Wednesday, August 31, 2011

3 Glorious Words

OFF WHILE AWAKE!!!!!!!!!!!!

Abby is officially off of the vent whenever she is awake and only needs it while she is sleeping.  We go to the pulminologist next week, where she will decide if Abby is ready for a sleep study.  This is when Abby will spend the night in the hospital hooked up to a bunch of machines that will monitor her breathing patterns and let us know if she is having any apnea.  If she's not, we will hopefully get the go-ahead to start weaning her sleeping hours too!  (We'll start with naps and work our way up.)

This is sooooo exciting for us and we are really enjoying the freedom without the vent.  When Abby gets her helmet off for good, she will really be "low profile!"  (People don't seem to notice the trach nearly as much as the helmet, which is funny since the helmet is the much lesser issue.)  We haven't gotten brave enough to go anywhere without having the vent in the car yet, but it's nice not to have to bring it into the restaurant or onto the boardwalk. 

We are loving the summer and especially the cooler weather we've been having the last few days.  I'm kind of dreading the winter when cold and flu season is in full force and we have to be super-careful about germs again.  (Well, we still are, but even more so!)  Until then, I'll just enjoy the nice weather while we've got it!


debbie said...

It just keeps getting better each day. Abby's progress is simply amazing - it seems her progress over the past 10 months and 9 days can be viewed as "leaps and bounds" vs. baby steps. Go Abby Go!!

Kara said...

I am so very excited and happy for you and Abby! I know this is such a HUGE step in Abby's progress and it can only get better from here!!

PS- definitely got goose bumps while reading this!! :)

Anonymous said...

I have been reading your blog off and on for the past couple of months, and i just think its so neat! Its neat to read about a family with a special needs child, and how you handle life and any other situation with God at the center of it. I am so encouraged by it. I live In MD and i know your husband. I attend one of the grace churches in the area. Anyways, I am taking a special education class and I have a paper to write on a disability.. so I was going to ask, how common is Abby's? and do you know if there is a lot of research out on it? or is it something that isn't diagnosed often, and there isn't much research? If you could help me, I appreciate it!

Julie said...

Hi! I'm not sure who this last person was (you are listed as anonymous), but email me at and I will fill you in. Her syndrome is extremely rare...there have been only 60 diagnosed cases. In some respects, it's pretty interesting. In other respects, it may be hard to write about it. Email me and I will tell you more! :)