Wednesday, October 28, 2009

And now for an update!

Last week was Payton's cardiologist appointment. Bob and I were so anxious to get her in there, concerned about her blood pressure issues, but all turned out very well. The doctor told us this is just part of the monster of williams syndrome and not to ever really expect to get it regulated. Her heart looked really strong (which made us relax instantly!) and basically just said due to the narrowing of vessels in her body, she'll have the bp issues. Right now we're doing the three medications and taking them every 2-3 hours. I am so happy to say that I have not gotten a call from the nurse in over a week (and in the past it was on nearly a daily basis). So, it feels less stressful.

We've since had her IEP meeting. I really can't say enough good things about Payton's special ed teacher and her therapists (and her regular teacher as well!). They work so well with her and in the same breath, care enough for her to get her the best education possible. Their biggest concern with her is upper body strength and fine motor skills. Which I guess is typical of most children with williams syndrome. Her teacher said it just stares them right in the face that she needs to have a ton of OT. They're also concerned with her visual-spatial deficit, but if I understand correctly 'doctor' wise, there's not anything that can correct it. We're just working with her to try and overcome some of it. They have laminated some papers for her to be able to trace over her name (she can write letters, but the size is so off and it's very hard for her to connect lines, etc). They're using the Handwriting Without Tears and the great thing is she is actually enjoying really no fits at school.

Probably the biggest issues we've had are our weekends. We've contributed the outrageous behavior to being off of her normal routine of going to school, but we're also thinking some of the behavior may relate to her anxiety to rest time and someone she calls a 'mean girl' in the cafeteria. Payton has hated rest time since day one. Laying down for 20 minutes drives her insane and we all know it's because she's such a busy little bee, she can't sit still. (her spec ed teacher told us she admired us because she is so busy....and in my mind I was thinking - wooh! you should see her on the weekends when she is falling apart!). Anyways, Payton's obsession with laying down and the so called mean girl wasn't affecting her at school. As I've heard from most parents of a child with williams syndrome, Payton keeps it together while at school. However, she lets it all out when she gets home. We probably hear 'the mean girl' about 100 times a night. Add on top of that rest time, when she lays out a blanket and no one in the house is supposed to talk and the lights have to be dim....our house has been full of screaming, yelling, biting, hitting...behavior we hadn't seen in a while and quite honestly had not missed!

It's taken me a while to realize that the resting at home and complaining of bright lights was all attributed to her obsession with rest time. Poor Koen gets whalloped by her if he makes a peep because she thinks he should be quiet because it's rest time (if she had her way we'd all be doing rest time 24 hrs/day). Needless to say, our weekends have been really bad.

However, the school is willing to help us! Amazing to me since they are not having any issues with her at school, we're only having the trouble at home. Anyways, they are pulling her out of rest time so she will no longer rest (she doesn't need to rest anyways) and during those 20 minutes they will give her extra help on her fine motor skills. For the mean girl, they are going to start doing a lunch brunch with her where 2-3 times a week she'll get to have lunch in a quiet room with some of her friends (now as I say friends, they are actually just peers her age. If you ask Payton who her friends are, she will always name off adults, such as her aide or teachers. She will never name someone her age....because obviously she doesn't really play :) The spec ed teacher sat at Payton's table yesterday and asked Payton to tell her a secret....."Is the mean girl in here". At first, Payton said no...then a couple of minutes later, Katie asked her again and sure enough, Payton pointed her out. It is a cafeteria lady that has a loud voice and kind of a snarl on her face. Katie thinks every time the lady yells, Payton thinks she's getting onto her, which she's not. So, hopefully taking her out of the cafeteria a couple of times a week, doing some social stories, etc will help Payton out. (Payton loves to tell me every night that the 'mean girl' put ketchup in her hair, bit off her finger, etc). She's really come up with some good stuff!

The past few months have been quite stressful due to her blood pressure and getting her accustomed to school, but we are getting there and feeling so much better now. I'm proud of how hard she's working and the teachers tell me the other students really enjoy her (*sigh of relief!). More than anything, I'm thankful the school is willing to do what is best for her!

I feel bad - most of my update has been on Payton. Koen is doing wonderful as always! He's still the easiest boy and full of love. Don't know what I'd do without him!! We still call him the calm in our storm :)

Monday, October 5, 2009


Right now I guess it is fair to say our entire house is emotional. I've been so discouraged over Payton's blood pressure. Tonight, I ended up having the on-call nephrologist paged at Children's Mercy to discuss Payton's blood pressure. It was 138/87 and thankfully he said it was way too high and called in an emergency med to get it lowered within an hour. By the time she went to bed it was down to 102/68 and she was exhausted and ready for bed. My heart aches for her. And ofcourse my heart aches for Koen because I feel like so much of our time is spent on the phone with the doctor, insurance, or pharmacy that I am neglecting Koen. Now, if I really step back and look at the full picture, Koen could care less. He's playing, while Bob and I are scurrying around or worried. I'm sure he senses something is going on, but usually he just asks "payton crying" or is escaping from her wrath :) I'm so thankful he's a healthy little boy, cause I'm not sure I could handle two to worry sick over.

Right now I'm at the point of barely functioning at work-I'm too worried about her. We've managed to make it one day (last Friday) without a visit to the nurse and I was hoping for another....but sure enough by 1:30 today she was there complaining of a headache with bp of 138/80. The doc added another med and we'll see how it goes. here's to a better day tomorrow!