Friday, September 7, 2012

Catching up

I apologize for the long space between postings, life is crazy as usual! So what is new with our journey with mito...

Audrey continues on her PN and lipids through her PICC line 24 hours a day. It has been 4.5 months and she has not made any progress with her feedings. The good news is she is growing well. Her height is up to the 65% and her weight went from the 8% to the 80%!!! So she is on a little TPN diet right now :) She looks great right now so that is what is important. Her feeding intolerance continues to be a source of frustration. She receives 17mls an hour and her goal is 40mls per hour. So she is not quite at half her rate. Any attempt to increase has been met with disaster within a few days, her gut just stops working. She pours out huge amounts of bile from her g-tube and nothing comes out the other end. Oh well, I guess the PN is what she needs right now.

Aside from her nutrition, since I wrote last Audrey has had 2 hospital stays, 3 procedures, 3 x-rays and 2 blood transfusions. Not to mention her countless doctors appointments. Yep, she keeps me busy. This week has been a big week for change for her. She had her last sessions with her therapists from regional center. This was very sad as she's been working with them for a year now. Especially Anne, her physical therapist. They really bonded and she will be greatly missed. Since Audrey turned three, she started with the school district. She goes 5 days a week for 2 hours and they work her PT, OT and speech therapy into those 2 hours and "normal" preschool stuff like A, B, C's. She's gone 2 days so far and loves it! Yay! For all you who remember my blogs about the horror of dropping her off at daycare, I was understandably nervous about how this drop off would go, but so far so good!

So that is pretty much all that is going on right now. There are definitely changes coming up that I will write more about later and Mitochondrial Disease Awareness Week starts September 16th so be prepared to hear alot more about mito!

Big girl is three!

Last day with Anne :(

A lollipop for Audrey

A happy birthday button

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