Thursday, February 19, 2009

High risk OB, plus some extra

Hello again,

Had my appointment at the high risk OB today and it went GREAT. The baby is still a boy, and still perfect, and everything with me still looks great. The doctor who saw me remembered us well from last year and is ready to treat this pregnancy with every precaution, but still actually expects it to be a perfectly normal pregnancy. To be 100% sure of that, I'll be going to Nashville weekly to get cervical checks until the baby reaches 36 weeks, and if they see any changes they'll proceed from there accordingly. I'm very relieved!

The doctor reassured me that in his 25 years of high risk OB, he has seen many, many women have issues with twins, and then return and have perfectly normal singleton deliveries. He feels we'll be one of those deliveries...

During the ultrasound I had the tech check the baby's cerebellum to see if there are any abnormalities, and everything looked perfect. That was a relief, since Daxton's geneticist felt that Dax's cerebellum and other brain issues might be related to a genetic disorder of some type, thereby potentially being something we could pass on to another child. Afterwards, however, we looked back at Dax's ultrasound from the week before he was born and found that Dax's cerebellum was also intact and perfect at that time. Believe it or not, this is a bit of a relief for me. As a mother of a child with a disability, you always wonder if there was something you did, something you ate, something you were around, that caused your child to be born anything other than completely perfect. I've often wondered though, since we found out that Dax was missing his cerebellum, if it was a result somehow of his extreme prematurity and multiple health issues when he was tiny that somehow caused the brain to change, and I have now met a few mothers online who had children with compromised health at birth and now have no cerebellums. It's all extremely interesting to me and would make a great research project for an aspiring neonatologist or neurologist... If anyone knows anyone interested!

So onto the star of the show, Daxton is doing fabulous. He saw his PT twice this week after not seeing her for 2 weeks, and she was extremely happy with all the progress he's made. He sat independently for quite a while and showed her how he's almost rolling over, and he stood and talked to her a while... His PT told me during her first visit this week (with a disclaimer that she is often wrong, that these kids prove her wrong all the time...) that she feels Dax will definitely be able to walk, although she feels he may always need an assistive device of some sort to help with his balance. I'm excited about that in one way, because I always wonder if I overlook what I don't want to see in favor of what I do, and also because it was just less than 3 months ago when a neurologist told us he may never sit up, roll over, or walk, or would be extremely delayed if he did. On the other hand, I told her I had to disagree for now, that I see him walking without any assistive devices... Because I refuse to give him any leeway at this point. So on Tuesday we started "Baby Boot Camp" and set a few goals... By April 4, which is his real birthday, he will be rolling over independently, sitting up independently, and will be mobile somehow, be it crawling or scooting. He will technically be 8 months old developmentally at that time, and I feel those are pretty reasonable goals. Then, by July 27, his goal is to be standing independently and taking a few steps...

So the goals may be a little steep, but I feel like if we don't expect a lot from him and push him to do more and make progress, then who will?

The main issue will remain his missing cerebellum, however, and that will be our biggest monkey wrench. The cerebellum is in charge of smooth motor movements and balance, and, well, those things are pretty important when you're learning to crawl, walk, etc... But I'm not telling him there's anything he can't do! (Or maybe I should? You may remember how oppositional he was in the NICU... If I told him he can't walk he'll be in the Boston marathon by age 6!)

As far as cool new things he's learned this week, he's now pushing up onto his hands more rather than just on his elbows, and he's catching on really well to holding a sippy cup... He's also able now to stand for short periods at his little table and manipulate the items on it without ANYONE holding him up. Now, he relies on the table a lot for support, but some on now... It's HUGE that he can do that!

I suppose that's the bulk of our news for the week... Very fact-filled this week, too, I might add. Not a lot of fluff. Very unlike me!

Oh, and as for the house, we're still waiting to hear back from the seller's bank. They told our realtor last week that it could be another 2 weeks before we know... Isn't it great how all these banks are going under, and we're trying to throw money at them and they are in no hurry to take it? So goes life...

Oh well, hope you're all doing well! We love you all and can't wait to let Dax meet all of you! We're getting closer and closer to spring... It won't be long now! Please keep on praying for him and all these other preemies... Along with the families and those who work with them...

And speaking of friends, Baby Payton is doing well at Vandy and they are hoping to push forward with a trach soon... Please please please keep her in your prayers, that this baby will get and stay healthy and be able to get the trach and go home soon! They've been through so much... Luckily Payton is a fireball if there's ever been one, and she ain't giving up very easily!

Ok, love you all! Have a great weekend!

5 comments:

ski said...

yay Daxton!! I wish I was a fly on your wall to be able to see all of the wonderful things Dax is doing! I am NOT amazed...Im proud! I know how hard you are pushing him and he is just trucking right along! Its awesome! Good job y'all!!

As far as the pregnancy...wishing you a full 40 plus weeks may you be huge and miserable and completely thrilled to death to go full term! :)

Ryans Mama said...

Woo Hoo I am so proud of Dax. That is so exciting that he is standing up on his table and able to put the pressure through is little legs. We are working on getting a standing board to support Ry, we'll see how that works. I am just happy to see all of Dax's improvements. Also so happy to hear your pregnancy is going great!

Jennifer said...

Liams brain was fine before he was born too. I found only one research paper on the cerebellum atrophy in micro preemies and it stated that the cerebellum expereinces it's rapid state of growth around 28 weeks gestation. I have it somewhere if you want to see it. My NICU Dr actually said to me "Liam's cerebellum was so infarcted that he would have been born that way even if he'd been full term." WTH? No way- I don't believe it for a second! His brain got damaged cuz he was born waaaay too soon. You sound just like me with your experience with this. They just don't know much about our micros yet. We'll show 'em tho, huh? ;-D

The Snyder's said...

Daxton, I am so very proud of you Big brother.. YOu are an amazing lil guy and I know that your mommy and daddy are giving you a full filled life by telling you that you can do anything that you want if life.. I believe in you as well and will continue to pray for you.. God bless you and your whole family..
Mollie, I am continuing to pray for you and your progress in this healthy pregnancy.. May God continue to give your body strength to endure the whole 40 weeks of pregnancy..
God bless and love yall...
Tiff

Daxton's Personal Assistant said...

Thanks everyone!

And, Jennifer, I feel the same way... What are the odds of having a surviving twin at 23 weeks overcome all the odds, and have a genetic issue or rare disease to boot? It has to be related to the prematurity... IDK, but hopefully they'll figure it out one day!