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.

Quick Post . . . =0)

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next time . . . . =0)

Wordless Wednesday . . . sort of =0)

My Little Man is My Hero!

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



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



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



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



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



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

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

Memorable Moments Monday =0)

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

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

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

"Hello, world!" =0)

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

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