Friday, July 01, 2005

July 1 update on Jenelle

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!


Kyra said...

I have been following your journey and thought I would finally post and tell you hello. I've been hesitating because I wasn't quite sure what to say. I'm sure you've heard it all before.

My thoughts and prayers are with you and your family as you travel this road. The path God lays out for us isn't always the path we would have chosen on our own, but it can bring us to spots of unimagined beauty, joy, and peace. I pray that your journey is filled with these respites and that you are able to hold onto them to help you through the difficult times.

May you awake every day to the knowledge of God's love and peace.


Kelly said...

Thank you so much! I often wonder if anyone is out there reading this, and am pleased with your prayers and support. It also is an inspiration to know Jenelle is touching lives in ways she may never be able to do in real life. Thank you and God bless!