Kendal is as resilient as always. She continues to amaze me. She has more things to do and places to go than most children her age, and yet she handles it so well - especially considering she doesn't sleep much! On the other hand, it's really all she knows. I look back and realize that I started her in all her therapies when she was just 12 months old. She has been doing all this stuff for 75% of her life. She's such a fighter!!!
Kendal's sleep issues have continued to get worse over the last several months. This is a common problem with Angelman Syndrome, although I don't think the doctors quite understand the cause, except that it is something with the wiring in the brain.
Kendal's bedroom is empty. When she was an infant she had the most beautiful room. I spent alot of time and money decorating it so it was just perfect. Over the last 2 years, we have had to slowly remove things from her room that could injury her. It started with the pictures. She would wake up and swing her blanket at the pictures to knock them off the wall. The beautiful curtains also had to be removed as one night she ripped them off the rod. Her bookshelf that I spent hours arranging all the decorative pieces and books on had to be removed because we were scared she would try to climb it and pull it over on herself. Her dresser came out of the room too because she would climb on top and not be able to get down. In addition, the box spring had to be removed because she would wake up and have a total fascination with taking the mattress off the box spring and trying to tear into the matting on the box spring. Plexiglas went up over the windows and the only thing that remains in her room is a mattress on the floor and a shelf on the wall. The two items on the shelf are a baby monitor and a sound machine (each of which have been velcroed to the shelf). The nursery that I took such pride in has now been replaced by what looks like an institutionalized room for the criminally insane. Oh, how far we have come.
I can't quite describe what it is like going through this. James works nights and I am alone with Kendal most nights. She usually wakes up around 2am-3am and does not go back to sleep. Therefore, over the last couple of months, I have probably only averaged 4-5 hours of sleep a day. I have always been the kind of person that required alot of sleep and I will tell you that being sleep deprived has caused alot of physical and mental lapses on my part. Of course, I still work full-time, and my work has suffered lately from my exhaustion. I have forgotten important things, not had the best attitude, and have continued to over-extend myself.
We saw a sleep doctor at Vanderbilt the Friday before last and began Kendal on some new medication designed to aid with her sleep issues. I really liked the doctor. I know pretty quickly the good ones from the bad ones with as many experiences we have had with doctors. She is the department head of Neurology but she was very down to earth and she asked alot of questions and listened thoroughly to my answers. She has a child with a disability and I find that when that is the case, the doctor always seems more understanding and concerned. The medication prescribed is called Clonazepam (Klonopin). We have already increased her dosage twice in accordance with the allowance the doctor gave us. It does seem to be helping a little now that we have increased the dosage to 3 dissolve tablets a night. We are also still giving her a nightly dose of Melatonin. We now just need to pay close attention to the way she acts over the next couple of days. As always, the scariest part of the medications can be the side effects. Since Kendal can't tell us how she is feeling, we just have to judge by the changes in attitude, crankiness, aggressiveness, etc.
Although I already feel like we are going in the right direction on this medication, I am just so happy that we are now with a doctor that really seems like she is trying to help us. Since the appointment, I have had email contact with her and she will be calling me tomorrow evening to discuss the progress with the medication. The only other thing she mentioned in email was possibly looking into the a safe bed (http://www.sleepsafebed.com/index.htm). This would absolutely be a last resort but we are keeping our options open - Kendal's safety is the most important thing for us and as she gets older we definitely want to protect her during her nightly escapades.
I will try to update how the medication is continuing to work. I know that almost all the Angelman moms I have talked to have had similar stories of their own. I hope this can prove beneficial for someone experiencing similar issues.
Austin's Army Shirts
9 years ago
