As far as Max's team evaluation for his cleft repairs etc, all is going great. The doctor said he is pleased with the outcome of his lip and palate but said we may want to revise the lip repair before Max starts school. It really all depends on if the slight lift on his left side reduces on it's own or if we can bring it down manually by rubbing down on the incision line with our finger.
His right ear that had the tube placement is doing well too. The ear tube itself was coming out, which I had seen a couple of weeks before his appointment (and now has fallen out) and was also plugged, but the good news is that it is functioning like a normal ear should and had no fluid behind it. I'll keep doing what we've been doing though because I want to protect it seeing his other ear is compromised.
The speech pathologist said she thinks he has some speech issues (as if we didn't know) but I ordered a DVD that is put out by the Hospital for Sick Children of Toronto, Canada and she said is an excellent tool for learning techniques to identify and correct any maladaptive speech production and/or patterns. I expect to receive it soon in the mail and will review it with Max's speech pathologist he works with from our home. He is doing really well considering he had his lip/palate repair less than 5 months ago (besides his first palate repair attempt.
All in all a great evaluation.
I also have some news regarding my ongoing medical issues.
As you may have read, I was diagnosed as having Chiari Malformation, a tumor in my thoracic spine and some herniation's to some more discs.... well...I have some more good (sarcastic) news... I have a fracture to my T 12 vertebrae...AND a questionable syrinx.....yippeee
I'm sending my information, along with my MRI to The Chiari Institute (www.chiariinstitute.com), which is the premiere treatment center in the world for Chiari malformation, syringomyelia, tethered spinal cord and other related conditions, and it just happens to be in Great Neck, New York. After sending my info, I should hear from them in about 2-4 weeks. They are already booking for September so it will be a while before they can do further testing. One thing though, is that they can give me their PROFESSIONAL opinion as far as reading my MRI prior to seeing them in person. Very few doctors in the world are true Chiari specialists. Many say they are, but most have limited experience at best.
In the meantime, I'm scheduled for another series of epidural injections, my first of this series being Thursday. Hopefully, I will get some relief from these new symptoms like I have in the past for my others. Keep your fingers crossed for me will ya?!?
Today, Sonja and Max were supposed to go up and take their nap. I could hear Maxie up there playing and chattering along and also Sonja saying "Shhh Maxie! Mommy's going to hear you!" with that, I would say "Please go to sleep" in my best "mother" voice. The whispering and playing went on, and I decided I'd just let them play as long as no blood was drawn.
Dan came home right when they were sneaking down the stairs with the above get-ups on.
Sonja was playing the role of "Supermodel" as you can see. I'm not quite sure what was going on with Max though. He came down with the "Elton John" glasses that Sonja is wearing below, along with the fairy headpiece as a necklace, his shirt and diaper. I'm definitely saving these pictures to show to him someday (or his girlfriend :-)



4 comments:
remember Epidurals and chiropractor are a no no for somebody with Chiari . I would really think that over. It can cause all kinds of problems . Also there are other chiari specialist all over the US . TAKE CARE . yOURS
I did have the epidural.... I maust say it'll probably be my last (I'll post about that "experience").
good dont get another one . some people find out the hard way.
I'm not going to. The risks far outweigh the benefits in my opinion now. My recent experience scared the daylights out of me!
I'm one of those people who seem to find out everything the hard way (I think bullheaded is the terms! :-)
BTW... is this Janice?
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