Saturday, May 23, 2009

Awesome Reports Yesterday :)

Yesterday was a long, busy day, but it was a really good one :) We left the house early (for once) to run errands... Got to Nashville just in time to stop by Krispy Kreme for EIGHT dozen doughnuts and then get over to Centennial for neurodevelopmental clinic...
The geneticist stopped in to see us when we got there... She was VERY happy with how Dax is progressing. She has been talking with the researcher in Canada that is studying cerebellar hypoplasia and prematurity, and she has explained Dax's MRI findings to her... And the researcher says she has never seen that pattern of hypoplasia, with the pons and the cerebellum and the septum pellucidem all missing or very small. (She says if we're ever in the neighborhood she'd like us to stop by so she can look at him. What are the odds of us making it to Canada anytime... EVER???) The Canadian researcher has a colleague she has forwarded Dax's information on to, but it just seems that we're getting more and more proof that Dax is just a unique little boy.
After talking to the geneticist a little longer, it seems to me she and I are both on the same page... We both feel that something due to Dax's prematurity caused his brain issues, even though there is no proof one way or the other that it was an insult that occurred after birth over a genetic fluke. Her gut tells her that somewhere in Dax's early development he had an undetected brain bleed or clot of some sort that caused the damage, and then resolved before it was able to be detected. As brain bleeds are super common with itty bitty babies, this doesn't seem too far fetched. At any rate, now that we have officially ruled out septo-optic dysplasia again, she's done with us unless we begin to see some other symptoms that have not yet emerged... Yay! That's one doctor down... Six more to go??? Five? Seven? I lose count...
So we met with the neurologist after that and he seemed very happy with Dax's progress, also. We have an actual office visit with him in early June, and he will schedule a repeat MRI under sedation for sometime this summer so we can get a better look at what his brain is doing. I'm anxious to get the MRI done... Maybe the brain damage wasn't really as bad as it originally looked? Maybe the brain was able to grow some more usable tissue? With him not being sedated for his last MRI there was some room for error... So, we'll see!
Met with the clinic OT after that and she was also very pleased. Most of the issues that had concerned her at our last visit had resolved, and he smiled and chatted with her and showed off all his new skills.
Oh, and he was 19 lbs 3 oz. Yay! Almost time for that new carseat :)
So, we left there and visited with Dax's old buddies on the high-risk OB and NICU floors, and then we were off. Got home in time for his PT session and he rocked her socks off yesterday :) She showed him 1x how to transition for lying on his tummy to sitting up, and then he practiced it himself for about 15 minutes. She can't get over how motivated he is to learn new things :)
I'm just so stinking proud of him. He's such an amazing boy!
So I guess that's it for now... As a side note, as of right now, we will close on our current house next Friday, and will then finally close on our new house on the following Monday. Everything should be all clear and easy now... but... don't be surprised if something happens and we end up homeless because that crazy bank pulls some nonsense.
So, please keep us and this new house in your prayers.... It's been a long time coming!!!


Chase said...

Thank God for good days!!! It sounds like you had a great one. I need to read more, but it sounds like he is REALLY doing well. We are still feeling like we don't have many answers, but trudging along! We still haven't found Chase's cerebellum *snort* and his pons hasn't grown, but hey, who needs them??? I hope your week goes as well as your last few days have!

Daxton's Personal Assistant said...

Hi! I didn't realize Chas'e pons was small, too... Do you want that researcher's info? Maybe if enough of us contact her she'll start looking at that link, too!

And thanks for the words of encouragement :) Dax is my hero!

Chase said...

Absolutely, I don't know where in Canada she is, but we're 20 minutes from some areas, LOL...hours and hours from others, but you never know. Maybe we could learn something for all of us. I also contacted Johns Hopkins Hospital in Baltimore, Maryland this week to get into their Neuro dept. for an appointment. I've got to start getting some answers or I'll lose my mind. The more I'm reading about about you guys, the more I wish you lived closer!

What is Daxton's *Official* cerebellar diagnosis at this point?

Of COURSE he's your hero! OMG look at these little goobers, how could they NOT be!!!

Daxton's Personal Assistant said...

Good luck, and let me know what you find out!!! I wish you guys lived closer too... But no colder climates for us! :)

Here's a website with her info...

Daxton's Personal Assistant said...

Oh, and we still have no official diagnosis other than cerebellar hypoplasia, hypoplasia of the pons, and completely missing septum pellucidem. We were originally diagnosed with Joubert's Syndrome and septo-optic dysplasia, but they later took those back... So no other diagnosis other than... special? :)