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!