Tuesday, October 28, 2008

Awe and improvement

I handed you a chicken nugget in the car yesterday, Koen, and I sat in amazement as you were able to chew it, swallow it, and eat it right up. 18 months and you are already doing that! Yes, you've done that for quite some time, but I'm still in awe that I can actually hand you a Happy Meal and turn around and drive without fear that you will choke and gag on it. Payton was past three years old before I felt comfortable turning my back on her with food. Who knew this came so naturally to kiddos! Do you know what else amazes me? You understand the things that I say!! I point, you follow my finger and immediately know what I'm talking about. I didn't have to teach you and work with you on how to learn this, it just came naturally! I am in awe. I told your grandmother that I seriously think you are Einstein :)

This weekend the kids had the stomach flu. Payton had it on Friday night and then Koen ended up with it on Sunday. Thankfully it seemed to be a light case and only lasted about 12 hours - if even that. YAY! Other than that, our weekend went really well. I've been trying to fight back all the emotions with Payton lately. Seriously, life could be so so so much worse. It is so tough to see your child struggle though. Payton's stuttering seems to be getting worse. We try not to finish her sentences and just wait for her to try and complete her thought, but it can sometimes take minutes for her to say what she's trying to say. Her speech therapist is supposed to be getting back with me on what they are doing to work on it. It doesn't seem to bother her at all that she can't complete her thought, but I struggle with it. And I'm not even sure I should venture in the area of her behavior. The post would be forever and a day. Payton truly does know what is right and wrong, she is just so darn impulsive! I left the room for two seconds the other day just to take laundry to the laundry room - not start the washer, just take the laundry in there. Ofcourse when I left the room I told her to be nice to Koen and I would be right back. I hurried thinking she may attack Koen, but instead I came back to find a lot of missing keys from my laptop - she had decided to take them off. How she did it so quickly, I have no idea. Then on to the prolapse. I know the prolapse bothers her - I think it constantly makes her feel like she needs to go to the bathroom. So, now when she goes to the bathroom she tries to pull the prolapse out herself or poop in her hand. Mix this with frequently wetting her pants (or forgetting to pull down her pants when she goes to use the potty) and I feel like I'm in a tornado. I have to remind myself that yes, she is nearly five, but developmentally she's more like three - so I should expect this behavior. It's just exhausting, I guess. I told my mom the other day that the gap is getting bigger and after seeing my niece (who is three) sliding past her, it's just hard. Probably the hardest part for Bob and I is Payton's behavior. We almost feel like we've failed because she truly cannot control herself.......

I don't want this to be a whole vent session - because I am hearing and seeing improvements with Payton. Her teacher said she heard Payton walk up to a group of other children the other day and ask if she could play with them. I thought that was fantastic! She has also been taking major interest in the piano lately. Oddly enough it used to kill her ears - now she seems to want to play on it nonstop - and sing along while she plays. I'm loving this! And, last night she was alseep by nine. Now THAT is a blessing!

This morning I took you and your friend, Tarin, to preschool, Payton. As we pulled out of the driveway you turned around and looked at Tarin and said "Let's say bad words!" and then you just giggled! My stomach immediately dropped and I thought 'oh my word, what are you going to say'. As I was getting ready to tell you no, you said "POOOOOOP" and you both just laughed your heads off. Giggling with your friends. It really can't get any better than that, Payton :)

Thursday, October 23, 2008

Parent Teacher Conference

I recently had Koen and Payton's pictures taken - Koen was turning 18 months and Payton is about to turn five, so I just took them both and had them done. Things have been going so well with Payton and I really wanted to capture this moment. As I know you all understand, it is very hard to look at past pictures - the feelings, exhaustion, heartache, etc all come back to the surface. Our family is now at the point where things are getting easier and I wanted to capture the moment, knowing I could look at these pictures and have good memories of it. We were just thrilled with the way they turned out. I told the photographer that my kids have completely different personalities and she managed to capture both - I love it :)

Today was Payton's parent teacher conference. It went okay - but she does have a major problem focusing (already knew that but it hurts hearing someone else say it). I saw some pictures of things she tried to draw - for instance they asked her to draw a picture of herself. It was just a scribbled line and that's hard to see, but atleast I know she's going thru the process of learning how to do it. I guess I should be thankful she is putting the pencil to paper and atleast trying to do what they are asking of her. Her teacher has read the ws book I gave her (which is amazing to me - I have such respect for her) and is working very hard with Payton. I really appreciate that because I know preschool will set up such a foundation for Payton - I'm glad this year she's been blessed with such a great teacher.

Monday, October 20, 2008

KC get together

We had such a great time on Sunday. For those of you who live on the east coast and get to see Noel's family when they go to CHOP, you are in for quite a treat. Abi is so full of hugs and I love you's - I really just can't get enough of her. The kids had such a great time at the gym. They open their doors one Sunday a month for special needs kids and it was so neat seeing all of the kids running around having a great time.

It had been a couple of years since I had seen Matan. I could not believe how much he had changed - he is such a doll! The last time I saw him, his hair was full of curls, just like Payton's, but now he's got the shorter hair and looks like such a little man!

Here's the group:

Once we got done at the gym, we went to Cabela's with Noel's family. Wouldn't you know as soon as we walked out of the gym, Payton climbed into Noel's van and made herself at home. So, she got to ride over to the store with them. I can only imagine how much fun they had in that van with Payton and Abi both. They had a great time looking at all the big fish (and turtles) in the fish tank - and then all the other huge animals. The day really couldn't have gone any better. I'm so thankful all of us can get together and live just a short distance from each other. It really helps out in the tough times.

Payton's sleep has still been really wacko (and nearly non-existent). Should I just assume this is part of ws? I'm guessing it is - but I just can't fathom how a four year old can thrive on such little sleep. We give her 3 mg of melatonin at night (and then if she's gone a long time without even acting sleepy, we give her some more), but I'm just suprised that she's not a bit sleepy after 3 mg. I haven't taken any melatonin, and I'm tired :)

******Please keep my Aunt Sue in your prayers. She recently had back surgery and has been in severe pain. She ended up getting shingles on top of trying to heal from the surgery so she has been put in the nursing home for about a month so she can heal (her husband is unable to take care of her because he has dementia). We're praying she can heal quickly and get some relief on the awful pain she's in.

Saturday, October 18, 2008

Go To Sleep......

Time we gave Payton her Melatonin: 8:30PM
Time we gave Payton her second dose of Melatonin: 2:00AM
Time Payton FINALLY went to sleep: 2:30AM

Well, it's not unusual at all for Payton to get up for the day at 2:00am-3:00am.....but to not go to sleep until 2:30 in the morning, very very very unusual. And-I pray it stays that way!!!

Wednesday, October 15, 2008

School Pic

I was really pleased with Payton's pic this year. Bob just looked at me when he saw it and said "Man, she's growing up". And, she is - which is a good thing! Every day it becomes more and more apparent to me how social she is becoming. For instance:
Yesterday we went to my niece's volleyball game and I had told Payton we were going that morning so she would halfway know her routine for the day. Her response: "Everybody say Hi to me?" She couldn't wait to go and see people and talk their legs off.
My sister had taken Payton thru the McDonald's drive-thru the other day and she was laughing saying she could not believe Payton. Evidently when they were getting their food, Payton had rolled down her window and basically was nearly kissing the poor person at the window....yelled "HI!!!!!" and "THANKS!!!!" right in her face. She's just a little chatter box. :)
Then lastly, my mom and I had stopped at the mall to get Payton some shoes after we had the kids picture taken. Had I been by myself I would not have gone to the mall because of what Payton seems to do when we go there. We carried Payton out kicking and screaming because she wanted to stay and work with the sales lady. OK.....what? It is unfortunately not unusual at all for her to throw a fit like that at places, but because she wants to stay and work? That had not yet happened. I couldn't believe it.......

This morning I took her to preschool and I think I am daily shocked at her inability to focus. At this point, I am again thankful that we have a diagnosis with Payton because I can't imagine how I would be feeling about everything - knowing that Payton was struggling and that something was just 'different'. But - I know why.....now it's just trying to work on it. It's tough, though. I feel bad telling her fifty times a day to "focus", but unless repeatedly reminded she just can't concentrate. I think I told her ten times before I left preschool to focus and put up her backpack, but every step she took, something sidetracked her (when I left to go to work she still hadn't put up her backpack). I'm sure before long she will start telling me to focus - I've noticed recently she's told me and our cat to "just relax" or "be patient". I was proud of her for saying those words and using them - I just wish she could put them into practice :)

Monday, October 13, 2008

Lumps, Bumps, and more

Last weekend we attended our first wedding together as a family. Sad, I know, considering that Payton is almost five years old. But - what's the point in taking her? All she's going to do is run like crazy and wander wander wander :) Because it was family we were there at the church for quite some time, then tried going to the reception. Let's just say by the end of the day I literally felt like I'd ran a marathon. I didn't say much about it afterwards because I think I was still in shock over how fast my child can take off without any one noticing. I really don't know how many times I felt like I had lost her and then finally came upon her. (At one point someone was vacuuming part of the church and I knew if I followed the sounds of the vacuum I would eventually find Payton in the same spot, fingers in her ear, watching ever so intently the gentleman vaccuuming). I guess I should be thankful for those noises - even though Payton doesn't like them she becomes quite obsessed with them and the sound of them usually leads me to my daughter :) I'm not really even going to mention much about the gentleman she walked in on as he was going to the bathroom. I'm sure that guy was just tickled pink over that :(

After the wedding, Payton cried most of the way home complaining of her legs hurting. After rubbing them I noticed she had two or three lumps in her leg. Because Payton still does not communicate to me the best, I thought I should go ahead and take her to the doctor. Bless her heart, she may tell me her legs hurt - but in all honesty, it could be her head hurting. They did an xray of her leg on Friday, and all is well. It is just a fatty tumor.

On to Koen, he is my child who always has a hug knot on his head. He took a major fall in the driveway (he was trying to go much faster than his little feet could keep up with) and crashed head first. He actually was pretty good about it - once he got his pacifier, he was good to go. I told Bob I was actually thankful when I saw these bumps and bruises on him because at this point, Payton wasn't even walking yet - so it's good to see these on him - it means he's being a regular old little boy!

Preschool is still going well. We haven't had an IEP meeting yet, but I'm still just sitting back and relaxing on it. I feel like all we've done with Payton is work, work, work. I want her to have fun - be a kid. It seems she's really trying to enjoy life (this medicine has truly worked wonders for her) and right now, I'm just trying to enjoy it. We can work after I can soak all of her joy in :)

This weekend: Williams Syndrome get together. Can't wait.

Monday, October 6, 2008

Wednesday, October 1, 2008


I know a lot of kids go thru a phase of stuttering and most of them stop almost as quickly as it started but I was suprised when Payton started doing this. I really think her mouth is trying to move faster than her brain (this happens to me!), so she will say "I-I-I-I-I-....." for about 30 seconds or a minute until she can complete her sentence. I didn't say anything to anyone about it at first cause I didn't know if she was actually stuttering or if I was the only one noticing it. Sure enough, my dad said something about it and then my sitter said something to me about it yesterday. She was worried about her because she talks so smoothly all the time and now all of a sudden she can't get a sentence out. However, it's not all the time. Just part of the time. I don't know if I need to talk to her speech therapist about this or if it's just a phase that will work itself out as time goes on. She doesn't seem frustrated at all about it and in my opinion, it's kind of cute :) (although I realize to others it may get kind of frustrating).