Well we have been home with our family complete for an entire month. It sometimes feels like they have been here all along, but other times it feels like we just arrived home.
The boys have changed a LOT since they have been home.
Adam has gone from a size 18 months to a 2t-3t depending on the clothes.
He cried a lot more now when he needs things.
He yells num num whenever he is hungry.
He wants Dada all the time and voices it often. (he even saves dada all the best giggles).
He went from eating about 500 calories a day to about 1400 calories per day.
Matthias has not changed size of clothing much, but he is actually able to keep his pants on.
He was so skinny before that they would fall right down... even adjustable waist.
He is learning to seek and enjoy affection.
He is favoring Daddy and Mommy to other people.
He is gradually making more eye contact.
He has stopped banging his head except on rare occasions.
He chews and drools less.
He is learning to play with toys.
He is eating much more food and learning what he likes and doesn't like.
We have a medical update on Adam......
Adam update from today..... Adam's shunt is working. The doctor put it like this... When he looked at the scan, he was trying to figure out just how fast he could get Adam in for surgery. Then he read the file, saw his age and learned more about his situation. He considers Adam's condition to be chronic meaning that the damage done by the lack of treatment for over 5 years cannot simply be "undone" or fixed. He still has a LOT of fluid on his brain, but it has to be that way. The cavity in his head must be full or else his brain would just slosh around. He was very impressed by Adam and how well he was doing. His main goal (other than monitoring him closely) is for him to gain weight and strength so he can hold his own head. The orthopedic surgeon confirmed that Adam will need surgery on his hips if he will ever stand on his own (or at all for that matter). He also is concerned about his spine. We will have a spine MRI in a couple weeks to confirm whether or not he has a tethered cord. Hip surgery, eye surgery and oral surgery cannot be scheduled until that is dealt with.
As far as his hips go.... he has hip displasia caused by never being upright. The hip sockets form as babies learn to crawl, cruise and walk.... since he did not do any of those his hips never formed.... he basically said his hips are rotated 90 degrees which is like the worst case scenario......
he is planning to go in and surgically restructure the hip sockets so his hips will stay in place
Here a link or what a tethered cord is...http://en.wikipedia.org/wiki/Tethered_spinal_cord_syndrome
Here are a few pictures from the last week or so.....
We use this infant seat to prop Adam up for feeding, but Matthias thinks it is an awesome toy :)
My men looked so handsome all ready for church
He did not like the tie and button up shirt
I think he is so cute with a hat on :)
One of the girls left this tutu by Adam and he loved how it felt
Church this week..... He didn't mind this outfit :)
This is something they were having us do for Adam's hips, but it turns out he has to have surgery instead
I love my snuggle time.
Alyssa always thinks she needs to be right by Adam
A little case of monkey see, monkey do.... Brittany was doing this.....
and Matthias tried to copy
It must have been exhausting because this is the only time he has fallen asleep in the car
Alyssa was tired too
Cousin Emily trying to help Matthias get a drink. He may have helped and ended up soaked!
Getting ready for first hair cuts
bye bye curls
So handsome
My Aunt Charity cut their hair
Adam's turn
Sooo cute
Adam getting casted for DAFOs
Trying again since the first time hardened too fast
Oh and yes that is an exacto knife
We chose the blue sport balls
knee immobilizers
Poppy trying to give Matthias ice cream
Alyssa holding "her baby"
Matthias seeing a balloon for the first time
Keeping himself entertained at Grandma's birthday dinner
he hates the flash lol
Grandma
Kait
Britt
Alyssa
Waiting for our MRI
He did not like getting an IV
Still not all the way awake
Meeting new friends
Hard to believe it's been a month already!! Glad things are coming along well for you (I read your previous post too, thank you for the wise counsel!)
ReplyDeleteIt is wonderful to see your handsome boys growing and making developmental strides. I know that you must be working very hard. May you all have continued blessings!
ReplyDeleteYou are rocking this HARD job, Jaclyn! I know you would from your first email to me! I love seeing how far your boys have come in such a short time! Wow! How much Adam has grown!
ReplyDeleteThanks for sharing the adventure !
ReplyDeleteLovely hair cuts !