Thursday, January 5, 2012

Appointments, Appointments every day....

Tuesday was GI... (see this post for that update)
Weds was the NICU Developmental Clinic Follow Up for both babies....
Today was an unexpected (but very good) visit to the Oral Surgeon for Addison...

Lets start with the NICU follow up... in short IT WAS A HORRIBLE EXPERIENCE.

- It was a two hour wait to be seen, another two hours before we were done and on the way home.
- The said the assessed the babies based on "adjusted" age (adjusted age is the age they would be in they had been born on their due date). However, I think their assumption of what a 7 month old should be doing is WAAAAAAAYYYYYY off.
- First they claim Blake should be able to eat with a spoon, and feed himself finger foods (as in enough to sustain himself).
- Blake has tightness in his ankles
- Addison has moderate low tone in her legs
- They should be crawling
- They should be able to remove/replace a peg from peg board.

It was not pleasant. Luckily we had an appointment with our PT today who said that she had to totally disagree with all they said and if she even suspected that Addison had tone issues, etc she would have already referred us to a specialist. Apparently we are not the only family to have a horrible experience and I am almost positive that we won't be going back there in the future. We've got a good team with our Ped, therapists and specialists that I really don't think it's necessary. I will be talking more in depth with our Ped before making our final decision on that.

Now on to the visit to the Oral Surgeon... (Recap... Addison has a Cleft Palate, begins in her hard palate and extends all the way back to the end of her soft palate, it is unilateral and lucky for us isn't a huge opening.)

- First, anytime a doctor, nurse, etc walks in to the room and addresses one of the twins and shows a kind and compassionate personality, wins in my book.
- I love this doctor! Without ever saying "It will all be ok" he was able to reassure me about everything and I instantly felt at ease. Addison will be in great hands.
- It doesn't hurt that the NICU nurses speak very highly of him.
- His office staff is top notch.
- I didn't have to wait 4 hours. We were in and out in an hour.

Her next appointment is in April and then we'll be scheduling surgery then for in the summer. God willing (and provided Addison gets the memo) she'll only be inpatient for 24 hours. SHE BETTER GET THE MEMO! Lol. The surgeon feels confident that she could very well only need 1 (yes O N E) surgery to repair the cleft palate. (PLEASE OH PLEASE DEAR GOD!) At most she could need just one more when she is about 5 or 6 years old.

Special thanks to my mom who was able (with short notice) to take the morning off to keep an eye on Blake so I wouldn't have to drag him along while Jake was working.

I know that I will be extremely nervous as the time draws closer, but I am at peace with this right now and I have FAITH that she will handle this as gracefully as she has handled everything life has thrown her way. In case you didn't already know it, she's one tough cookie! (As always we can use all the prayers we can get, they always help.)

Tomorrow is OT for Addison, let's see if she behaves ;-)

1 comment:

  1. Alot of appointments.. but soo good when it's a GREAT doctor!!