Thursday, October 16, 2008

San Diego (or not), baby carriers, etc.

Well, we had a post-hospital follow-up with our regular neurologist on Wednesday afternoon. He said that the test we were heading to San Diego for could be done at the lab at our local hospital. So at the last minute we called the doctor on call in San Diego to see if we could do it that way. He agreed, so we stayed home after all. Marshall is still taking the couple of days off to catch up on some projects at home.

The neurology appointment went well. We were the last patient of the day, and the doctor really took his time to answer questions and listen to what I had to say. He agreed with me that it seems likely that Timmy's "seizures" were probably a really bad reaction to being WAY overfed and on some meds that didn't agree with him, and we are starting to wean him off of his seizure meds. This is fabulous because they seem to upset his stomach so hopefully he will start to sleep better and feel more comfortable in the upcoming weeks. The bad news was that he suspects that Timmy is starting to develop signs of tunnel vision, which could potentially lead to blindness down the road. This is somewhat common for Leigh Syndrome kids, but it is a big fear of mine -- especially since he does not have the strength to move around much, and he seems to enjoy books. So I need to make an appointment with the eye doctor next. Maybe more vitamins too?

On a more positive note, my Bible study small group pitched in to buy us a new baby carrier. It arrived yesterday and I love it already. Just tie and go! No buckles or leg slots to maneuver. We walked around the outdoor mall this afternoon (stopping of course at the Apple Store to look at the new laptops) and as it got dark, Timmy fell asleep in it. Yay!


Anonymous said...

Oh, Lara, this is wonderful - well, mostly. I feel for your concern about the tunnel vision. Just keep up the reading. Your voice will be soothing even if and when he cannot see the page. I'm glad you didn't have to go to San Diego, and that Marshall can spend some extra time at home. Thank you, Lord, for answered prayer in small doses.

Anonymous said...

I was thinking about the book comment, and while it is tragic for your own child to lose his sight, the more you read to him now while he CAN see, the more he will picture the books while you reading them later! Plus sometimes kids actually like listening to the stories rather than seeing them...using an imagination is a wonderful thing! :) But just like Nana said, even the soothing sound of your voice will be wonderful to him! It's easy to think of the pictures you remember from the book while hearing your Mama read you a familiar story!