Monday, December 29, 2008

Kiddo updates

Aybra is well. She has learned how to wiggle around and now does it everytime she is put in the floor for tummy time. She will wiggle and wiggle until she is off of her blanket. She likes to watch TV and if the boys are watching something then she watches too. She is a very distracted nurser lately. She is just too interested in everything going on around her. She will suck for a few seconds then pop off and look around. Its making feeding very hard. Also she is getting to where she prefers her bottles. Hopefully she can get off of this darn medicine soon and get back to 100% breast. This pumping for her and Alo is killing me. Its not that bad too just pump for him but with her I never know when she is going to eat. Lets see... She jabbers a lot.. Like a TON.. Oh and she spits a lot.. probably more than she jabbers. She is very happy and thinks everything is hilarious. Her brothers never cease to amuse her.

Alo is Alo.. He got his AFOs and his KOs. The AFOs are soooooo tiny and then to think his leg and foot is even tinier than that! He doesnt seem to mind wearing them too much. His KOs he hasnt worn all that much yet but they are to help stretch his knees and position his legs better so he will wear them mostly during bedtime, but they have a lot of support and make it easier for him to do weight bearing so he will be using them for PT as well. He is getting better with pulling himself up. He is much much MUCH louder when he yells... If you have never had boys then you wont udnerstand but him and Kaia like to have yelling matches. They just sit and yell and yell and yell... Tis the life with two boys.. Im sure Aybra will be joining in soon.

He was a bit sick during the Holidays but recovered quickly and on his own! Woohoo! We are still holed up for the winter. Only a few more months to go and we will be free!!!!!

Kaia got a guitar for Christmas and is singing a lot of cute songs.. Two of them go like this:

Number 1:
"When I was a little boy I had a boat and I went to the river to see if it would float. It sinkeded so I went back home and my feet were wet from the water so I took my shoes and socks off and my feet were nasty and stinky"

Number 2:
"Twinkle twinkle little star, what did you have for breakfast? Did you have a poptart? Did you have spiderman? Did you eat the whole house? Twinkle little star what did you have for breakfast?"

He is doing extremely well with his school work and memerized his landline within 5 minutes, no joking. Papa taught him his mobile # but Kaia forgets some of it still. Kaia has graduated most of his PK work and is working on K stuff. Ive had to change a lot of my plans and goals for him throughout this year because of how fast he has learned things. This is one of the great things about homeschooling. He doesnt have to be bogged down with work that is too easy on him. Instead I can work in things that suit him.... like following directions. Hes not quite learned how to do that yet but Im guessing he might be an adult before he really learns that..

Thursday, December 11, 2008

Spina Bifida Clinic

Alo had spina bifida clinic today.. That means we did urodynamics, vcug, ct, shunt series, ortho x-rays, then saw ortho, saw neurology, saw PT, saw rehab and saw nutrition.. I HATE these days. They are sooooo long.

But I have good news... Alos last urodynamic study his bladder maxed out at 34ccs but started leaking around 28... This time he held 120!!! That is HUGE!!! Still not what its supposed to hold but that is a huge jump.. Also he doesnt have to see neuro or Ortho for 2 years!!!!! The bad news is if his fonatel is still open then they will talk about skull reconstruction. Yikes!!

Right now his fontanel is open from his forehead going back towards his ears... Its about 3 inches wide and 6 inches long from front to back.. Its closed a lot in the past 2 years but still has a ways to go. About 2 years ago it was probably 9 inches long, 3-4 inches wide and went from near the back of the top of his head to his eyebrows and he had an open spot on his forehead between his eyebrows... so he has made progress.. and hopefully will continue to make more.

And of course still no weight gain... Holding steady at 12.8k

Friday, December 5, 2008

Bracing, etc

Alo has been needing AFOs and some stretchers for quite some time now but we have never really gotten around to doing it.. Well Mr Steve from Snell Prosthetics and Orthotics came and cast Alos legs for the braces on Monday. Alo didnt seem to mind too much but gave him a few funny looks towards the end. Kaia got to pick out the colours. He wanted hot pink at first but ended up getting a truck theme with blue velcroe and multi coloured padding for the AFOs and the stretchers are going to be a sea theme with black padding and dark blue velcroe. Alo will have them in approximately 2 weeks.




Make A Wish

I think I may have found the wish for him... I said before nothing like Disney World because I planned on taking him there anyway (once he was older and more "stable")... I didnt want his wish to be something that I was going to do anyway. I mean whats the fun in wishing for something that you can do any time, right? I wanted it to be something that he would never get to do otherwise and be something that he will remember... Well the remember part Im not so sure but Im pretty sure Ive found the wish.. I just have to get it approved by the wish granters and funded.

This is it:

Its a park in Florida dedicated to special needs kids.