Thursday, April 26, 2007

Tickets please.


Welcome to the eighth wonder of the world we like to refer to as the roller coaster of life. Everyone has taken a ride at one point or another, some voluntarily others not so much. Personally, I think one more spin around the old beast is going to make me yak.


Last week we had the privilege of adding yet another specialist to the list of providers currently seen by Jackson. Dr. Razzledazzle (sometimes I just can't help myslef) is a Peds GI specialist who we were referred to by Dr. R. What I expected to be a very nonproductive visit, which I predicted would include another version of the hurry-up-and-wait game, was quite the opposite. Dr. Razzledazzle was well prepared, took his time with the appointment, and it appeared he had actually read Jackson's chart prior to our meeting. (What a concept!) I was very pleased. (As the roller coaster clank clank clanks to the top and the anticipation of the drop puts a lump in your throat....)


I was even more pleased when he said to me, " I suspect Jackson has Eosinophilic Gastroenteritis". Now long story short, it basically means that he suspects that Jackson has a milk allergy which resulted in an overabundance of eosinophilia (a type of white blood cell) in the wrong places. It could accont for a great deal of his GI issues. So off for allergy testing we went. Simple enough. And simple enough to resolve if this was indeed the case. (Arms up as the car swings down and around the track...)


However, dear reader, as you may already suspect, it just couldn't be that simple. Jackson's allergy testing results came back this morning with a glaring NEGATIVE result to everything he was tested for. (And one more time through the dark tunnel which takes you upside down and sideways unexpectedly leaving you with a mild case of whiplash....)


Back to the drawing board. Could someone please tell me why we willingly wait in line for these things when everyday life often brings the very same sensations?

Wednesday, April 11, 2007

Positive news from negative results!



This morning I received an email from Dr. R, Jackson's Genetic Neurologist, indicating all the testing sent March 15 came back negative. This is great news. For if the testing had produced positive result it would have had a highly negative impact. Positive news from negative results!


I am thrilled with the negative results. I'd like to say that the diagnosis (or lack thereof) matters very little to me, but everyone would know I'd be lying. I'm not sure any parent could ever say that. So I will continue to scour the internet, the library and many other resources for information that may help us help Jackson. I will say though, that while I would like very much to have a diagnosis, I understand it matters very little in the grand scheme of things.

Tuesday, April 10, 2007

Three steps forward, two steps back...

Or is it two steps forward and three steps back? Well, whatever the case is dear reader, I'm certain you get the point.

And my point is this; there have been some positive and very encouraging things happening of late with regards to Jackson. And while I might not necessarily call it a set back, yesterday we encountered a new problem. Hence the step (or two or three) backward.

When he woke yesterday morning, Jackson's right eye wouldn't open completely, his eye lid drooping significantly. After his nap later in the day, it seemed fine. So it seems like nothing to be alarmed about, just one more thing to keep an eye on (no pun intended). Another possible clue to the puzzle that is Jackson.

And he continues to gesture and sign, albeit the response is usually delayed. But we're happy he's waving, attempting to blow kisses, clapping and signing "more" and "eat" somewhat regularly. Every little bit counts!

Thursday, April 5, 2007

Affirmation!



While I was dressing Jackson this morning, Ainsley was in the room peppering me with questions about her upcoming birthday. (She's turning 5 on Sunday! I can hardly believe it!) Specifically, she was asking about the Irish Dancing Barbie we recently bought as a gift for one of her friends. She wanted to know if the store had more of them. To my surprise and delight, Jackson, upon hearing the word "more", put his hands together and signed "more". I was ecstatic!


Who ever thought that word recognition would be so exciting? Nothing like a little affirmation to keep you motivated!


Happy Bunny Day!

Wednesday, April 4, 2007

Knock on wood.




So everyone take a moment and find something made of, looks like, smells like, or even same color as wood and knock on it. Really, give it a good whack.


Now that that's taken care of, I can now safely profess the following: Jackson has no doctor appointments next week. Not one. No injections, no therapy sessions, no testing, no nothing. Nada. Zip. Zilch.


Wow. I am revelling in the amazement that is my somewhat empty calendar.