Happy Thanksgiving!!!

Thankful

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 . . .

. . . 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 . . .

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 . . .

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???

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

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

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

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

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

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

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 . . .

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)

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)

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 . . .

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)

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)

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

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)

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)