Wow, it has been a long time!

It's not that I haven't had anything to post about, it's just that I haven't had much time to sit down and actually write a post. :0}

Since October, Isaiah continued to have some form of a reaction on an almost weekly basis (sometimes less than a week would pass before another reaction). Each of these reactions

involved vomiting as well as fatigue, flushing, itching, leg pain, headaches, slurred speech . . . it wasn't fun and Zofran became one of our closest friends (as well as one of those putrid, pink hospital pans that Isaiah carried around with him). He even had one of these episodes on Thanksgiving Day.

On December 5th, we had another appointment with All Children's AIR clinic. We found out that the results were elevated - his urine histamine levels, as well as his norepinephrine and a few others. All of these were being looked at to try and determine if Isaiah has a tumor on one of his adrenaline glands (located on his kidneys). This type of tumor can exist for years before it's found. Since Isaiah's levels were

elevated, but not quite high enough to indicate the presence of this tumor, we had to repeat the test. This means more blood work and more convincing my son that peeing in a special cup/bottle is okay . . . as well as convincing him that it is okay to store that big, nasty bottle in the refrigerator (because cups and bottles are for drinking and pee doesn't go in them or the refrigerator). :0)

In addition to repeating the testing, the team of doctors decided to increase Isaiah's Zyrtec and Atarax - both are to be taken three times a day. His Flonase was also increased to an adult dosage to help him with his nasal issues. Of course, all of this means that we have to return to ACH's AIR clinic every six weeks for a while - except for the next appointment where we would go over the test results . . . that would be in January.

The increase in meds seemed to do the trick - he didn't have weekly reactions for a while until a week before Christmas and then another really bad episode the day before New Year's Eve (which required a trip to the ER). Thankfully, we had a reaction-free Christmas and enjoyed spending time with my cousin, Nancy.

When we returned to ACH in January, the doctors were still concerned that Isaiah's counts were still high - in fact, they had increased. STILL, they are not high enough to say that he has this tumor . . . which was now given a name - a pheochromocytoma. They took his results to endoc

rinology (literally a few steps down the hall from the room we were in - they share the same floor) to get an opinion. Endocrinology said that we didn't have to make an appointment with them yet, but they will follow his case in the event that further testing (scans) would be needed. At this time, the test will not be repeated, we will wait to see if things improve or worsen.

Our next scheduled appointment??? February. :0}

Somewhere in all of this, Isaiah had an appointment with neurology, had an ENG and nerve conduction testing that determined that Isaiah has peripheral polyneuropathy. What does that mean? Well, we still don't know, bu

t it explains the pain in Isaiah's legs and we were told it is more than likely progressive . . . and may explain Isaiah's hypertonia (over-toned muscles) in his legs and hypotonia (under-toned muscles) in his upper body. Isaiah is no longer considered to have cerebral palsy (spastic diplegia) but something else . . . which means more testing because neuropathy is a symptom, not a cause.

I want to say, very quickly, how proud of Isaiah I am. During all this testing (the ENG and nerve conduction testing, especially), Isaiah has not once cried or thrown a fit. The ENG and nerve testing are painful - even adult manly-men complain about how painful it is (one test involves long needles inserted into your muscles . . . both tests include electrical currents running between two needles/pads). The last bout of blood testing involved 8 tubes of blood being taken and one test being repeated. Isaiah is my hero.

A few weeks ago, Isaiah had another reaction. This one was different and was . . . well, puzzling. Isaiah became really aggressive - really aggressive. The words coming out of his mouth made no sense whatsoever and he was screaming. It wasn't just one meltdown (??? - I don't know what to call it), but two less than 5 minutes apart from one another and lasting about 20 to 30 minutes each (I have no idea how long I was holding him, but I was beyond exhausted when it was over). After Benadryl and other meds were given, he calmed down and acted like absolutely nothing had happened.

The next day, Isaiah was completely flushed - head to toe - and breaking out in rashes . . . then petechiae . . . then bruises. I have never seen anyone break out in bruises before. It was one of the weirdest things I think I have ever seen . . . and quite scary.

Again, meds were given and Isaiah took a nap. I did notify Isaiah's doctors, complete with pictures (one of Isaiah's doctors received the e-mail and called while on vacation in Vietnam . . . AWESOME doctors). No emergency appointment was necessary since we had an appointment just a few weeks away.

Now, on to yesterday's appointment . . . The neurology labs aren't back yet, so that wasn't discussed (did I mention that one of these labs costs $18,000?!? and it's not accepted by insurance . . . yeah, I'm still working on getting that one covered), but the neuropathy was discussed. We talked a little more about the strange episode a few weeks before and it was decided that we did not need any further testing at this point - Isaiah has had tests to look at clotting issues in the past, and nothing unusual showed up. However, Isaiah's meds were increased . . . again. Instead of Zyrtec, Isaiah was switched back to Xyzal (YAY!!!!) and now takes the adult dose 4 times a day. His Atarax dosage was also increased. We were told that if this does not work, we are looking at something far more serious for Isaiah. What that is, I don't know . . . I didn't ask. More aggressive treatment??? Maybe. A new diagnosis? Probably. It's just too much to think about at this point . . . I just want to at least get through these next six weeks before I think about

all of that.

By our next appointment with the AIR Clinic, Isaiah's neuro labs should be back . . . except for maybe the $18,000 one (it depends on insurance and the doctor's suggestions). And, yes, you are reading that correctly (no, it's not a typo) . . . the test costs $18,000 and my insurance considers it to be experimental and they won't cover it. The lab (which is in Georgia and the ONLY lab in the US that runs this test) does not accept Isaiah's secondary insurance. Whatever happens, hopefully, we will find some answers to explain the medical mystery of my son. These tests are not going to mean easy answers, but at least we may have better treatment for his legs/upper body issues that may also explain the odd symptoms we're seeing and reporting to Isaiah's allergists (yes, we know a lot of what is going on is outside of the allergy dept., but they are doing their best to help us get to the right doctors).

Our next appointment is in six weeks . . . I think it's March 29th (I'm so thankful we have the technology of cell phones equipped with calendars . . . calendars that notify us of upcoming appointments). :0) Right now, we are relaxing . . . and Isaiah is happily stimming (self-stimulating - the repetitive movements seen in people with Autism) over his Star Wars Lego video game (hey, he totally needs a break). :0)

I have another post to write about my dad . . . and, yes, it will be before several months have passed. :0}

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?

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

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)

Isaiah is my Hero

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

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

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

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

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

We have an announcement!!!

ISAIAH LOST HIS FIRST TOOTH! =0)

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

=0)

Here is the new toothy (minus one) grin:

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

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

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

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

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

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

A Smirk & Catching Up . . .

First, the smirk. =0)

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

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

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

And, as far as the catching up . . .

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

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

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

So, that was that appointment. =0}

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

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

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

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

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

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

Blessings,
Kelly

Thoughts on the Week

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

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

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

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

This is a "bat-wheels" =0)

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

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

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

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

School Days (& Aquamarine)!

Look who is in kindergarten!

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


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


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


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



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


On to Aquamarine . . .




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

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

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

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






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


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

MRIs & ER Visits

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

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

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

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

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

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

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

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

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

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

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

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

MRI - brace yourself, long post. =0}

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

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

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

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

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

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

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

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

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

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

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

Lab Results . . .

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

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

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

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

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