Tuesday, September 21, 2010

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)


1 comment:

Adrienne in Ohio said...

Not that my son's asthma in any way compares to your son's difficulties, but I had a similar conversation with our pediatrician regarding the Singulair. I had brought it up because it seemed easier than the breathing treatments twice a day that we were doing. The doctor told me that I might hear of studies that indicated it caused behavioral problems. He said he had seen a few cases of increased hyper-activity. But it wouldn't cause him not to utilize the medicine--just to be watchful. We ended up not being able to use it anyway. I hope you will be able to get all the care your son needs.