Birmingham Children's Hospital

July 11th- My dad flew in after boys camp to be with us.  We drove to Birmingham at 7am the next morning to begin the week of hospital fun.

orthopedics 1pm:

They reassured me that Adi’s spine was not worsening as quickly as the doc in Pensacola told us it had.  He taught me about the process in developing an upright posture and mentioned most kids Adi’s age would have already been walking and building those back muscles for 3 years where Adi has only been walking for one. He said if anyone could figure out what Adi has it is a Neuromuscular doctor and then he spouted out a name.  When I took out my list of docs apts he was the doc we were to see in Dec.  Coincidence? 

sleep study 7pm:

I got to talk to the doctor the next morning before they rounded because we had a 9am apt to genetics.  He said her study was 100xs better than the one in Utah and she would be able to get by without needing the c-pap machine (great news since we can’t get her to wear it).  She still needs oxygen at night though.  Her little brain is still spiking quite a bit but we are going to take her sleep issues one step at a time and not put her on meds for now.  

she is so patient with all the studies we've had her do

genetics (12th)

Pretty much he told me about the same Neuromuscular doctor being known in this area for figuring out patients conditions like Adi’s.  He said we needed a muscle biopsy done so if we decided to take out the g-tube or have any other procedures done it would be a good time to combine the procedures.  He told me when the time came that I thought it was time for the g-tube to come out to remember the tube also serves the purpose of keeping her out of the hospital because it gives me the power to keep her hydrated and give her yucky medicine w/o poking her.  About her immune system and her ability to always be sick he said he thought it was more from the fact her lungs don’t have the strength to cough out the stuff that sits in her chest causing a normal cold to become bronchiolitis or pneumonia.

Ayzie’s Bithday fun  (14th)

We got to play all day w/o any apts.  We decided to go up to Huntsville to see where my Dad went to Junior High.  Then we went to a Hands on Science Museum with the girls. We drove by the NASA Space Museum and drove to a Fun House that gave train rides to kids.  My girls loved it and Adi cried leaving.  Thanks Grandpa and Grandma Nelson for such a fun day.  We decided to wait on cake and ice cream until we got to be with Dad.

gi (15th)

well the doctor was amazing she listened to me and wanted to have a gi study done the following Friday.  The Dietician came in and wanted me to start with night drips again.  Eventually she wants me to supplement with two cans of Vital Jr (a predigested formula) or 16 oz in 8 hours.