Well, we’ve been home since Thursday night, and I’m still exhausted. The only thing that comes to mind when I try to describe this adjustment is to compare it to bringing home a new born baby – new bottles to buy, formula to make, meals to make, feedings at a certain time, However, we obviously are getting more sleep as compared to a newborn! It took me 5 hours on Friday to make meals to last through Sunday. I’m sure this will get easier with time, and after all in my job I get paid to be organized! I’ll find a new system soon.
Jenelle is doing well, but we are still seeing some seizures, although we’re seeing fewer than before. I think I’ve figured out the source of her “unexplained” fever in the hospital. Upon admission, an IV line was started in Jenelle’s foot. Her foot was then taped to a stiff pad to immobilize the area where the IV line was started. When they took out the IV line on Thursday, and took off the tape, poor Jenelle had open sores on her foot because it had been taped too tightly. We are using Neosporin to help the infection, and it is healing nicely. We are still seeing the subtle “different awareness” in her. I actually think she was watching TV yesterday. She definitely responds to hearing her name and hearing our voices. It’s nice to see.
Jack did really well this past week while Mommy & Jenelle were gone. Brett really worked hard to keep his routine as normal as possible. On Thursday night, Jack asked me where I’d been with Jenelle. I explained that she was in the hospital starting her “magic diet”, and Jack then asked, “Does this mean you fixed her broken brain?” We hope so! It is starting to get more difficult to feed Jenelle as she really does not like her new food. I’m getting more forceful with her and often tell her to “open” her mouth. Yesterday, Jack suggested I say “Abre” instead, which is open in Spanish! He is so smart! However, Spanish didn’t work either – there I times I literally pry her mouth open and shove the food down! We’ll soon figure out what works best.
Jenelle will go to school tomorrow and hopefully the change will help her new routine. We’ll be going back to UCLA on Thursday for a follow up, and to CHOC on Friday to follow up with the GI doctor. Busy week! Thanks for the continued prayers – I’ll keep you posted!