Wednesday, July 30, 2008

Update and more...

Ana officially has a personal care tech who will come to the house 5 days a week. His name is Josh and he will most certainly need your prayers for the job ahead of him. Lots of changes have happened in the last week and I will attempt to explain everything.
Lets start with formula... Ana is starting a new formula called Nutramigen AA, it is basically the same as the Elecare, but for whatever reason the doctor thinks she may digest it quicker. It is on order and we pray it arrives before we leave for Cincinnati.
Then there are the meds... the Houston doctors have changed her mito cocktail and added a med for her motility. She has gone from 16 doses a day to 29 doses a day! I will try to put that into perspective with a picture, once all of the prescriptions have been filled. They have increased doses and added to the "mito cocktail" in an effort to slow the progression of the disease and give her more energy throughout the day. Please pray about these changes and pray for the pharmacists as they get the new medications ready. Pray that their heads are clear and that no mistakes are made.
Lastly, the braces. Ana has currently been in an ankle high brace called SMO's. In the last 7 months she has lost alot of muscle tone, causing her thigh muscles to tighten and her other muscles to become too loose. The change in muscle tone is causing her feet to turn in and her walk to be unsteady. To address this problem they have prescribed braces called an AFO's. These new braces will go most of the way up the calf on each leg. I will get pictures up as soon as the braces are made and she is in them... probably 2-3 weeks.
Now that everyone is updated on all of the changes, here is our schedule for August...
1st - GI appointment in Savannah
4th - Hanger appointment in Beaufort... castings of the feet and lower legs, for the new braces
6th - We drive to Cincinnati.
7th - x-rays & contrast enema at Cincinnati Children's Hospital
8th - Lecture about the Bowel Management Program & Appointment with Colorectal Surgeon
11th, 13th, & 14th - x-rays & nurse consult
12th - x-rays, nurse consult, and support group meeting
15th - x-rays & appointment with Colorectal Surgeon
16th - We drive home.
20th & 27th - Speech and PT
I will update if anything changes!
Please pray for the travel, appointments, doctors, nurses, pharmacists, and Ana's comfort.

Ana asleep on the airplane to TX!

Ana enjoying another Make-A-Wish day!
Ana's great aunt & uncle who opened their home to us, in TX.
Ana and Emily on the tea cup ride!

1 comment:

  1. I pray for you all everyday, That God give you strength, and keep you healthy. I pray that Ana does not get cramps and I'm praying for her leaking and the list goes on and all.

    God bless you all!

    Erin In Nebraska