Sunday, July 19, 2009

A Very Complicated Time, May Bring Answers...

Sorry I haven't posted...we've had a very interesting/involved couple of weeks. I'm not going to go into too much detail, but I will say that Chase had some special blood work drawn on Thursday to test for a specific type of syndrome. We've been in contact with a few doctors out of state and one (who has played a major role in suggesting this diagnosis) in Montreal. We'll give full details when we get the results (hopefully late this week!)

I will only say this, if it's positive, it not only explains Chase's symptoms, but Trey's as well. Different symptoms, same syndrome, as amazing as it sounds, we'd have so many more answers than we EVER had hoped to have!

Chase has a VERY busy week coming up. On Tuesday he has his MRI under general anesthetic. Wednesday is his 3 months follow up with his ophthalmologist to discuss surgery to correct his strabismus (eyes crossing). Thursday we go to a NEW doctor (just what he needs, right?) to be followed by hematology to have his clotting factors tested (liver function).

Aside from the medical mumbo jumbo he's doing great. This week his new thing is playing sooo big, and stretching his arms up as high as he can! He and the dog have begun fighting over the sun spot on the living room floor in the morning, it's great, Riley's trying to sleep, Chase's trying to play and they're all squished up back to back trying to soak up some sun, neither willing to budge!

He's trying new foods. This week he's tried chicken, pork, baked potatoes with cheese, crackers with soynut butter (YUM!), pancakes, black olives...I had to, they're my favorite. Everyone is horrified, but he loved them!

Well, as soon as I get results I'll fill everyone in. I can't imagine what it would be like to KNOW!!!!!

I have to take a minute to thank Mollie, aka Daxton's Personal Assistant, one of my Blog Buddies. She lives down in Tenessee and her son has a milder case of cerebellar hypoplasia (also with no diagnosis or cause at this time, I say milder because he has some cerebellum, it may not be the right term...). The doctor we have been in contact with from Montreal offered to work with her son if she ever got up there...figuring the distance was too much, she passed along the info. to me...Mollie...Dr. L. may have led us to a diagnoses this week....which would not have happened without YOU...thank you so much for sharing the info!!!

I will be in touch after the MRI if we get to talk to the radiologist...

Take care!


  1. Okay, so you just brought tears to my eyes! I'm so glad the info was helpful... I'm so happy you'll finally be able to KNOW what's wrong... What a blessing! Thanks so much for letting me know!!!

    As for Dax, yeah, we're astounded. Even his neurologist is scratching his head, but he says sometimes the brain is just able to reroute itself somehow or the other, and we'll just go with it! He's pretty wobbly, but he's actually catching up with his corrected age as far as motor skills... He just looks drunk while he's doing it :)

    Good luck this week, and let us all know as soon as you know something!

  2. Gosh, I can't wait to know so I can only imagine how you all feel.

    Stay strong