Sleep??? Are you kidding me???

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 The nursery that I took such pride in has now been replaced by what looks like an institutionalized room for the criminally insane.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.

The picture of an Angel...

2010 Angelman Walk-A-Thon

We wanted to again thank everyone for coming out to support us this year at the 2010 Nashville Angelman Syndrome Walk-A-Thon. We had the biggest team this year and everyone loved our customized shirts. We are truly bewildered by the love and support we have around us. God has blessed us beyond belief!

Also, we raised close to $3,500 with the additional money we submitted on Saturday (not online). Thanks again to everyone that helped make this event such a big success!!!

Making Myself Promises

I keep making myself promises to do better on this blog. I want to update it more so I can remember all the things we've done and just how far Kendal has come. Sometimes I feel like nobody even cares to read it because it's boring everyday stuff, but I know it is good for me to stop and write these posts. It helps get out all my frustrations and reminds me just how good life is when we have one of our good days.

One of our good days is illustrated in the pictures below. I am terrified of horses! Don't know why, just know that they are much bigger than me and that they can hurt me. We visited my aunt and uncle who have horses and something told me I really should not pass down my fears to Kendal, who actually might enjoy them. Alot of children with Angelman Syndrome do hippotherapy. Kendal has never really needed this additional therapy so I never pursued it, but she did so good! Look at my little brave baby! My sister Katie and my aunt Kristy held Kendal in place, while my uncle Joe steered Bo(the horse). I think the pictures tell the rest of the story.

I look at her and am so amazed. I know all parents must feel that way about their child - but maybe because of her disability, I don't take it for granted as much as most parents. I truly can't fathom why God blessed me this much. I am just humbled to have this life, thank you God for your grace!

Tomorrow I take Kendal to the Neurologist and then to the Developmental Specialist. Both of them are follow up appointments so I am not anticipated anything new. I am however really looking forward to her appointment on Friday to see another Sleep Specialist. Her sleep has been really bad again, and with James working nights, I am on my own with her. This particular doctor is supposed to be more familiar with her disorder and why sleep is so affected by it. If I have another doctor tell me she needs a routine, I'll think I'll kill someone! The girl has more routine than anyone - Her nighttime schedule is exactly the same everyday (+/- 5 minutes). I can't possible fit anymore routine into our schedule. It's not the routine that throws her off - it's her brain! I will definitely do a post on this appointment.

Got to run for now, but will really try to do another post by the end of the week!