Miracle of all miracles - Brett and I actually made it into work every day this week! This weekend we will be celebrating our "independence" from Hospitals and Emergency Rooms (HOPEFULLY - knocking on all the wood I can find as I type!) So, I guess I'm trying to say that other than doctor's appointments this week, Jenelle has been doing well. At times she is still cranky and insomnia is still a factor, but the fever and diaharria have gone, so that is good news.
We had a follow up appointment with our GI doctor on Monday, and Jenelle has gained 2 pounds since the G-tube was placed! She is still taking the special formula at night, but we are adding back Pediasure during the day to see if she can tolerate the combination. So far, so good. She will get a "Mickey" button in 6 weeks, and her G-tube site is healing nicely.
I was a little panicked earlier this week because Jenelle is starting to do tummy crunches again. I was panicked because I thought her Infantile Spasm seizures had returned since that it what they looked like back when she was only 8 months old. I took a video clip of her doing tummy crunches and emailed UCLA. The great news is that Dr. Shields did not think they were seizures, and said, "It looks like a frustrated 2 year old trying desperately to sit up!" Most of her frustration is because she cannot control her movements - so it is all or nothing. Jenelle is still laughing to our delight, and has added a new "sound" ... she has learned how to "slurp". As we were driving in the car the other night, we could hear her "slurping" from the back seat the whole time. Not very lady-like, but we'll take anything new that isn't a seizure.
Below is a photo of Jenelle's G-tube, so you can see what it looks like. She doesn't even notice it anymore, and rolls onto her tummy without any problems. The GI Doctor said I didn't need to use the gauze, but I feel more comfortable leaving it there. Really, the site is now more like a "body piercing" as opposed to a surgical incision. Oh yes, we saw Dr. Patel on Monday as well, and he suggested that we do some blood tests for allergies first before he requests an authorization to Dr. Gillman. Sounds reasonable to me. Also, we will see Jenelle's Kidney doctor this afternoon - so hopefully no news to report there.
Hope you all have a safe and happy 4th of July weekend. Thank you for the continued prayers and support! I'll keep you posted!