Thursday, February 19, 2009

Update time!!! We are all healthy although a little sleepy at this point in time. Michael is having a good year at WHCA. For those of you that didn't know he got a bowling team up at school this year. He organized and coached the team and of course he was very excited about it. His master's class is keeping him busy with all the reading that he has to do but he seems to be enjoying it.

I trucking along with my school. I am taking math and American Lit this semester so I have quite a lot of reading to do also. I have been volunteering at Dylon's school for nap time since there are only 2 teachers and most days 6 kids that don't nap. This is the teacher's only time for lunch so I go and lend my services when I can. The kids are so cute and funny.

We believe Dylon is progressing well in school. He LOVES school. He never ceases to amaze Michael and I. Last night we were in the car on our way to church and he started singing. After Michael and I listened closely we caught that he was making up a song to Jack and the Bean Stalk while he was looking at the book. It was pretty cute. Since the last post...we have met with a research team here at Vanderbilt Children's hosptial about a study they are doing on insomnia in children with autism. They are looking at the melatonin levels in these children to see if they produce enough or if giving a melatonin suppliment would help. We are going through with this study. At night Dylon wears a little watch looking thing in the pocket of a t-shirt that records his movements when he is sleeping at home. We will switch out the watch every couple of weeks and once we send it in they will download the information as part of the study. We also fill out a sleep diary telling them what time we pushed this little button when the lights go out for the night and when we push it in the morning when he wakes up. The button leaves a little tick mark that with the sleep diary they can collect data when he sleeps. In a couple of weeks we will start giving him 1 mg of melatonin 30 minutes before bed to see if this helps. They will increase the dose every 2 weeks if needed. Before we start the melatonin we have opted for the part of the study that includes a sleep study on the first night to check the movements of body and the brain to see if that affects his sleeping. The second night they are supposed to do the sleep study and also blood draws. After every increase of Melatonin we will have to go back for a sleep study blood draw so they can keep a close eye on him. With this said, we have done the first two nights of a sleep study that is mentioned above. The first night they waited for him to fall asleep before the sleep techs started putting all the probes on him. They were probably half way through when Dylon wakes up like the Incredible Hulk and starts crying and ripping the probes off. They wanted us to try and put him back to sleep but Dylon was having none of it. We told them that the sleep study portion of this research was over. We took all the probes off and were packing our bags to go home when the doctor called and wanted to talk to us. She said that she understood Dylon's sensory issues with the probes and gave us a couple of options. She encouraged us to stay the night because they could video tape Dylon sleeping in the hopes to capture a night terror episode. The other option we had was to continue on and do the blood draw/video taping on the second night. We consented to both so after calming Dylon down we put him back to sleep to be video taped. We left Tuesday for a few hours and went home and showered and gave Dylon a break. Tuesday night went a lot better. His IV was placed aroun 7:00 pm and he went to bed at 8. They wanted to get 14 blood draws for the whole night. His IV stopped drawing around 11:00. They got 6 out of the 14 blood draws so I wasn't too worried and I didn't want them to do another IV. He did very well and we are proud of him. This study last up to 4 months so we might be in and out of sleep studies until May but if it helps it will be worth it. I can honestly tell you that deep down inside I am hoping that 1 mg of melatonin works so we can stop there. That is selfish I realize but I hope this really does work for Dylon. For those of you that haven't seen the video look below this post for you viewing pleasure of Dylon dancing.

We hope you have a great day and love and miss most of you!! :>

3 comments:

Julie P said...

do you miss me or not miss me?

Anonymous said...

We love you guys!
Christie

Anonymous said...

I hope that he comes up with a new dance for the new card we sent! ;)

We miss y'all!
The Halcom Gang