "astronaut" had a wonderful day "at work." =0)

When he got home, he took a little nap, had dinner, and decided to find his own space suit . . . and somehow turned into Obiwankintoo . . . guess he needed a better space name. =0)

Yes, Isaiah did have a few reactions while we were there, but they weren't anything that we needed to go to the ER for. He had a few contact rashes . . . it's hard to go out in public without something. A couple of doses of Benadryl took care of the rash and stopped any further reactions. God, as usual, was watching over my little future space explorer.

In other news, I had the flu last week. As a result, I had an ear infection this week, which resulted in my ear drum rupturing in 2 places. So, on Monday (the 22nd), I will find out if I need to have my ear drum repaired. Right now, there's no pain (amazing how a ruptured ear drum actually feels better than the an ear infection), but I can't hear either. Hopefully, the antibiotics and prednisone will take care of that.

Isaiah did not catch the flu that was going through our house - I ended up wearing a mask for 2 or 3 days until I was without a fever for 24 hours. I did manage, however to bring home a cold . . . which everyone else seemed to catch. =0( No worries, everyone seems to be on the mend without any ER visits . . . apart from me. =0)

Isaiah also returns to All Children's (the Rothman Center) in a few weeks (on the 23rd). Another follow-up visit and (hopefully) a discussion of the lab results that weren't in when we were there the last time. After that, Isaiah has another appointment in May with the allergy/immunology clinic.

A Little Catching Up . . . =0)

2010-02-28T18:45:00.009-05:00

Our last appointment with the Rothman Center left more to be desired. =0) Basically, only 3 of the 9 blood tests were back - of course, the 3 that were back weren't the big tests. =0) The doctor asked a few questions, got Isaiah's height and weight, and we said goodbye until next time. So, a fifteen minute appointment after a 3-hour drive . . . yeah, not quite what we were hoping for.

I guess I expected more out of the appointment - you know, like the informational appointments we seem to have with the allergy clinic visits. It was almost as if they gave Isaiah the diagnosis of ASD and left it at that. No looking around for anything else, not trying to see if the symptoms we're seeing are masto-related, nothing. A little frustrating, but I guess we shouldn't have expected anything more - they were just doing what they normally do, there's not much else they can do.

Anyway, Isaiah started the prescribed med (rispridol) on Thursday. I can't begin to tell you how excited I am that Isaiah is FINALLY sleeping through the night!!!! =0) In over 4 years, Isaiah hasn't slept through the night (since he was about 4 months old when he began waking up every 20 minutes screaming)!!! So far, the sleep has continued. He doesn't wake up at all and he doesn't seem to twitch or cringe in his sleep! My body is still trying to adjust, as I'm sure his is too. (by the way, I took the picture on the left outside of the new portion of All Children's Hospital - they did a wonderful job decorating the place!)

Back to the appointment (I took the picture to the left outside of the new portion of All Children's Hospital) . . . since our appointment was scheduled later in the afternoon on Tuesday, we decided to take a detour to the Pier in St. Pete. It was beautiful! There was so much to take in and do. There several shops, but the best was the aquarium on the second floor! Isaiah loved it! He had so much fun bouncing around looking at all the fish. =0) Of course, it was a small aquarium, but Isaiah didn't seem to mind too much - he didn't want to leave! I think we were there for about 3 hours!!! =0)

On our way home on Wednesday, we decided to stop at Dinosaur Land . . . or World . . . whatever it was! =0) Even though it was raining, with a few bouts of lightening and rumbles of thunder, Isaiah had a blast! He loved the dinosaurs and even got a chance to dig for fossils. So, I guess our trip to St. Pete wasn't too much of a waste of time, right? =0)

On to today . . . it's Rare Disease Day! As you know, both Isaiah and my dad have rare diseases (Isaiah - anaphylaxis, mastocytosis, ASD; my dad - waldenstrom's macroglobulinemia). Well, to "celebrate" (as much as you could possibly celebrate . . . it's more of a celebration of life, really) we donned our spots for our church family to see. =0) Isaiah even helped me decorate a shirt for the occasion. =0)

God has really blessed us with life, so why not celebrate that? Seriously, there are times where Isaiah or my dad could have died, but God blessed us with more time with them. I know that Isaiah has taught me more about living than I could have imagined. Smile, even when it hurts . . . it makes you feel better. "Jesus makes everything better" and "He'll take care of it." Isaiah has even told me to "just be happy, Mommy, and then you won't be sad anymore." =0) Not only that, he has taught me to appreciate every moment, though I am still learning to seize every opportunity. The biggest lesson Isaiah has taught me is reliance on God. There have been times, on this journey with Isaiah, where I am physically and emotionally exhausted. Not that I want to give up (I am a wee bit stubborn) =0), but I just want to scream . . . and I have felt like my brain was going to snap. I have been pushed to my limits, but God has always been there to give me the extra energy, focus, and encouragement. Of course, God has also blessed us with Isaiah's quirky sense of humor. =0)

Well that's all for now. I'll keep ya posted. =0)

Rare Disease Day US 2010

2010-02-24T00:10:00.001-05:00

Clinic Visit

2010-02-09T22:00:00.014-05:00

Monday was our regular visit to All Children's allergy / immunology / rheumatology clinic. It went well - all the labs that we had done in November came back with good results . . . at least the third disease in the mix isn't hereditary angioedema . . . or angioedema at all. The test for streptococcus antibodies also came back negative (thank you, Jesus!) . . . that would be a very bad thing if his body developed antibodies to a bacterium naturally present in our bodies, but would explain the idiopathic anaphylaxis episodes (idiopathic = unexplained). Just a little info. on the strep antibodies . . . apparently, a high strep titer can cause a cross-reaction with brain tissue, causing abnormal behavior (including autism and, as suspected with Isaiah, anaphylaxis because the brain is sending wrong messages).

Right now, we are waiting for the next set of tests . . . the tests done by the Rothman Center. As of today, they are all back. However, we have to wait for the appointment (which they wanted to schedule for next week . . . but I scheduled for the 23rd). =0) While I want to know what's going on with Isaiah, I'm starting to feel like we live in St. Petersburg in some hotel . . . or at the hospital (since we seem to spend sooo much time there in appointments lately - the shortest appointment has been an hour and a half . . . the longest, three and a half!). No complaints, though - I know others really have the right to say they live in a hospital.

Isaiah was put back on Advair . . . not for asthma, but to just keep his lungs out of this anaphylaxis stuff (it seemed to help when he was on it, at least). No more steroids, though . . . they didn't seem to work anyway. =0) Really, that's a good thing - we don't want any more steroids! As far as any other answers as to what's going on with Isaiah, the doctor is just frustrated . . . she's not giving up, though. She wants answers, and so do I . . . as long as that doesn't mean we turn Isaiah into a pin cushion or Guinea pig.

On another note, Isaiah has grown a smidge since his last appointment . . . he's now a half an inch taller. =0) As far as his weight, he has lost 3 pounds since his last visit. He really hasn't gained anything over the past year, but at least he's still growing.

Honestly, I'm thankful Isaiah doesn't need a feeding tube . . . he never has, and I pray he never will. With all that he's been through, things could be worse . . . but God keeps things good. God has His hand on Isaiah, which is obvious. I was telling someone just the other day how Isaiah, even when he's at his sickest, seems to have a peace about him. Yeah, he cries when he's hurting, but he still has peace - God's peace. He can also keep a smile on his face when it also seems impossible to smile - God's joy. It's amazing to see the fruit of the spirit coming out in your child! =0) Isaiah's bravery and strength (again, God) amazes and inspires me.

I just love my little hero! =0)

Funny Fridays =0)

2010-02-05T20:40:00.005-05:00

Isaiah: "Mommy!"

Me: "Yes, Dear."

Isaiah: "Mommy!"

Me: "Yes, my Love."

Isaiah: "Mommy!"

Me: "Yes, Isaiah. What do you need?"

Isaiah: "Mommy!"

Me: "Isaiah, Mommy said, 'What?'"

Isaiah: "Mommy!"

Me: "What?!"

Isaiah: "Oh, nothing. I was just practicing."

=0)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And a Little Update

Isaiah is doing okay since the last episode. He is still coughing and is sleeping a lot, but that's not too surprising since his lungs were involved. We have an appointment at All Children's on Monday, so if he's still having problems, I'm sure the doctor will help him out. In the mean time, Isaiah is back on Advair (an inhaled steroid) to help his lungs out a bit, even though he does not have asthma. As the local doctor says, "that's just part of the mystery of Isaiah." =0}

Oh, yeah . . . February 28th is Rare Disease Day. It's interesting that both my son and my dad have a rare disease. In light of RDD, and to help raise awareness for Mastocytosis, a MastoMom's sister is donating a portion of the sales to Masktokids.org! So, if you need to do a little shopping, take a look at www.snugglebug-boutique.com.

Well, I guess I'm done writing for now . . . Isaiah just told me, "turn off the com-poo-ter, I'm hungry!" =0) Glad he has his appetite back! =0)

Way to Go, Isaiah! =0)

2010-02-03T20:54:00.003-05:00

I am so proud of my little man tonight. Isaiah has earned his second patch as an Awanas Cubbie!!! That means he has learned 5 Bible verses (and a motto) over the past 3 weeks! Here's the list so far . . .

I John 4.10 - "God loved us and sent His son."
Cubbies Motto - "Jesus loves me!"
Romans 3.23 - "all have sinned."
Romans 5.8 - "While we were sinners, Jesus died for us."
Genesis 1.31 - "everything God had made was very good."
John 3.33 - "God is truthful."

The best thing is that he remembers all of them - he even recited all of them for the Cubbies leader tonight! =0) Such a smart cookie . . . and what a wonderful memory! =0) I also love that he's filling his mind with good things to remember . . . not just lines from movies (the most recent is Arthur's Christmas . . . and, of course, The Wiggles). =0)

(and yes, I took my camera just so I could capture Isaiah's happy dance) =0)

Wordless Wednesday

2010-02-03T20:30:00.000-05:00

=0)

Almost made it . . .

2010-02-02T22:35:00.006-05:00

We almost made it through January without an episode of anaphylaxis. Almost.

Isaiah had another episode of anaphylaxis on Sunday night after a weekend (that started 3 am on Friday) of mini reactions. This time, Isaiah did not throw up - completely unusal for him. He also broke out in hives (again, not too common) along with blisters. Anyway, Isaiah began having breathing difficulties and swelling, so we called 911 and administered an Epi along with a bunch of Benadryl.

I think all the meds sort of kicked in by the time the ambulance arrived, because the once lethargic child began to talk . . . slowly, and slurred, but he was talking. =0) By the time we got to the hospital, Isaiah was bouncing off the walls! =0) Epi + a ton of antihistamines = tons of energy. =0)

So, what caused the reaction? No idea. The only thing that we (the doctors and . . . us) could figure out was that Isaiah's body decided that it waited too long for a major reaction and that he had a high fever on Friday. Considering that, this episode could have been worse than it really was.

Isaiah is doing well - he only has the dark circles and a very stuffy nose from the reaction (the docs have been considering changing his Nasonex because it hasn't been working all that well for him).

Oh, yeah - the ER physician also ordered a tryptase (a test that measures while we were there (we had a prescription for one from our doctor at All Children's), something that the hospital said they would not do . . . we'll get the results by next week. =0)

Things have been crazy here for us, but it's comforting to know that God is right there with us. When we had gotten back from the last appointment at All Children's (at the Rothman Center), this Scripture popped up on my desktop: "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance" (James 1.2-3). Gotta love the Bible Verse of the Day app. =0) Smith Wigglesworth also said that "Great faith is the product of great fights. Great testimonies are the outcome of great tests. Great triumphs can only come out of great trials."

While that doesn't seem all that comforting in the midst of turmoil, there is one thing that remains stable - God is there with you. He has never left us. Whatever trial we go through, God is there with us - walking beside us or carrying us through it. It's never pleasant to go through anything painful. However, on the other side of that pain lies joy and blessings . . . which can even be found even amidst the pain if you know where to look. Isn't God wonderful?

Anyway, those are just the ramblings of a very sleepy mommy.

Isaiah also has yet another appointment in St. Pete next week . . . this time with the allergist. Sometimes, I wonder if maybe we should just live there! ;0) Really, just kidding, but it does make you think. =0)

My Dad and Zambia

2010-01-31T14:55:00.005-05:00

My dad is home from Zambia! He actually returned last weekend, but I figured I needed to have a chance to go through his photos before I posted. =0)

Yes, my dad went to Zambia even though his doctors advised against it. =0) That's my dad! =0) Besides, it's difficult to go to Zambia without having a life-changing experience. It leaves such an impression on your heart, that you can't help but want to return. I still remember the beautiful sound of Zambians (adults and children alike) singing praises to our God, I remember the smells, and the scenes . . . the nighttime services, being in the middle of nowhere (yet somewhere special just the same), walking/driving through the villages. I miss it just as much as my dad . . . who can't seem to get enough of it either. =0)

This trip, Sons of Thunder was dedicating a church that my dad (and others) helped build. I know this was just another life-changing experience for my dad. As I said, it's impossible to go to Zambia and not be changed.

Of course, my dad has tons of stories to share . . . but has been so quiet since he came home. Unusual for him, since he usually talks your ears off for hours. ;0) I could tell you of my experience in Zambia, but I think my dad's most recent experience will be more fitting. As he decides to share, I will post. Until then, I have posted a couple of videos for you to watch . . . I miss those sounds so much! To see more videos from Sons of Thunder, you can visit YouTube and search for SonsOfThunderFarm (or just click on SonsOfThunderFarm). =0)

(You'll have to mute the music player at the bottom of the screen to hear the movies)

Church Dedication, Part I

Church Dedication, Part II

Village Service

All Children's - Rothman Center

2010-01-22T22:10:00.008-05:00

Isaiah had his appointment with the neuropsychiatrist on Wednesday. I will start out saying that it was a looooooong day. Not only was the appointment at 9 am, the appointment lasted 3 hours! The long day also included lab work and a 3-hour drive home . . . I think we finally made it home by 10 pm.

The appointment went well, for the most part. Nothing was said that we hadn't already been told (rather, suggested) before. After playing with 2 therapists (a speech therapist and an occupational/physical therapist) for about 30 minutes or so, it was decided that Isaiah needs ST and OT at least 4 days a week . . . and PT to strengthen core muscles. They also said that he would benefit from a therapist-controlled social play group . . . no food involved, and only an hour at a time.

After meeting with the therapists, Isaiah was introduced to the physician (a neurologist-psychiatrist). She played and observed Isaiah for the rest of our stay (about 2 1/2 hours). She asked lots of questions (of us and Isaiah), but mostly observed. At the end of the appointment (and after consulting the therapists), it was concluded that Isaiah has very high functioning Autism (an Autism Spectrum Disorder). The doctor said that Asperger's Syndrome would have been considered, except Isaiah has a speech delay (which is not part of Asperger's Syndrome). Along with that, Isaiah was diagnosed with ADHD (combined type) and Sensory Integration Disorder, both of which go along with Autism Spectrum Disorder.

We were given more informational papers, a recommendation to CARD (Center for Autism and Related Disorders), and the doctor's orders (including lab work and a list of recommendations for therapy). It's the lab work that made our day that much longer . . . I'll explain more in a minute. =0)

Since it was a beautiful day outside, we were in beautiful St. Pete, and we were just given an overload of information, we decided to go play at a park at one of the ports in St. Pete. It was a beautiful park, and such a wonderful addition to our day. Isaiah really needed the time to unwind, especially after the long car ride to St. Pete and the long day we already had. He had so much fun, and it was cool enough outside that he didn't even flush! =0) That's a huge thing for Isaiah - that has been a daily part of our lives recently and something that happens when he plays outside. It was so cool outside that he didn't even need the cooling vest! =0)

After playing for a while, we decided to go find a place to have lunch . . . and to start our 3-hour trip home. Or so we thought. No, no ER trip. You see, we stopped for lunch and began reviewing the paperwork from the appointment. After looking through all the checked boxes for labs, we noticed that the doctor had forgotten to inform us that the labs needed to be completed at All Children's . . . which was now 45 minutes away from where we were . . . and it was already 2:30. So, back to St. Pete. =0)

We got back to the hospital, found the re-located lab (the hospital is under construction and all the outpatient facilities . . . except for the Rothman Center . . . had relocated to the new building), and registered for the lab work. By that time, it was around 4:30. Then, we waited. And waited. Yup, and waited some more. =0) At 5:00 or so, they took Isaiah back for the blood donation . . . they took 9 vials! Full vials, that is. Poor guy!!! During the whole process, the nurse missed his vein and decided to dig around a bit. Isaiah was already freaked out enough that he was going to get a "shot" (he sooooo recognized the lab decor), and began yelling "She's going to get me killed! It's not my turn, it's Bafanjoo's (my nephew) turn! Bafanjoo wants a shot!" Nine vials later, labs were completed and we returned to the car to begin our long trip home, rush-hour traffic included. =0)

Honestly, I'm not shaken by the diagnosis. There is still a large portion of Isaiah's actions that aren't covered by the diagnosis, so some things are more than likely the masto. Yes, the doctor did mention medication, but only one . . . and it will help with sleep . . . if we decide to add it (we still have to talk to the allergists). And why be shaken when Isaiah was Isaiah before the appointment? Isaiah hasn't changed at all - just how we help him understand the world around him. As Isaiah calls me his "Special Mommy," Isaiah is still my "Special Baby Boy" . . . and he always will be. He's the fulfillment of God's promise to me, and what a wonderful promise & blessing he is! I'm proud of him and I'm honored to know him - to be his "Special Mommy."

I love you, my Special Baby Boy!!!

Ice in Florida?

2010-01-11T22:31:00.010-05:00

Yup, ice . . . in Florida. =0) We had a bit of a cold spell here. It's about time, I say - it's strange to live in a place that only really has 2 seasons . . . a very long Summer and some kind of a Spring. No fall, no real winter . . . except for this year. We actually had a winter! =0)

This past weekend we had "snow". Okay, so more like rain mixed with sleet . . . with a few flurries. =0) Not the winters we were used to in Maryland, but hey, it works. =0)

Isaiah was in heaven! He heard the word snow on the weather channel and went nuts! "SNOW! I build a snowman an frow snowballs!" So, just to let you know what we got to do this past weekend . . .

Poor icy tree . . . odd how it turned white . . . the others seemed fine

Icy lawns . . . don't let my dad know you saw his patchy-brown lawn . . . he takes pride in his usually green lawn. =0)

See the sleet bouncing off my dad's truck?

Okay, now on with the cute pics. =0)

Just look at that face . . . not sure of what to think of the invisible snow =0)

Pleased that the sky was making the "snow" (it was sleet with a tad bit of rain)

He caught some on his glove - "Wook, Mommy, a snowfwake!" =0)

"Awesome!" =0)

So happy =0)

Snow dance, anyone?

Still dancin'

Catching the ever illusive snowflakes =0)

My little "snow angel" =0)

Fascinated by the sleet tapping the umbrella

"I'm singin' in the . . . uh, sleet!" =0)

Of course he had to use his umbrella . . . "ev-wee day is an umb-weh-wah day!" =0)

Happy New Year!!!

2009-12-31T21:35:00.006-05:00

I was thinking about writing a reflection, just to talk about all the things that have happened over the past year. A lot has happened, but I think I've written enough about all those changes on here already. =0) Instead of posting about all the changes in our lives here, I figured I would just post photos. I excluded hospital photos and photos of reactions - it's a happy memory book. I only mention them here because we are so thankful that God has carried us through all of them. Without His hand in our lives, we wouldn't be where we are today.

With that said, may your new year be full of God's blessings, joy, peace, and may He bless you and your family with good health! (Oh, yeah . . . no need to turn off the music at the bottom . . . it will work with the slide show) =0)

Make a Smilebox scrapbook

. . . . and check out Masto Mama's blog designs at mastomamamakeovers.blogspot.com. She's having a New Year's contest and the winner will receive a free blog makeover! =0)

Merry Christmas! =0)

2009-12-28T15:23:00.009-05:00

To watch the videos, make sure you pause the music player at the bottom of the page . . . oh, yeah, there's another video at the bottom of the page as well. =0)

I know I forgot to write an update . . . and I meant to write updates sooner . . . =0) Well, here's an update. =0)

Things have been going well - still no ER visit for either Isaiah or my dad!! I'll start with the labs that we have gotten back on Isaiah . . . so far, so good. According to the labs from St. Pete (at least the ones that we won't have to re-do), Isaiah does not have hereditary angioedema!! That's a plus, but it still doesn't explain everything . . . we do have to have 2 of the 4 labs redone because they are difficult to take. =0( Not so good news for Isaiah, who screamed, "she's gonna get me killed!" the last time we were at the lab. =0)

As far as the ones from Isaiah's pediatrician, there was no known reason for the petechiae. If it happens again, I'm supposed to take him in sooner so that we can figure out what's going on. As far as the petechiae . . . it's gone. =0) At least, mostly anyway. e has a few random dots of it here and there, but the majority of it is gone! Thank you guys for praying!!!

Now on to allergic reactions . . . yup, there was a very close call just a couple of weeks ago. We went to Maryland to see family - some of which Isaiah has never seen. To avoid a problem on the airplane or in the airport, I gave Isaiah extra meds. Well, it worked for the flight and the airport, but as soon as we left the airport, Isaiah started getting blisters on his lips, swelling in his face, and hives in his mouth and throat. Isaiah was a tad nauseous, but he didn't throw up . . . and his lungs didn't seem affected, so no Epi which means no wild trip to Baltimore-Washington Medical Center (which was near the airport). I did give Isaiah extra meds (which included 3 doses of Benadryl at one time). Apart from being extremely drowsy the rest of the evening, Isaiah seemed fine.

I would love to say the reaction ended there . . . but it didn't. Isaiah was swollen for at least a week and a half afterwards, with a stuffy nose & cough (from the nose issues), and red dots . . . oh, and then there were the red spots on his lips from the blisters. He's doing much better now apart from some babbling and other speech issues . . . and flushing and little bits of swelling. =0} I know, sounds like a lot, but I'll take this over anaphylaxis any day . . . and some of this is even a "normal" day-to-day thing for us.

My dad was supposed to go to Maryland with us, but he wasn't feeling well - not sleeping and in pain. =0( He's still not feeling the greatest, and on top of that, we have colds!

Anyway, on to Christmas . . .

A few days before Christmas, we started our regular Christmas baking . . . and Isaiah got an apron in the mail (our grocery store sent it to him) just in time! =0) He looked so cute in that apron! He had a blast, too!

We had a wonderful Christmas Eve service, where Isaiah actually stayed to participate in the candle lighting - he even sang "Silent Night"!!! The next morning was just as wonderful. Isaiah woke up and was so excited to see the gifts under the tree. =0) He was so good, though - he didn't touch any of them (except for the unwrapped Tolee doll) until we were all in the living room! Later, we decorated the cakes and put candles on one of them to sing Happy Birthday to Jesus and my mom (her birthday was on the 13th . . . HAPPY BIRTHDAY to my wonderful and awesome Mom!!!! . . . I wanted to write a post, but we were in MD and didn't have Internet access).

Instead of posting individual pictures in the post, I made a little slide show for you to enjoy . . . and I'm posting a video from Christmas day. =0)

Make a Smilebox slideshow

Isaiah was so excited to find candy that was safe for him in his stocking =0)

Thomas was on his list, again, this year - "I'm so happy!" =0)

Yeah, yeah, I know . . .

2009-12-08T20:59:00.009-05:00

. . . it has been a while since I have blogged. =0) Things have been busy around here, and I have been having so much fun with my little man that I sort of forgot to write! =0)

Lots of things have been going on here. So, I'll start with Thanksgiving - we had a wonderful day. Isaiah had a wonderful meal - pumpkin pie, apple pie (there's a story in itself!), turkey, mashed potatoes, sweet potatoes, corn, stuffing . . . all Isaiah-safe, too! =0) We even put up the Christmas tree (one of my favorite parts of the Thanksgiving holiday). It was very relaxing and a completely needed break. =0) We didn't have our "hup-bol" (football) fest like we did last year . . . but that's because my dad, brother, and one of my nephews was on the roof putting up Christmas lights. =0) My other nephew and my son??? Well, my younger nephew was trying to keep Isaiah occupied and off the ladder! =0) Oh yeah, and another Thanksgiving tradition is visiting Santa the following day. =0)

As far as Isaiah's health, he's doing good right now, for the most part. He hasn't had an ER visit, but this is usually his "quiet" time. He has had the usual "in-between" reactions, though (swelling, flushing, speech issues, bone pain, etc.). The normal for us just keeps on changing around here. =0) As far as the lab work Isaiah had done about 2 1/2 - 3 weeks ago, they still haven't come back yet. My guess is that it's just the types of tests they had to do - maybe they just take longer to come back. Who knows? I'm going to call tomorrow, because I'm very curious as to what they've found . . . or not found.

Unfortunately, Isaiah had more labs done today . . . he has petechiae on his chest and back. The stuff on his chest looks like it's in some kind of a pattern, though there were some extra spots that messed up that pattern this morning. In case you were wondering, petechiae are small red or purple spots on the skin caused by broken capillaries (small, surface blood vessels in your skin). He has several, but it could be much worse . . . it's still something I didn't want to just ignore. I'm sure it's nothing serious, but I would like to know why it keeps showing up. He was very brave about the whole thing, especially since he said that the nurse was going to "get him killed" because she was going to take "all my blood!" =0) He has such an imagination (I have no idea where he gets this stuff)! =0)

In addition to this, Isaiah has been moody over the past week . . . very moody. =0( Poor guy. He seems a bit better today, though. Maybe because he had a little extra Mommy-time today. =0) His mood swings have been tough to handle. I do miss those random giggles and laughs. Don't get me wrong, they're still there . . . it's just that they're not as plentiful. =0}

An exciting thing is that we have an appointment with a neurologist in St. Petersburg next month! While that may not seem like a huge deal, it's not easy getting into their clinic. Maybe we'll have some answers as to what may be causing Isaiah's speech and other developmental delays. I'll let you know how that goes. As for now, I'm still working on finding a new pediatrician and trying to get the label of Autism off his chart (yeah, his pediatrician has already labeled him without a diagnosis . . . yet another story).

On top of all of this, my dad has had a few issues recently. Last week, while we were eating dinner, my dad got this glassy-eyed look and began saying, "they're down by the berry patch, right along the side," accompanied by hand motions. My mom and I just looked at each other because it was so random - we weren't talking about a berry patch or anyone in them for that matter. At first I thought he was joking, so I laughed but I quickly realized he wasn't kidding around. My mom asked him what he was talking about and he responded with, "they're right down there at the berry patch." He, then, slowly closed his eyes and stopped talking. My mom yelled his name, and my dad looked at her like she was crazy. =0} He had no idea what he had said and denied it at first, then explained that he hadn't slept the night before and that he was tired. Later, he told my mom that he was scared - he thinks the leukemia is causing all of his symptoms (pain, etc.) and that he felt so much better when he was on the blood thinner (when he was in the hospital). I have to say, it's scary to see him go through this - especially when this isn't the only strange thing my dad has done.

Before this incident (and before he was in the hospital the last time), my dad was quiet and calm - nothing seemed to bother him, and he wasn't . . . . grumpy. =0) Seriously, nothing seemed to bother him. He wasn't cheerful, not depressed, just complacent. He didn't argue or fuss about anything. He was like that for about 2 weeks. Then came the hospital visit. Since then, he has been back to his "usual" self. =0)

I don't want to make this such a gloomy post, I just wanted to let you guys who are praying for us to know what's going on with us. =0) We have so much to be thankful for - I intended to write a post on that for Thanksgiving, but I didn't get the chance. I will write the post once I get all of my thoughts put onto cyber-paper. =0) I have some time off coming up next week, so I guess that means I'll be posting a bit more often. =0) I'm sure you're overwhelmed with joy, as your inboxes (for those of you who receive my blog by mail) will be flooded with blog posts from me! Hahahaha. ;0) Yeah, I know, I'll probably just forget again. =0)

Anyway, I do have something to post before Christmas, so you'll have at least one more post from me this month! =0) (I also have one last picture for you . . . who knew Darth Vader and Christmas would ever go together????) =0)

Dad's Home! =0)

2009-11-16T21:27:00.003-05:00

God is good!!!! The tests came back fine - no blood clot and no heart attack. My dad was able to come home this evening and is pretty much back to himself. =0) He was even giving the nurses a fit - he wouldn't stop asking if he could come home! =0)

Thank you guys for praying for him!

Please Pray for My Dad

2009-11-15T23:06:00.003-05:00

I have been meaning to write an update on my dad, but things here got a little crazy . . . not unusual, right? =0)

Anyway, on a serious note, my dad hasn't been feeling well for a bit, and tonight he is in the hospital. While he may not have had the same issue as he has this evening, he really hasn't been feeling well lately - he has been sleeping a lot, not so grumpy (almost indifferent - very unusual for him) =0), cold (including blue), in pain, and not sleeping well at night (naps are even interrupted by his jumping).

Tonight, my dad was admitted so that the doctor could do a few tests tomorrow to figure out everything that's going on. His blood tests seemed okay, but the doctor was concerned about his lung x-rays, and is also concerned that my dad may have a blood clot in his lung. He was given nitroglycerin and is on a blood thinner tonight; tomorrow they will do a nuclear test to see if my dad does in fact have a blood clot.

Please keep him in your prayers.

Another Appointment . . .

2009-11-06T19:40:00.008-05:00

. . . more information. =0) Our appointment was canceled a few times (twice to be exact), but we finally got in, thanks to someone else for canceling their appointment! =0)

Over all, the appointment went well. The new doctor, Dr. S., was wonderful! Not that we have had problems with doctors at All Children's - we haven't, they have all been wonderful and supportive . . . and would even call the local hospital to lecture ER docs. =0) Nice to know someone else is out there to give those docs an earful, right? =0) Anyway, Dr. S. was very thorough and has even began more testing for diseases that might just be making things worse for Isaiah (considering the anaphylaxis episodes are becoming more frequent as are some of the symptoms like flushing and swelling . . . which I will talk more about in a little bit). One thing Isaiah will be tested for is a form of hereditary angioedema (basically random swelling that can also mimic anaphylaxis in that his airway and digestive tract can be affected). Of course, edema (or angioedema) can also be part of anaphylaxis and other allergic reactions . . . so, it's really nothing new, but it would be interesting to know about. The appointment, which was only scheduled for an hour, lasted 3 1/2 hours! Talk about thorough! =0) It was really nice to know that someone is still interested in figuring out everything that is going on with Isaiah . . . at least so much so that they aren't willing to say, "I don't know." No one was giving up on Isaiah, but they were running out of ideas . . . then came fresh meat! =0)

Yes, Isaiah still has systemic masto . . . and severe allergies . . . but they are just a little more aggressive than the two of them should really be. If you take into consideration that Isaiah's IgE counts are still not falling (they should be by now), there's just something else going on. So, what kinds of things are we seeing? Swelling of his face, lips, tongue, eyes, hands, etc (at least 4 times a week, sometimes lasting a few minutes to a day or so - it comes and goes). Isaiah also has problems with flushing (almost daily) that is generally accompanied by a rash . . . after which Isaiah usually ends up in pain from headaches and from what we think is bone pain (and abdominal cramping), but we have found that as long as we treat him with Hydroxyzine (Atarax) soon after flushing begins, Isaiah doesn't go through the rest of the process. Before we knew what to do, we would wait until the rash, which would more than likely result in the pain episodes. Now, the pain episodes come and go, but aren't necessarily associated with flushing . . . not always.

Now, all of this sounds just horrible, and it is. It's just that we deal with this so often that it's becoming "normal" . . . that's the really scary part. It shouldn't be this normal. The swelling was the one thing that the doctor just thought was a little too obnoxious to blame masto for it all. Keep in mind, masto is still there as well as the allergies . . . there's just something more.

Another good outcome is that there will be no more steroid treatments for Isaiah unless they are used to treat anaphylaxis episodes (which usually means short-term prednisone doses that are quickly tapered). YAY! =0) It was nice to see Isaiah eating well and gaining weight, but I didn't like all of the negative side effects of the steroids. Since Isaiah doesn't have asthma, the doctor wants us to try stopping the Advair!!!! YAY, another med gone! =0) It is very possible that the masto is affecting his lungs, but it might not be . . . his "asthma" attacks were likely the precursor to/part of anaphylaxis. Of course, the other meds stand as are, but I'll take the minus two! =0) Yeah, that still leaves us at a nice 13 meds a day, but that's still better than 15, right?

Another thing that was discussed was school - should Isaiah attend school even for a partial day? The doctor just about lost it when the question was raised. Her response, "absolutely not!" =0) Okay, so that takes care of the gut-twisting feeling I felt at the thought of Isaiah in a school with a lot of other little kiddos . . . with food, kiddos with pet hair on their clothing, remnants of food on their clothing . . . lots and lots of exposures to all sorts of things (chemicals, molds, etc.) that could send Isaiah to the ER, again. Then there's the issue of part-time nurses, teachers not being allowed to carry or administer student's epi pens (in our district, at least) . . . I didn't even have to say a word about my gut feeling on the subject. The look on her face at our inquiry was a look of complete horror, an almost "why in the world would you do such a thing"-type look. =0) That look said it all. Homebound it is with a few social extras on the side. =0)

Okay, let's see . . . new doctor, masto/allergy/something else combination, symptoms, meds, school . . . am I forgetting something??? Yup, Xolair. In asking about Xolair, the Dr. S. said that Isaiah's IgE is way too high for the insurance company to approve its use . . . apart from his age, his IgE count, alone, was way too high - his body wouldn't handle the shot very well. Apart from that, Isaiah is so sensitive that it might just cause a reaction (as I have mentioned before - yes, it really is a major concern), and he does not have asthma. Apparently, Xolair is only approved right now for use in patients with uncontrolled asthma issues and is not approved for prevention of anaphylaxis because it hasn't proven to be useful in preventing it . . . wow, that might have been good to know when we were considering this treatment. So, our last resort drug really isn't even a last resort any more . . . it's not an option. Good thing, but stinks to know that there isn't anything out there right now that will help us too much apart from what we're already doing.

Which brings me to the downside of the appointment: there is no cure nor preventative treatment for everything that Isaiah is currently diagnosed with (and with the possible extras being thrown into the mix). Of course, there is the common sense stuff - stay away from the known allergens and triggers. Apart from that, the histamine treatments (H1 and H2 antihistamines that Isaiah takes daily - part of the now 13 meds regimen) are our only hope for managing symptoms. Oh yeah, and we have to make sure Isaiah doesn't consume corn too often - his IgE is saying that corn may be a bad thing for him if he eats it too much . . . and his IgE to wheat and soy have actually gone up . . . as did his IgE to cat and dog . . . and mold.

There is One who can heal Isaiah completely . . . when He chooses to heal Isaiah. While I may not understand why God hasn't chosen to go ahead and heal Isaiah, I'm still at the point where I'm not sure I want to know the answer to that question. There are so many kiddos that are suffering from various illnesses, but I know God has a plan and knows the right time for their healing - in His time, not mine. His timing is perfect, so that means when He chooses to heal them, they will be. The situation, the circumstances, those surrounding them - everything will be in perfect timing, with a perfect reason. Of course, I'd still like to know when that is. ;0) However, God understands that more than I do.

Please, don't get me wrong - I don't take all of this without crying (no, I don't laugh through it all). =0) I don't always feel at peace about all of this. I just don't ask God why. I feel if He wants me to know, then He'll tell me. Until then, I'll just keep following Him - He knows where He's headed, after all. =0) My point is, though, I do cry about all of this. In fact, I spent a little time in my car (going to work) crying just thinking through everything.

There isn't a cure for masto. There isn't a cure for anaphylaxis. There's no cure for allergies, including severe allergies. There is no cure for angioedema nor the other things Dr. S. is testing for. There isn't a fail-proof medication to treat these conditions, and the majority of the medications also include side effects with long-term usage (sometimes based on the dosage Isaiah is on). The things Isaiah goes through - anaphylaxis - can be fatal if not treated . . . sometimes they're still fatal even when they are treated properly. These can be serious things if taken too lightly, yet you still have to live as normal as possible - not always an easy task when you know you have limitations . . . living with modifications. We still have to avoid the bakery section at the grocery store, picnics with bags of chips or popcorn that have a powdered substance - they usually contain powdered whey or milk. Isaiah still can't play outside when it's too hot . . . or too cold.

No school means no school parties, no school smells (I have this thing with the smell of the first and last day of school - it just smells good), no "school" experiences for a while . . . at least until things are figured out and until they calm down for Isaiah. Isaiah's school will consist of our house and computer. No school field trips, no bus rides (he really wants to ride a "yellow school bus"), no surprise art projects. It's not all that bad, though. Isaiah won't have to worry about missing school because he's not feeling well or because he didn't sleep the night before, nor will he have to worry about going to a school that's about an hour away (one school for medically fragile children was sort-of an option), no calls from frantic teachers/nurses . . . no worries about Isaiah missing out on a field trip to the zoo or a farm because he cannot tolerate being around the animals anymore. Besides, I like the idea of being able to avoid some of the things they teach our children these days so that I can teach him about what God says . . . not the US Government. I'm not opposed to public schooling, but I do have issues with the system. =0)

Like I said, it still bothers me. I'm not always feeling all that positive, though I try to be anyway. It's almost like the game Pollyanna used to play - for every bad thing, think of a good thing to make the bad seem better. I am thankful that things aren't as bad as they could be. I am thankful that I can have a more active part in my child's education, at least in the early stages. =0) I am thankful that Isaiah can still eat what we've been feeding him. I am extremely thankful that I can still see his sparkling eyes, gorgeous smile (complete with dimples), hear his contagious and melodious giggle, hear his sweet voice, get the biggest and best hugs I have ever gotten, his quirky sense of humor, his vivid and wild imagination . . . and yes, I even love those sloppy kisses and one-of-a-kind hairdos he gives me! =0) Oh, and how could I forget those facial expressions and mannerisms? =0) I'm thankful that Isaiah is my son and teacher (you learn so much from these little guys!). I could go on and on . . .

Anyway, I know this was a long post, but I just wanted to share a bit about what has been going on with him and his appointment. Did I mention we were almost hit by a police officer who pulled out in front of me??? I guess you could say he almost hit us . . . and, yes, this was on our way back from St. Pete . . . Isaiah slept through the whole experience. I slammed on my breaks so hard, that my car was knocked out of drive into neutral - good thing I was paying attention, huh? =0) I wasn't the only one, either - two other lanes of traffic almost had a run in with him . . . he went across 3 lanes of traffic! Anyway, that's a story for another day. Thank You, Jesus, for your protection! =0)

I do have more to post, but that will have to wait for a bit . . . this post was long enough! ;0) Thanks for your prayers! By the way, did you notice that the last 3 pictures were in succession - Isaiah was blowing a kiss! =0)

Waking Up from My Slumber . . . ;0)

2009-10-19T19:43:00.009-04:00

Has it really been 3 weeks since my last post (actually, I think it's just a few days shy of being 1 whole month!)??? Sorry, it has been so long since my last post - there has been quite a bit going on here. Thankfully, nothing bad . . . just busy. =0)

Isaiah's labs (the IgE tests) have come back, but I will save the news for a while - at least until we hear more from his next appointment at All Children's. I think I have more questions than I did last year, so I want to make sure I have all the facts straight before I post anything about the labs. One of Isaiah's allergists really wants Xolair put back on the table (Xolair is the IgE-binding med that the docs at All Children's want to use as a very last resort). I'm really hesitant to say yes to this, only because I'm not so sure it would be completely safe for Isaiah - using this drug with Isaiah can raise so many concerns (anaphylaxis from the shot, the side effects, it may not even work, and it might make things worse). The only thing I will say is that the doctor said to be careful with corn. Grrrr. Like I said, I'll post more after his appointment with All Children's . . . which is in about 2 weeks. =0)

Hey, at least you'll know I'll definitely have a post around then, right? =0)

Apart from that, Isaiah is doing well . . . for the most part. =0} Isaiah has had problems with rashes and eczema (especially that obnoxious rash around his mouth). He also hasn't been eating well, though he devoured 3 baked potatoes for dinner this evening. =0) He is getting rather skinny again, which bothers me a bit - you can see his ribs again. =0( I guess that will be something we'll address at the appointment as well.

On a positive note, Isaiah is talking more and more . . . using complete sentences and saying things that are . . . well, adult-ish. =0) For example, at dinner, he said, "Mmm-mmm, this meal is just tasty!" =0) He also told me he was going to "Hamburger Helper," (no idea, it's probably something along the lines of "Scrubbing Bubbles) and that I had to stay here to take care of Nai-Nai and Ye-Ye. =0) So, being facetious, I told him that I wanted to go, too. To which he replied with the most sincere face, "Well, you have to ask." So, I did: "May I go with you, Isaiah?" Again, with the most sincere face, he replied, "You have to say please to be polite." !?! =0) Hmmm, does he sound like someone? It's nice to know that my good manners lessons aren't falling on deaf ears! =0) Hahaha

He has also become quite obsessed with Star Wars . . . yet he has never seen it. Seriously, I would never let him watch it - he's way too young. However, he somehow knows their names . . . all of them . . . and that they carry "light savers" and that there's a "death star." Sheesh! There goes my baby . . . hello, big boy. =0) Any guesses as to what he wants to be for Halloween? No, not Yoda, nor "Ooobie One Kenooobie." Nope, not even Luke Skywalker. If you were thinking Darth Vader, you've guessed correctly! Scary thought - he didn't even go for the good guys . . . though, he will try to convince you that Darth Vader is a good guy. =0) He's a little confused, but understandably so . . . he's never seen Star Wars. =0)

So, now we have Star Wars PJ's, a Star Wars t-shirt (I refuse to buy more than that), =0) and a Star Wars game . . . and a few Star Wars figurines. How did all this start???? One word, 2 syllables . . . neph-ews. =0) Yup, they started it all. =0) Oh, well. I guess it was only a matter of time, anyway, right? =0) Just in case you thought Thomas was out of the picture, guess again. Nope, he fits right in there somewhere amongst Star Wars and the Little Einsteins . . . and Ni Hao, Kai-Lan. =0)

Did I tell you about him arguing with Nick, Jr.? Apparently, Noggin was taken over by Nickelodeon and is now called Nick, Jr. Well, I can think of one unhappy little guy because of that small change - Isaiah was distraught because his Noggin was gone! =0) No worries, because all is well again - Moose A. Moose and Zee are still part of the commercials in between shows . . . but Isaiah still wants his Noggin logos. =0)

That's all for my ramblings . . . for now. =0) I will leave you with a picture of Isaiah dressed in his idea of what Darth Vader looks like . . . thankfully, he never used that potty. =0) Hopefully, I will find a little more time to post. Thanks for your continued prayers!!! For now, I'm off to play "tosies" with Isaiah. =0)

. . . and, yes, his cape is a Wiggles blanket. =0)

Happy Birthday, Dad! =0)

2009-09-25T21:31:00.004-04:00

To a man I greatly admire

for his honesty, integrity, and wisdom.

. . . a wonderful role model

. . . an awesome Dad & Ye-Ye (Grandpa)

Happy Birthday, Dad!

Friday Fun =0)

2009-09-18T22:44:00.005-04:00

While I thought about doing a Flashback Friday post, I thought this one would be more fun . . . because I just took these pictures and I have been itching to write a post ever since I took them. =0)

Anyway, at one point today, it was actually cool enough for Isaiah to be outside for a little while . . . as the weather usually does in Florida, it quickly warmed up and Isaiah had to come back inside to stay cool. =0) So, what did Isaiah do this morning??? He helped his Ye-Ye. =0) He loves following my dad around, helping him do whatever Ye-Ye's do. =0)

Today, Isaiah had a lesson in carpentry . . . of sorts. =0) Anyone who knows my dad knows that he loves to salvage what other people throw away - he sees a use for everything. Now, of course, he's not into garbage, garbage, but the screws, nails, wood scraps, metal scraps . . . stuff he sees that can be used again, but still the stuff most of us would overlook. Our across-the-street neighbor has been working on some kind of building in his back yard, and happened to be throwing out some lumber that just wasn't working for him. My dad, in true dad fashion, seized the opportunity to collect the unwanted scraps. The lumber was tightly stuck together with a large screw that had broken off and an insane amount of staples . . . that didn't stop my dad a bit. He quickly began working with the stuff to pull it apart and salvage as much of the supplies as possible. =0)

Well, Isaiah decided he needed to help, after all, he's a "super helper." =0) He ran outside to see what he could do, then returned to grab his "whammer-hammer" and his "rusty saw," along with a few other helpful tools (a screw driver, a pair of pliers, a wrench, and another saw). Isaiah didn't waste any time, hammering away as soon as he got back outside. It was adorable! Just watching my dad and son working together was priceless . . . of course my dad has a few bruises on his hands from Isaiah's plastic "whammer hammer" . . . and the poor "whammer hammer" is cracked beyond repair . . . but he oodles of fun! =0)

So, what was I so eager to share with you? These . . .

My Boy and his "rusty saw" =0)

"Gotta hit that staple juuuuuust right" =0) (when he's concentrating, he sticks his tongue out)

"I'll help you pull out those staples, Ye-Ye!" =0)

I can't forget these, either . . .

"Male Bonding" ;0)

Working side-by-side

Wow, it has been a while. =0)

2009-09-17T18:13:00.012-04:00

Sorry about that - no worries, though. =0) Things have been going well around here, I've just been busy.

So, what has been going on??? Well, a few weeks ago (yeah, I know, I should have posted sooner), I finally finished my master's degree - an M. Ed. in TESOL (Teaching English as a Second Language). I was so excited to go back to school, and I am equally as excited to be finished! ;0) If my mom has her wish, I will be a life-long student somewhere. ;0) I was also asked to be part of Kappa Delta Pi, an international honors society. God is awesome, isn't He?

Last week, we also had a few days where Isaiah could actually go out and play . . . really play. He could stay out for longer than 5 minutes and really enjoy himself. Of course, he is still recovering from the cold I passed on to him 2 weeks ago, but he still enjoyed the time outside. Poor guy - I think he was starting to get a bit of cabin fever because he also hasn't been able to go to church either (because he has been sick and because of the whole 5 months of steroids thing . . . with the flu season and swine flu issues going around, we've had to be extra careful). Hopefully, soon, Isaiah can return to church to be with his friends. I feel so bad for him, yet he really can't get sick either. It's bad enough that he caught my cold and his body is still fighting it off. Grrrrrr, steroids. =0) I think they may have even stunted his growth a little, but he has been in the 98th/99th percentile for so long, that I don't think that's too bad of a thing. =0)

Apart from that, Isaiah is doing well - no huge reactions since the last one almost 3 weeks ago (that was the 6th anaphylaxis episode this year). He has gained weight (yay!), and his appetite still seems rather ravenous - though it waned a bit because of the cold. He does have that annoying rash around his mouth (really, all over his face), again, along with eczema flair ups on his legs and arms . . . with a little bit of rash on his back. He's not sleeping well because he is itching at night, but you wouldn't be able to tell based on his energy level during the day! =0) His feet, thankfully, haven't gotten nearly as bad as they were a couple of years ago - the rough patches still remain, but he hasn't had any blisters on the bottoms of his feet. Flushing . . . well, that still comes and goes on a daily basis - I think that's just something we'll have to deal with regularly. As long as the flushing doesn't turn into swelling, rashes, and bone pain, it doesn't seem to be a horrible thing to deal with.

My dad had one appointment for his blood test results. His results weren't too bad, but the doctor still wants him to see his hematologist/oncologist - which will be in the next couple of weeks. He has been irritable, tired, and in pain . . . but he at least has been sleeping well (I haven't heard him up late at night anyway). He has also had times where he just feels awful, but that usually comes and goes. Thank you for your continued prayers for him. I know that he usually tries to hide all of this from people, and he can do a good job of that, but it's when you catch him when he's unaware that you find he really hasn't been feeling well . . . if that even makes sense. Cancer stinks!

I think I have caught you up on just about everything . . . I think. =0)

Midnight Snacks & a Prayer Request

2009-09-04T02:13:00.005-04:00

No, this is not about me and my midnight snacks. Sheesh! ;0) I am writing this about Isaiah and his midnight snacking lately. I'm sure you're thinking, "why would Isaiah, a 4-year old, have a midnight snack?" First of all, this is my child you're talking about - he loves to snack. =0) Secondly, the steroids are now taking over. =0) A child who loves to snack has just formed a stomach with a bottomless pit.

This isn't altogether a bad thing - I mean, he wasn't eating well before his last episode. And what he's wanting for a "snack" isn't all that bad, either. It's just the time and his snack of choice that seems to be more of the issue. Take, for instance, last night. He wanted chicken. Yup, chicken. Not the frozen pieces that are easy to stick in an oven and are done in half an hour or so. Not even the Isaiah-safe chicken nuggets or special chicken hot dogs, either. Nope, he wants the real deal. The big, mouth watering, delightful-smelling, roasted chicken - two legs, two wings, the golden brown skin . . . you get the picture. =0)

Well, on to tonight. For dinner, Isaiah wanted this chicken, again. Well, since we just had chicken the previous night, we didn't have the chicken thawed for dinner tonight - I might add that we had leftovers the previous night, with the real deal cooked the night before. =0) So, I convinced him that he really wanted pasta with some extras (veggies and such). Well, he picked "noodles with da gar-wic, and da odder stuff" (rice pasta with garlic, oil, and spices). =0) So, I made his pasta . . . and he ate all of it - I had even made extra for the anticipated midnight snack, and he ate all of it. =0) Thinking he wouldn't want the noodles, again, I was hoping he would just want an apple or one of those special hot dogs.

I couldn't have been more wrong. =0)

Not only did he want the noodles, he wanted the long noodles (spaghetti noodles) tossed with the sauteed minced garlic and spices . . . at midnight. I couldn't convince him to choose a different snack, either. I offered, and gave, him chocolate ice cream (that I made from rice milk) and a fruit juice Popsicle. To top it off, he also had some cinnamon applesauce. Apparently, that just didn't do it for him. He wanted those noodles. So, at 12:30, I had to make the pasta.

And this is him enjoying the pasta . . . served with our best white grape-cherry juice, of course. =0)

And, yes, he is now resting peacefully, all snuggled up in bed while I type this. =0)

-----------------------------------------------------------------

And on a sadder note, my Aunt Sis (my dad's sister) went to be with Jesus yesterday. She was a wonderful person with a huge heart - someone who would invite you into her home and cook a huge meal with whatever she had in her cabinets. She was a wonderful cook. It's hard to think that she's no longer here on earth, but now in eternity with Jesus. It almost seams surreal - we were going to visit Aunt Sis and Uncle Ivan on our last vacation that was cut short (they have never met Isaiah). I know Isaiah would have loved her, just as she would have loved to meet Isaiah in person (she spoke to him on the phone once). I know that she will be greatly missed. Please keep Uncle Ivan (her husband), her sons (Danny and Chuck), their grandchildren, and the rest of the family in your prayers.

My dad has been mostly silent since yesterday - you can tell he's really bothered by this. He's also not feeling the greatest either and has an appointment as soon as he gets back with his oncologist - some tests came back with some not so great results. I will keep you posted on the labs and the appointments. I know you guys will pray for him as well (as you already have been).

Update from Our Latest ER Visit

2009-08-30T22:10:00.008-04:00

Just to let you know how Isaiah is doing today, he is feeling much better - he even ate!

Yesterday, Isaiah spent the majority of the day resting - he wasn't really into playing very much. Every once in a while he would let his personality shine through, but he would tire easily. He ended up falling asleep around 9, only to wake up again at 10 . . . not wanting to go back to bed until 3.

As far as eating, he was still throwing up a bit (reactions can take a bit to calm down, and he hadn't eaten since Friday night around 7 or so). His tummy just wasn't settled, even with all the extra meds.

Today, however, he hasn't thrown up at all and decided that he wanted chicken and "trench tries". =0) While he still didn't eat a ton (as I would have thought given the dose of steroid he is on right now), he did eat. And he has been munching ever since. =0) I imagine that by tomorrow, he'll have the refrigerator and the cabinets cleaned out. ;0)

He has also been drinking a bit more (another thing he wasn't doing much of). He drank a little before going to bed (by a little, I mean 2 cups of Sprite and 1 cup of Coke . . . he did ask for them, after all). =0) Today, he still won't touch juice, but he has finished the bottle of Coke and is almost there with the Sprite (I know, but he really doesn't get this stuff all that often). I also offered his "chocolate milk" (chocolate rice milk), but he really wasn't interested in that either . . . and, yes, the stuff actually does taste good. =0)

Tonight, he's almost back to his normal self - even taking time to play loudly and dance a bit. =0) Today, he plays for a bit, then rests - not 100% normal, but getting there. Recovering from anaphylaxis can be tiring, so I'm not too worried. Right now, he's reenacting the launch from Friday evening with his little space shuttle. =0) Maybe it's just loud because I have a cold and my ears are overly sensitive, but he is unusually loud tonight! ;0) It's good to see he's feeling better. (hahahahaha - he just yelled out, "Mommy! I'm going to space exploring!" =0) Goober.)

Well, I have to give the last meds of the day and get my little "super driver, space explorer" to bed. =0) (hahahaha, no he says he needs "Mommy's" help, who just so happens to have a red, painted-on goatee, because there is a "meee-ter shower!" Sounds urgent . . . by the way, I don't have a red painted-on goatee, just the little figurine that he's pretending is "Mommy" - I love his imagination! ) =0)

Before I go, though, we have been keeping Isaiah in because of the flu - he has been on prednisone (a steroid) for about 4 months now, and is now on a higher dosage of it for the next 8 days. Since taking steroids lowers your body's ability to fight off infections, Isaiah isn't really allowed to be out and about - there are cases of the swine flu around here, too. He isn't able to get the flu shots because he is allergic to eggs. We, however, can get the flu shot and will as soon as it comes out. I do work with kids, so I am exposed to germs. Please pray Isaiah won't catch any of these germs - we really don't need that. =0) Thankfully, there have only been a few times where Isaiah has had a reaction because of an illness (fevers can irritate those overactive mast cells).

Okay, so, yeah . . . it's time to get this little guy in bed . . . he's collecting ants and giving them to us (okay, so there were only 2) . . . the big ants that somehow have sneaked in under the front door . . . silly ants. =0) And now he tells me he needs a red super hero cape with a space shuttle on it because he's a super helper, too. =0) I just love the way he thinks . . . and how he's ever so specific about his requests. =0) Any ideas on how to get a child on steroids to go to sleep??? ;0)

Midnight Launches & 3 am ER Trips

2009-08-29T23:49:00.010-04:00

Well, Discovery finally launched last night at 11:59 pm - might as well say midnight, right? It was a perfect view, too. The launch pad was visible, and the launch went smoothly - with lightning more than 30 nautical miles away. It was beautiful, and Isaiah ecstatic, saying that he could drive the space shuttle because he's a "super driver." =0)

After the launch, we came home and went straight to bed - after all, it was after midnight. I would like to say that was the end of the evening . . . but Isaiah's body had other plans.

At 3 am, Isaiah started squirming around. When I touched him, he was cold - very cold. I checked the blankets to make sure he hadn't kicked them off, but they were right where they were supposed to be. So, I turned on the light, and took one look at Isaiah and knew what was happening. Isaiah is having another episode of anaphylaxis. He made it 7 weeks without an episode; he is still on steroids. This shouldn't be happening, but here we are, again. His lips were blue and swollen, along with his hands and feet, and he was beyond pale - even his eyes were dark and puffy. He wouldn't answer me, but stood up in the middle of the bed and said "doctor" and "shot." Thankfully, I had a green tub from the previous hospital trip under the bed, which I grabbed and held it under Isaiah's head. He vomited and I grabbed the Epi and gave it, called 911 and waited for the ambulance to show up. On the way to the hospital, Isaiah was given a nebulizer treatment because he still wasn't acting quite right. (he was itching in the pic) =0}

At the hospital, they gave him Zofran to calm the nausea and vomiting all the while watching his heart rate bounce around - from 145 to 60 . . . the Epi was working to keep his heart rate up, but his body wanted it to slow down. Isaiah was lethargic, understandably. So, the doctor decided to give him a shot of Benadryl and Decadron (a strong steroid). The combination worked, and 6 hours later, he was allowed to come back home.

I would like to say that he is completely back to himself, but he isn't. He is much better, and has even had a few chattery, bubbly moments today . . . especially concerning Star Wars (the child has never seen Star Wars, yet knows the names of the characters . . .go figure!). He has thrown up one more time this afternoon, and has yet to eat anything - his only request was a bottle of "prite an coke," which of course I obliged. =0)

Isaiah will be on a stronger dose of prednisone for 4 days, which will be decreased to a strong dose for another 4 days, to a mildly strong dose to be taken until we go back to St. Pete for his next appointment. While prednisone and steroids help his body to resist anaphylaxis, if his body wants to anaphylax, it will - regardless of what we pour into it. It's frustrating that he's on so many meds, and yet the anaphylaxis just doesn't stop. It's equally as frustrating to know that without those meds, the anaphylaxis is much worse and would happen more frequently, of course, without God's intervention.

In the midst of all of this, I know that we serve and know a God who can and will heal Isaiah . . . I don't know when, but I know He will. I know God has a purpose for Isaiah - He says so in Jeremiah 29.11. I know that God isn't allowing Isaiah to go through all of this for nothing - his suffering isn't in vain . . . none of our suffering, regardless of what it is, is in vain. God knows why Isaiah is going through this . . . as much as I want to fix it all for Isaiah - I know that, in my human strength and limited knowledge/wisdom, I can't. It's not up to me. I hate that Isaiah is going through this - I hate seeing him turn blue, vomit, have problems breathing, seeing his beautiful face swell, knowing he's in pain. Yet, at the same time, I know God has it all under control - He doesn't like to see Isaiah go through this either! He doesn't take joy in seeing us suffer - it hurts Him when we suffer. There is at least consolation in knowing that.

"Plans to prosper you, not to harm you. Plans to give you a hope and a future." While I may not know the plans for my son, I know God's plans are perfect - and I trust Him for that. There is more comfort in that. It's so easy to look at the negatives in the situation, to remember all the meetings with the doctors and every hospital visit, every time Isaiah has ever had any type of allergic/masto reaction . . . without God, I don't know how anybody could handle it. Without God, there just isn't any hope.

So far, our next appointment with All Children's is in November - our Dr. T has decided to go into immunology full-time (hope we didn't scare him off!), ;0) so we have a new doctor along with the fellow we have had (who thinks Isaiah is just the cutest thing he's ever seen . . . apart from his own daughter, of course). =0)