Wednesday, March 02, 2005

Another trip to UCLA

Well this update will hopefully be brief as I am nursing a sore shoulder (which makes it difficult to type) which I will detail later in this update. Last Thursday, UCLA called and had a cancellation appointment with the dietician for this Monday (2/28)- so we took it! After we made that appointment, Dr. Shields decided he wanted to see Jenelle again as well, so Friday and Monday I was frantically trying to get that visit approved with our HMO!

We spent the weekend in Lake Arrowhead with a friend of mine and her son who is Jack's age so the kids could build a snow man (something Jack has been wanting to do since Christmas!) My shoulder had been bothering me prior to the weekend, as if I'd slept on it wrong, and then really started hurting when I lifted Jenelle into her car seat on Saturday evening. Remember, she is 26 pounds of "dead weight" with her disabilities - I fear this shoulder injury may not be my last! Then again, it could have been my shoveling snow? The pain was so bad on Sunday, I went to urgent care for Vicodin and Ibuprofen - they think I injured my rotator cuff! Of course, Mommy's pain takes a second to getting Jenelle to her appointments, and we drove up to UCLA Monday afternoon to meet with the dietician and Dr. Shields (with Mommy on Vicodin - fun!)

The diet will require lots of liquids for Jenelle, and some of it can still be used with her jarred baby foods! Sounds like it should not be too problematic, and she will get some variety. We are scheduled to start the diet at 9:00 a.m. on March 14 - again assuming we are not bumped by sick patients. Luckily, the family I mentioned in my last update did not get bumped, but I'm told they waited until 10:00p.m. that day to get admitted to the hospital! Thankfully they did that so as not to disrupt the schedule for anyone else (like us!) We got lots of information on what to buy before hand (real butter, real mayonnaise, Centrum vitamins, etc.), and the week she is admitted will consist of lots of teaching for us, and hopefully Jenelle will become stable quickly!

Dr. Shields saw Jenelle because he was concerned with her bi-carb levels and recent seizure activity. He explained that there is no "buffer" on the scale used to measure bi-carbs, and that if her bi-carb level was 15, it was most likely that 80-90% of her blood was acidotic. Not something to fool around with, and definitely something to watch while on the diet. He wants more blood work done next week, prior to our admission to check her levels again. We are going to come down even lower on Topamax to see if that helps! Also, remember I mentioned Jenelle's constant constipation? We have an appointment for 9:00 tomorrow to see the GI Doctor at CHOC. Dr. Shields felt that she was very backed up, and was relieved to hear we were getting in this week. He did say we should think about inserting a "G-Tube" for feedings, especially if Jenelle does well on the diet. A G-Tube is a tube inserted into her stomach where you can feed her directly. With Jenelle's inconsistent appetite, and problems swallowing, it is something to consider if the diet works well for her, so we don't have to fight her each meal. Eating all of her meals is important on the diet, as is the times in which she eats. A G-Tube is something I was hoping we could avoid, but I realize it may be necessary. Dr. Shields wanted to start a bi-carb supplement, but then agreed with the nurses that we should wait to see how she does on the diet first. Everything else looks good so far - now we just hope she stays healthy these next few weeks so we don't have to postpone our start date!

I finally got into see an Orthopedic Doctor yesterday, and an x-ray shows I have a calcium deposit on my rotator cuff (right arm of course - as I'm right handed!), that is probably causing too much inflammation. I got a cortisone shot, and am still in some pain today. I will check back with him on Friday if there is no improvement.

And finally, Jenelle got her new AFOs (ankle/leg supports) last Friday, and I got some cute photos of that with Jack. With Jenelle not meeting normal milestones for a girl her age, we have to celebrate what we can - even if it is her "first" new pair of "pink" AFOs! :)

Please keep Jenelle in your "healthy" prayers and positive thoughts for the next two weeks so we can start the diet on time! Thanks for the continued support - I'll keep you posted!

1 comment:

Anonymous said...

My son Danny (born with Downs Syndrome) was disgnosed with Lennox-Gastaut. He was medicated for one year (topamax, zarontin and klonopin simultaneously) and was also tested for celiac (test came back negative.) I tried the gluten free diet anyway and all seizure activity stopped. He is also on liquid zinc and probiotics everyday at the suggestion of our naturopath. His development is delayed but he is making progress.