Updates!

Sorry that I have not posted in awhile, but no news is good news...right?!

I have some good news and some bad new...let's start with the GOOD stuff first!

Cainen is doing SUPER! He is now fully tube fed, and he's gaining weight like a little champ. He is still a good 2lbs away from Braeden, but Braeden is a little more hardcore when it comes to food he's on the SEE-FOOD diet it seems! Cainen also had five tendon releases in his little legs about a month ago and since then I can actually bend his knees and lower his legs!!! YEA!!! He also got some new braces for his legs that go past his knees to help keep them in a bent position for a good part of the day so that we can hopefully keep his range of motion this time. Cainen is laughing!!! He has been smiling on a rare occation too but now he laughs if I find just the right "spot"!!!!!! Braeden is getting a helmet soon to help with his little head...it was decided that it would be to his benefit because his skull is quite mishapen. I'll take some pics if any of you are interested in befores, and of course afters!!!

Bad new...We had a few yucky appts the last week or so...
Cainen had an MRI last month and we got the chance to sit down and talk to the neurologist about the results. It seems that Cainen has had two separate occurances that caused his brain damage. The PVL was most likely after birth and was all we knew about. Now we have been informed that he may have had a stroke in-utero that caused a huge loss of matter in the back area of his brain. The neurologist says he will most likely be completely blind, without the ability to process the images he sees. I was told this from the get go in the NICU, but now it seems more concrete.

We also had our NICU follow-up clinic this past week. Braeden scored great on every test, although he is not rolling over yet. Cainen however did not do well at all. He barely tracks and does not really move even his upper extremeties a whole lot. I think one of my favorite NICU nurses put it best when she said that Cainen will be my perfect baby forever.

 

Thank you so much for the great update. I have been thinking about you guys. How is big brother Max enjoying his babies? Pls continue to keep us posted.
Megan

 

You are such a positive person, that's awesome. I'd love to see pictures of your wonderful guys!

Thanks for the update.

 

I am so glad you posted, I've been wondering for so long how you and your boys were doing. I really admire your strength and optimism....I think parents facing the obstacles you are
are special people, hand-picked by God. You'll all continue to be in my prayers and I look forward to pictures of your dear little boys!! :hug99:

 

I have been wondering about you as well. It gave me goosebumps when I read the part about Cainen laughing! How wonderful!! Add me into the "can't wait to see pictures" list!

 

I think about you and your boys often! Please keep us updated. I would love to see recent pics of your guys!

Angel

 

Thanks for the update! It sounds like your kiddos are making progress and that you have a lot to be proud of!

 

Glad to hear that they are doing well! Laughing and all! Please add pics if you can! I would love to see them as well.

 

I'm so glad to hear from you! I think about you and your boys often. I'm glad they're doing so well and it sounds like you are just lovin' your boys. Every day is precious.
Thanks for the update and I hope we see those pics soon!

 

Add me to the list ... sounds like you are handling everything great and just love your boys!! It must have been so great to hear Cainen laugh!!! Yes, let's see pics!!!!!!