Cant believe school got out for the boys last Thursday and summer has begun. The month of May was really busy with end of the year awards and ceremonies so I have not had much time to do much of anything.
Megan is doing okay so far with the trach gone. We have had some trials already that although were scary proved once again she is tough. A week after she was decannulated she came down with bacterial bronchitis - compliments of Daddy and James. James was down with it bad so I was really afraid of how it would affect Meg. She did need three abiotics but the fact that she did not need oxygen or breathing support via equipment OR a hospital is what counts. I spent an entire week doing nebs and vest therapy. I dont mean periodically either. Every two hours I did nebs and then vest that takes 30 minutes. So it was an hour of treatments every other hour. I think I almost went crazy at one point but reminded myself that it was okay since we were not in the hospital and at least at home doing it. NOOOOOOOOOOO sleep that entire week did not do much to help ease the craze.
Her stoma is almost closed. It is a little pinhole now and hopefully it will close over the next few months. Dr. does not want to stitch yet since it is invasive and requires a two day stay and cutting the skin inside the throat behind the stoma. I agree that she does not need that and we dont need to borrow trouble. She is getting so much stronger in the neck and trunk since the trach is gone. Sits up nice and straight and is activating her own head movement. It is subtle movements up and to the sides but from nothing that is huge. Keto diet is coming along. She is on ketocal now which is milk based and digesting it and growing!!! She is getting nice and full looking. Heavy feeling too.
Make a Wish was here last night to meet with us and we decided on a room redo. New wood floors instead of carpet that is gross from formula and meds. A beautiful outdoor fairy wall mural - some built in shelving to the cieling around the window. A beautiful little girls palace with much more space and hidden medical stuff. I get to relive my dream room with Megan. I am excited.
Traveling to Atlanta the week of the 28th to see the geneticist. Brand new buccal swab DNA test that screens for about 600 different metabolic mutations. Her mito geneticist is certain that a metabolic condition triggered the mitochondrial damage. Although the mito damage is the secondary disease it is the bigger problem not due to the nature of it. If we can find the metabolic primary portion - who knows. Maybe stem cells?? I have hers and Ryan's cord blood stored. Another big deal.
All in all it is moving along. Of course out daily challenges are still large they are much more manageable. Especially since we can move much more freely without equipment. Only a feeding pump and diaper bag. Woohoo!!!!
I know this is a run on but it has been soooooooooooo long.