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 learning.....so 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 :)

Emotional

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!

Koen amazes me

Everyone has told me all along that Koen would be sensitive towards Payton and wouldn't you know, it's all ready becoming apparent that he wants to help her. We were getting ready to take Payton's blood pressure and she got anxious about it (it's rare anymore that she gets anxious over it, but every now and then it sneaks up again). Koen ran over to her side and grabbed her hand to hold it while daddy took her blood pressure. She still likes to have someone hold her hand when we take it and Koen has obviously seen us do this. Sure enough, he stepped in quickly to help her out. It absolutely melted my heart.

The other time I noticed it was when she was listening to a lullaby on Bob's iPhone. We always laugh because Payton seems to have a love/hate relationship with a lot of different noises. The noises she hates are the noises she is absolutely obsessed with. Train whistles, lullabies (they make her sad), the air compressor, Koen's nebulizer. She hates these things, but yet insists on find them and listening to them. Once the lullaby came on, she started crying and there goes Koen, running to her side and grabbing her hand to hold it. Beautiful.

Sunday morning Koen decided to go in and play on my treadmill (which he is normally unable to turn on, but unfortunately I did not take the key out of it and he turned it on high). Needless to say his feet flipped out from underneath him and he was pushed against the wall getting burned by the treadmill. He burned the back of his head (not bad, but enough to burn some hair out) and then got quite the burn on his arm. The doc gave us some medicine to put on it along with some bandages and wrap and he's doing really well with it. It sure has left a mark with Payton - everyone has heard about her brother getting burned and I'm sure she's talking about it all day at school. Even last night in the bathtub, Koen did great getting it wet. I just knew it would burn so bad when he got it in the water, but that little guy didn't cry at all. Man, I love that little guy.

Back to Payton.....I was disappointed yesterday at church when I heard some little boys making fun of Payton. I knew she would eventually get made fun of, but I wasn't really prepared for it at this age. The little boy sitting next to Payton laughed and told the boy next to her that Payton couldn't write. Ofcourse they started laughing and making fun of her and Payton really doesn't 'get' that they are laughing at her. So, she joins in the laughter. (and I might add - her laughter is full of so much joy, I love it). However, while she was laughing and clueless that the laughter was at her expense, my heart was breaking. I know all kids get made fun of but it just feels different because she doesn't 'get' it. I'm not ready for this yet. We notice kids staring at her more (I will be the first to admit that she doesn't understand how to play with the kids and does have some quirky behavior......but I so wish they wouldn't stare and give her weird looks).
Whew - we are so not ready for this.

*************Just got a call from the school nurse. Payton's got a headache, blood pressure is 130/80. Why does this instantly make me tired and sad? I so want her to feel good.

Lost

You know, we've been at this for nearly six years with Payton, and Bob and I still feel absolutely lost sometimes. The doc increased the most recent medicine again and we think we are seeing some improvement. We do have to take her in for blood work this week some time....but other than that, I am hopefuly this week will be better for her. I can't really think of the last time Payton has felt at her best. Her blood pressure has been on a wild ride lately and it's taken her father and I with it. It's so emotional when your child doesn't feel well and there's not a darn thing you can do about it.

We've been venturing out to ballgames, a place called Kangaroo Gym (where kids can bounce like crazy), etc. and Bob and I are becoming more and more fearful Payton is not going to 'outgrow' the emotions that go along with taking her places that may be more loud or active than what she is used to. She really does want to go to these places, but once there for a bit she really does just lose it and spends a lot of her time crying (or screaming and crying, I should say). At kangaroo gym she discovered the bathroom sink and spent a good thirty minutes continually washing her hands. It was irritating to me - after all - there were tons of kids there having a ball and she should've been doing the same thing. But, again, I've got to remind myself that what makes the other kids happy won't necessarily make her happy.

And, ofcourse, the greatest part of it all was that Payton crashed her first birthday party. At the gym, there was a child having a birthday party and Payton managed to make herself well known to those attending. She talked to all of them and then proceeded to tell them she was very hungry - wouldn't you know it - she ended up with a piece of spiderman cake. A tad embarassing for me, but nothing compared to the embarassment I received at the pizza place afterwards where she proceeded to ask strangers for money because she wanted to play the arcade games at the front of the restaurant. And, yes, one gentleman obliged :) On the way home Bob and I were talking about how frightening it is that Payton sees everyone just the same. No one is a stranger. So scary! She will give anyone a kiss, give anyone a hug, and talk everyone's leg off. While I'm sure she may touch several people's hearts, it scares us to death.

So, those of you with older kiddos......should her emotions be better by now at age six? She is getting stronger and stronger. It is so hard to carry out a screaming, kicking six year old....and I really get tired of the stares. I know so many of them think I need to get my child under control but they have no idea how there is just no winning with her. She just doesn't 'get it'. And Koen-he's the polar opposite. Two years old and he knows how to behave. I'm not saying we have him completely figured out - I know kids change as the grow - but he understands things. Bob and I really are afraid that when Payton is thirty years old we're still going to struggle with her understanding things and not throwing a terrible fit. (I've read stories like that on the listserve and I really don't want it to be like that for Payton). It's awful for Payton and it's exhausting emotionally and physically for Bob and I.

We took Payton to the dentist last week and she'll need to have surgery (which we figured before going in there). With her medical issues they'll have to do it in the OR, which is great with us, it makes us feel better that way. Because she's not in any pain, she doesn't have to have it right away - so we're happy about that. We see the cardiologist in a few months and with the way her blood pressure has been, I'm anxious to go to that one. I know I may not ever get any real answers, but it sure would be nice to :)

New School Year-New Quirks

The first few days with Payton went pretty well at kindergarten, but we've gone downhill every day. She still has such a hard time communicating exactly what's going on, so I usually get bits and pieces and then finally am able to put it all together. Typically when she didnt' want to go to school she would tell me she didn't want to rest (they have a 20minute rest time). I would then explain to her that everyone has to rest and to just lay down quietly until the teacher says she can get up. Well, sometime in the past five days she's told me she tries to go potty during rest time (her way of getting out of it) and the teacher says no going potty during rest time. So last night after her gazillion meltdowns she finally says something about a lullaby. It's then that I realize they are playing soft, slow music during rest time. I don't know about your kiddos - but Payton just sobs when anything like a lullaby, Jesus Loves Me, etc is played. It just makes her so darn sad. So - her way of getting away from it was to try and go potty. Today she went with her big headphones to cover her ears during rest time. Hopefully that will ease her anxiety over rest time. If not, they said they could take her to the special ed class and she could stay in the quiet room for her 20 minutes of rest time. She does make me laugh though because she says rest time is SSOOOOO long.

The other struggle with Payton lately has been leaving the house. She is terrified we will not be able to find our way back. This started around July and has been an issue ever since. When my children were babies it was hard being in a car when they would be crying....just wanting to be held or out of their carseat. Now that Payton is five.....it is exhausting listening to her scream in the car anywhere we go. I've gotten some suggestions from the listserve that I'm going to try with her, but I really did assume that when I would explain that mommy knows how to get home she would not be so anxious over it. Whew!! Anxiety is so delibitating for these kids.

Last night I was more than pleased with Payton on her new blood pressure medicine - she can now swallow a pill! It's a small pill, but so much easier than mashing it up and putting it in applesauce. And-we are seeing results.......this morning it was 105/61!!! I'm much more at ease now :)

Worry

Payton's blood pressure has been awful this past weekend, running about 133/80. I can tell just by looking at her that she doesn't feel well. Her eyes get so puffy and she just looks exhausted. I've got a call in to the doctor and the nurse asked me to have the school check her bp and see what it's running there....the school nurse called and it was 128/80. Dr. Blowey's nurse said we may do a 24 hr monitor-which I think would help get an idea what it's doing all day for her. I feel awful sending her to school (when I left she was still crying and not at all happy to be there....) but what do I do? I really don't like sending her to school when her blood pressure is that high, it makes me nervous....not that I could do anything about it, but atleast I'd be with her. Anyways, I just needed to vent a little. I know worrying doesn't do any good....but I can't help it.

UPDATE: Just heard back from Payton's doc.....adding another med (since she's maxed out on the other one), bloodwork and then we'll go from there.

Excellent Essay

This was posted on the list serve today and I thought it worth putting on my blog. I am sure we've all been questioned on why we do things the way we do and this particular mom wrote an essay to her school to answer that very question. Just yesterday I was talking to my sister about this, but this mom put it in much better words than I ever could.

To make a long story short, earlier this week a question was asked by
some nitwit official as to why there weren't more parents (of special
needs kids) involved in the local PTA and other issues that have come up
that directly involve our kids. His question, which was passed on to me
was, "Where are the parents?" I went home that night, started thinking -
and boy was I pi**ed - and banged this "little" essay out the next day
on my lunch break. By the way, I took copies of this to the school board
meeting that night, gave it to a couple of influential people and it
WILL get around...... .......

Where are the parents?

They are on the phone to doctors and hospitals and fighting with
insurance companies, wading through the red tape in order that their
child's medical needs can be properly addressed. They are buried under a
mountain of paperwork and medical bills, trying to make sense of a
system that seems designed to confuse and intimidate all but the very
savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift
their 100 lb. daughter onto the toilet. They are spending an hour at
each meal to feed a child who cannot chew, or laboriously and carefully
feeding their child through a g-tube. They are administering
medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency
rooms, waiting for tests results to come back and wondering, "Is this
the time when my child doesn't pull through?" They are sitting patiently
in hospital rooms as their child recovers from yet another surgery to
lengthen hamstrings or straighten backs or repair a faulty internal
organ. They are waiting in long lines in county clinics because no
insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2
or 3 hours a night, and must constantly be watched, lest he do himself,
or another member of the family, harm. They are sitting at home with
their child because family and friends are either too intimidated or too
unwilling to help with child care and the state agencies that are
designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they
try to make up for the extra time and effort that is critical to keeping
their disabled child alive. They are struggling to keep a marriage
together, because adversity does not always bring you closer. They are
working 2 and sometime 3 jobs in order to keep up with the extra
expenses. And sometimes they are a single parent struggling to do it all
by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything. They are trying
to patch their broken dreams together so that they might have some sort
of normal life for their children and their families.

They are busy, trying to survive!