Here's to another first!

Last night I watched Payton walk down our stairs holding on to the handrail. She always scoots down on her bottom, has us carry her, or has to hold someone's hand. I couldn't believe it! I know it's all visual-spatial (we actually got tickled at her when we pushed her in the swing on the new swing set because a wood panel was sticking out wayyyyy above her head and she kept yelling that she didn't want to hit her head - it wasn't even close to her....another sign of the visual spatial deficiencies that affect most ws kiddos), but seeing her walk down the stairs by herself made me see that she will work thru the deficiency at her own pace - I know not all of them, but some of them.
After I watched her so delicately hit each step and slowly make it down the stairs and turn the corner, I ran down after her to go find Bob and tell him what she'd just done. YAY Payton :)

Payton Goes to Preschool Book

Payton's teachers at school made her a book to help her learn about her routine at school and also so she can see pictures of herself having fun at school (so she won't obsess and worry about it at home). Payton LOVES this book. And, I do think it's going to help her. It's nice because it goes through each step of her day: Mrs. Miller tells Payton "Hello!", Payton puts her backpack away, Payton washes her hands, Payton finds out her important job of the day, They have playtime, etc. It's so nice - and it looks like it took quite a bit of time for them to do it.

Today was school picture day. By the time I had left her class, she'd already gotten in trouble three times because she wouldn't leave the teacher's camera alone. (I didn't realize she was carrying the teacher's camera until the aide told me....don't ask me how Payton got ahold of it - I still call her go-go gadget arms because she manages to reach everything). I'm hoping it's not a rough day for her because I know her well enough to know that she's going to obsess about that silly camera all day. The good thing about this is, maybe she'll get a good picture taken of her! Then, on Friday I take her and Koen for their 5yr/18 month pics. Hopefully they both cooperate :)

I just thought I'd show you the book the teachers worked on for Payton so if any of the younger kids struggle getting into the routine of preschool it may give an idea that will work for them.

Then and Now

Our weekend was great. We didn't do anything spectacular - which is always my idea of a good weekend :) I love being at home and just watching the kids play. It is obvious to me that Payton has adjusted to preschool and is doing much better emotional-wise. She still complains of her stomach hurting when we get there (or anytime she talks about it) but I do believe she generally enjoys being with all the other children. Because she has adjusted, it's easier for me to notice the changes in her since she has been on anxiety medication.

THEN: If we went somewhere (restaurant, ballgame, car, etc) and it was too loud, she would scream, kick, bite, etc. without giving any type of notice that noises were even bothering her.
NOW: She tells us it's too loud. She asks to leave or says "we get outta here". She doesn't scream or cry anymore. Sure, she may whimper and that's my que, but it's not nearly the fits she would previously throw.

THEN: Payton wouldn't obey - hardly ever.

NOW: She actually tries to listen and obey. Don't get me wrong, the impulsiveness is still there.....I get tickled at her because she knows when she is not supposed to do something and she'll say "but I have to". She's still impulsive but since the meltdowns aren't there, it's easier to handle.

THEN: Payton was more to herself, didn't really pay attention to anyone around her. I think she was completely focused on what was coming up next.

NOW: Payton acknowledges EVERYONE! My favorite question from her is "What's that?". She says this while pointing at someone. So, what she is really meaning is "Who's that?"....she just asks it in a different way :) Everyone gets a "Hi!" from her. There's actually been two times now that we've been in our driveway and older kids have rode their bicycles by and said "Hi Payton" and I had no idea who they were. She is obviously making herself known.

THEN: Payton couldn't sit thru church. She wouldn't even try covering her ears, she would just meltdown and we'd leave about five minutes into it.

NOW: Payton does well. She doesn't make it thru the whole service, but she puts her fingers in her ear when it gets loud. She even made it through the choir singing, which in the past has been awful for her. This past Sunday she yelled "GREAT JOB!" after they were finished. And, during prayer, I heard her singing the hymn we had just finished singing. Beautiful.

As you can see, she's doing quite well. I do believe she could talk 24/7 withouth pausing to take a breath. She has shown me that she will not know a stranger and will walk up to anyone and everyone and ask them what their name is. I'm loving her contagious happiness.

And, on to Koen. He's not my baby anymore(as you can see from his picture). He went to his 18 month appointment today. He weighed a big ole 23 lbs and is my happy little camper as usual. He's got such a wonderful personality and giggles just like the mouse "Gus" on Cinderella (the little chunky mouse). He's got about 8 teeth in now and just seeing his smile makes me melt. He's now starting to talk (saying cheese when it's time to smile for the camera, he says "shoe", etc) and most importantly he understands so much of what we say! I remember when Payton was three wondering when in the world she was going to start understanding what I was saying. I feel blessed to experience this with Koen. Don't get me wrong, Payton is a blessing. She has changed us for the better - but to see Koen doing things so quickly is like a miracle. I really do not know what I would do without my children.

A first!

Driving home in my car yesterday, I had a cd in that I hadn't listened to in quite some time. I'd picked the kids up, so the volume was down fairly low but you could still hear the music. When it got to the chorus, I all of a sudden heard this voice in the backseat singing along with the cd. She's never done this before! I almost started crying. Now, we all know how our kiddos have the scratchy, deep voices....so I'll admit it wasn't the most gorgeous singing like Gloria Lenhoff (ws) hehehhe, but it was beautiful. I know this doesn't seem like a big deal, but I always loved it when my nieces and nephews would start singing with the radio (Laney, who just turned three, loves singing all of the High School Musical songs and totally cracks me up when she does). So when I heard Payton sing "Nothing's gonna change my world" I couldn't believe it.

Social Bug

This past week I've realized what a social bug Payton is. She's always been talkative, but now she really goes full force. Yesterday she had an appointment with the ENT. On the way down, she continued to roll down her window, wave at passing cars and yell "HI!" at the top of her lungs. I loved it! We left a little early for the doctor's appointment because Payton was so excited to go (this still shocks me) because she couldn't wait to play with their toys and read their books (actually, I think she just wanted to go visit with everyone in the waiting room). As usual, we went to Braum's and got her some sherbert beforehand to waste some time so we wouldn't get to the office way too early. She was full of hi's and hello's and what's your name? to everyone - some people spoke back, some smiled, and some just kinda looked at her. I really do wish I had Payton's personality! As we were eating, a man came from outside and when he was about three tables away she started yelling "Swiper no swiping! Swiper no Swiping! Swiper NOOOOO Swiping!". Obviously we've watched way too much Dora. I'm sure the guy had no idea what she was saying or why in the world she was yelling at him but I was about to roll on the floor laughing.

Next it was off to the ENT. She worked the waiting room like she usually does - greeting everyone and finding out everyone's names and then they called us back. With the help of my hand and the nurse's she stood on the scale (very cautiously), we got her weight and off we went to the room. The nurse asked if she could take Payton's temperature in her ear and Payton said "SURE!", so that was a piece of cake. Payton asked what her name was and she said "Desiree". Payton responded with "Hi Desiree!" and the nurse just talked and talked with her. As the nurse was leaving Payton yelled "Bye Desiree!" and the nurse smiled and stuck her head back in the door and said "you know, she is one of our favorites". Ahh, even though they probably say that to all of their patient's moms it still made my heart melt.

When Dr. Walker walked in she couldn't believe how tall Payton had gotten. Payton immediately started asking Dr. Walker what she was doing, what she had and started trying to grab all of her equipment. Dr. Walker laughed and said "my, someone has gotten bolder!" She couldn't believe it was the same Payton she saw six months ago - how well she was talking, how much she'd grown, etc. Her tubes were still in (one ear she couldn't see for sure because of the blood and wax but she was pretty sure it was still in there). She's always called Payton the Queen of the Bloody Ears. I've always guessed it's because she loves to stick things in them (and in her nose!). But, her ears looked great :)

Once again on the way home she rolled her window down to wave and yell hi to everyone as we passed. I love seeing Payton this way - happy. And I think she even made some other people happy because they sure did smile when she waved as we passed.

Spa Time

Since Payton was born there's been someone I've forgotten......me. Just like every other mom in the world, I forget to take time for myself. Last month for my birthday, Bob got me and my mom a trip to the spa for a massage, facial, manicure and shampoo/style. Today was the day and I wasn't sure I was going to be able to drive home afterwards! I felt rejuvenated and ready to go. They told my mom she had years of knots in her back they needed to work out. hehehe. I thoroughly enjoyed the time with my mom. I actually wish my sisters could've gone with us. The last time all four of us got together was when I first found out I was pregnant with Payton. Looking at it now, it's kinda sad we don't make the time to do that more often. Life gets busy, kids are involved in activities, etc - it's just tough. But, it was more than nice to be able to spend time with my mom (usually it's spent taking Payton to the doctor or something and that was not the case this time!). Today did open my eyes to how taking care of myself really helps me take care of my family as well. Why do mom's feel guilty doing that???? (I always give myself a guilt trip!)

Payton's still doing fantastic. This evening we took her to a suprise birthday party for one of my friends. We usually are very 'choosy' on parties that we attend because we know what Payton does to people's homes (hehehehe). The party was at my friend's parents house and Bob and I are crazy about them. Payton did her usual 'find the games/boxes and empty them all out' and took every toy off the shelf down and pretty much destroyed the playroom while the other kids all played together. But - she had a ball and we just picked it all up before we left. She was full of "what's your name?" to everyone and could not wait to yell "SUPRISE" when she walked in the door. I love seeing her this way - she's happy and settled. I can handle the hyperactivity, the going nonstop with no direction, etc the hardest part for me is the anxiety and meltdowns and the past few days she seems to have settled in and is not experiencing it nearly as much. I was questioning whether the medication was working any longer, but now I realize it's still working she was just needing to adjust to going to preschool. She still tells me she doesn't like preschool, but she's sleeping better, so I feel better about it.

Koen.....he inspires me. He loved watching the 'big' kids play tonight and even tried to get in there and join them. He acted like he owned the place and wouldn't slow down enough to eat a single bite - I loved it! He really thinks he's a big boy and oddly enough he is capable of being worn down and goes to sleep quickly at night and requires sleep! (I don't know why I find this amazing, but after having Payton I really thought every child must not require much sleep) :) He still amazes me at every turn - I feel like I'm witnessing a miracle every second of the day.

Two weeks

Well, Payton's been in school about two weeks now and after last night, I would say she is beginning to adjust! She talked pretty much from the second I picked her up til close to midnight. From 9:00pm on she was in bed, but she was still talking. Finally I told her she could look at books and talk all she wanted, but I was going to go to sleep. I'm usually not comfortable doing that with her because I fear she will just take off and leave to wander around (or run in Koen's room and wake him up) but I was ready to crash. She must've talked herself to sleep because when I woke up in the middle of the night she was sound asleep.

I keep trying to ask her different questions to see if she's made any friends while at school but so far the only child's name she mentions is Tarin. Then, she ofcourse names her teachers as her friends. So when I was talking to her about it yesterday I said "So, the teachers are your friends too?" Her response....."No, their SNAKES!" I have no idea where that came from or why in the world she would call them snakes, but she did :)

I get tickled at Payton because she can give me bits of things that happened throughout the day, but I really have to try and put the pieces together to figure out what may have happened. I say 'may' have happened because a lot of times she just makes things up (for instance, last night she told me her daddy pushed her off of her bike......and I know that didn't happen :). I've also found that if I ask the same question ten times, but use different wording, I might finally end up with an answer. She told me that Shawna (her aide) told her "No!" and that it hurt her ears and she cried (cried like a baby is what she told me :). After about ten to fifteen minutes I finally came to the conclusion that she was coloring on the floor. NOT a suprise to me at all! I reminded her again that we are only supposed to write on the paper - but one reason we do not keep pens, crayons, etc anywhere within her reach is because even though she knows better she will still grab them and write on everything.....walls, furniture, floor, etc. I do wonder when she will start using these things appropriately. She works on using crayons and pencils (holding them correctly) but she really has no interest whatsoever in drawing. I also wonder about scissors - her hands still seem awkward when trying to use them. They work a lot with her on it in OT, but something that seems so easy really is difficult for her hands to figure out. She'll get it figured out though, I expect it to be quite a while before she does well with or can even use scissors.

The only 'not so happy' thing yesterday was we discovered Payton is prolapsing again. It's only been a year since they fixed it last time......and I'm guessing low muscle tone is really the cause of it all. For now, we're just going to do fiber fiber fiber and just kind of wait and see before we call the specialist. She's had a lot going on the past month or so, so maybe we can kind of take care of this on our own.

Anyways, just had to share my news that Payton is getting back to herself - sleep is not there yet, but she'll get there shortly I would say. Too bad school doesn't 'exhaust' her :)

What's going on?

I'm finding myself in a strange sort of funk lately. I think my bubble has been burst. I naturally assumed that as Payton got older, things would get easier. She is able to communicate, she can go where she needs to go, etc. and we are past the days of nonstop crying. While we were in the phase of continual crying (or screaming), I really didn't think it could get any harder. And honestly, it's not that I would trade one for the other.......both hurts. But as Payton is getting older, it seems like it's getting tougher - I guess it's just a different kind of 'tough'.

She's been up since 3am. Generally telling me that her stomach hurts. "Take care of me", "Pray to God to make it all better", "I'm sick, I can't go to school", etc etc etc. I know it's anxiety and that this is generally what the future is going to hold.....atleast everything I read says it is. Payton just kind of seems stuck - she doesn't want to go anywhere....grandma's, church, school, Dawn's, etc. Thankfully, Noel reassured me that it is Payton's way of keeping her routine. If she's at home, she's almost in control of things. It's her normal routine. I knew these kiddos liked their routines, but I had no idea they were this rigid.

Yesterday I went and picked Payton up from preschool. I walked in the door and the students were all sitting on the floor listening to the teacher read a book. Well, all but one student. Payton. Payton was standing up, with her back to the teacher, spacing off to the wall and picking at her scabs from the blister bug. It's hard for me to see my daughter that way. I mean, I really envisioned her being the one listening intently to the story being told, but it's actually quite the opposite. I know as she gets older she'll tune in more, but for now, she really seems oblivious to everything around her.

On Sunday during the church service, Payton made it thru a lot of it. She covered her ears and was fidgety, biting her nails, and quite anxious, but she did it. We've never made it through the entire service with her, but I'm pleased to see her make it for about 30 minutes (even though she still talks quite loudly thru a lot of it :) Again, it was disheartening to see the blank stare on her face. During the 'greet' time, people would come up to shake her hand. She would shake their hand, but it was like she was looking right thru them. You look in her eyes and it seems there's nothing there. Ofcourse during the service, the preacher said something about how trials can make you bitter or better. And when you hear that, you do think to yourself - okay, how have we handled this. I don't feel bitter. I'm not angry about this, I'm sad. It's the kind of sadness that I wouldn't wish on anyone or want anyone else to feel. The depth of sadness that I wish I'd never known. Sadness that hurts so bad, sometimes I want to run as fast and as far as I can and just throw myself on the ground in tears.

I guess it's a feeling you can't really explain. I feel guilty for feeling it. Payton is Payton, why would I want to change that? I want to see that life in her. I want to see that 'light' in her eyes. Not the empty, gazed look. Part of struggling may be because of everything I see in Koen. Before him, I really had nothing to compare it to. But, Koen. Oh my goodness. Watching him run down the driveway is enough to bring Bob and I to tears. Maybe part of it is because I now see him and am beginning to mourn everything all over again. I don't really know. I guess it's a process - a long process.

This morning when I took Payton to school she did very well. Maybe she was groggy since she'd been up since 3am (haha). Tarin (she's three years old and basically takes care of Payton) met us at the door and she and Payton walked off holding hands to go put Payton's backpack in her cubby. Bob picked them up from preschool today....here's their pic. I hope there are a lot of "Tarin's" that cross Payton's path.

Kangaroooooo

Yesterday was my niece's birthday, so she had a little party at Kangaroo Gym. We'd never been there before, but the kids had a great time. Koen totally cracked me up because there was one little jumping slide he was trying to get on and a little girl probably around his age kept pushing him back down. Being the easy going little guy Koen is he just let her push him and I ended up just taking him a different route. About five minutes later, we happened upon this same little girl and Koen ran up to her and smacked her across the face. I could not believe it! My sister and I both gasped and ofcourse apologized to the other little girl's mom and scolded Koen, but more than anything, I was thinking....watch out Payton because he's ready to fight back now! :)
Here's some pics of the kids

Payton and Carlee going down the slide:

You know, Payton couldn't do the things the other kids were doing (climbing up the slides by herself, etc -there were some she could, but not many)....but she had fun. As long as someone was holding her going down the slides, she did great! She really did have a fantastic time.....and did not want to leave :) Now, Koen, he LOVED going down the slides -preferrably by himself and most enjoyed going down on his stomach, backwards. Needless to say, I think we'll be making a trip back there soon.

Laney Gracie

This weekend is my niece's 3rd birthday - she was actually born on her parent's anniversary :) Laney was the first baby born in our family after we received Payton's diagnosis and I still feel guilty about how 'stand-offish' I was when she was born. Thankfully I'm blessed with a sister who is very caring and compassionate and holds no grudges at all. Payton and Laney are two peas in a pod.....I actually credit Laney for many of the things Payton does. Payton's picked up many of Laney's phrases, such as "what did you say?" with her face all squished up....and they pretty much follow each other around all over the place (and can also beat the fire out of each other if in the right mood!). I really can't tell you how thrilled I am that Payton has a cousin so close to her in age that lives close to us. It kind of gives me a 'security blanket' knowing that someone will be there at school to help Payton out if someone is giving her a hard time. I love you, Laney, and hope you have a great 3rd birthday!

Lovin the Teacher

Last night, Mrs. Miller called us to check on Payton. Wow- what a good impression that made! Neither of us expected that at all and we were totally shocked and thrilled. It's going to be a work in process, but needless to say she was just fine with going to preschool today since it was raining and they couldn't go outside :) The day seems a bit brighter when you know you've got a good team trying to make it go smoothly for her.

Whistle

I've heard so much about this darn whistle that I think my head is going to spin like the lady on the movie "The Exorcist". Geez! It was all just bad timing. They brought Payton back from therapy and took her outside about the exact same time Mrs. Miller was blowing the whistle for kids to come back inside. That was yesterday - so, really, there's not been a break from the whistle. Last night Bob and Payton ran into Mrs. Miller at Walmart. I ask Bob if Payton said anything to Mrs. Miller and he said "oh, yeah.......'where's your whistle?'" I just looked at him and laughed. In all seriousness I was not a bit suprised that she asked about it - it has been a topic of conversation at our house every second of every day at our house now. She's was up til 11:00pm worrying about it yesterday and has been up since 4:30am worrying about it this morning. I feel sorry for her because of her constant tummy aches and inability to sleep because of it, but I really don't know what more to say. So, this morning, off we go to school again. She's in the back seat telling me she doesn't want to go to school, she doesn't like it, her tummy hurts. Is it strange not to get emotional anymore? I feel like we've been doing the school thing since she's been diagnosed - okay, not really the school thing - but therapies. I almost feel numb anymore - and sad that something as small as a whistle has taken all the fun out of preschool for her.

Once we go inside her classroom, I ask Mrs. Miller if she is doing okay during the day. Mrs. Miller said "yes, actually, she's doing very well. we're not having any problems". I told her that was great, but I was just concerned because Payton is complaining of her tummy hurting a lot and that she doesn't want to come to school. She said it's going smooth at school and then up walks Payton to Mrs. Miller. She said "We go outside today?" and Mrs. Miller said "No, we can't today because it's raining". Well, knowing how Payton thinks, I knew she didn't ask that question because she wanted to go outside, she asked because she didn't want to hear the whistle (it's only blown when it's time to come in from playing outside). So, I left knowing that today Payton would not have to deal with the whistle.....althought still feeling like I hadn't gotten my point across that she is struggling with the whistle and can't quite get past it.

Three hours later, Bob goes to pick up Payton from preschool. The teacher explained to Bob that Payton was having trouble understanding why they couldn't go outside today because of the rain (basically Payton asked 10,000 times if they were going outside today). The assistant teacher happened to walk by as Mrs. Miller was telling Bob this (her name is Miss Christy and she taught Payton at the learning center when she went there) and she told Mrs. Miller "well, no, actually, she was concerned about the whistle and was just repeatedly asking about going outside because she didn't want to hear the whistle". SHE GOT IT!!! That's exactly right! So, there is hope. I know this little bump will be worked out, but it's hard seeing Payton so stressed out and obsessed over the whistle. Poor thing she's so stressed out for a little four year old :(

And the most amazing part of all - yes, she is mentally retarded....but in her own smart little way she knew if they didn't go outside, she would not have to hear that whistle. The only part I hate about it is that she couldn't take the first 'no, we can't go outside because it's raining' and be calm the rest of the day knowing they weren't going out. Instead, she was still anxious over it and had to repeatedly ask. Oh, Payton, how I pray your little insides can just be calm for a while and not get so anxious.

Home?

Well, we're officially in our new house. It ofcourse doesn't feel like home yet, but it won't take long. My poor daughter is having an awful time adjusting, but I know in a couple of weeks she should be doing just fine. Friday morning I had planned on having the morning to get some things packed and cleaned up (she would be at preschool), but she woke up with blisters on her arm and back. It honestly looked like she'd been burned but I told Bob I would've known if she'd got burned because she would've screamed in pain and never did. Turns out, she'd been bitten by a blister bug. I've heard of these bugs before, but had no idea they really do cause blisters! We didn't have to take her to the doctor or anything (although she was requesting to go) but they really have annoyed her and basically set her off from the moment she woke up. So, Friday was an exhausting day for her and I. (Actually it was at the point I was questioning whether I was going to make it through the day :)

Saturday we couldn't have asked for the move to go any smoother. We had everything loaded in the trailers and trucks by 8:30am and my sisters and I worked on cleaning. I think by 2pm both parties had gotten moved into each other's homes and we were set. I had my mom bring Payton in around noon or so, but within a couple of hours she was already WAY overstimulated, so Bob just took her up to our room and spent some one-on-one quiet time with her until she was able to calm down. It helped, but she really has been emotional all weekend.

Koen seems to be enjoying the new house, digging everything out of cabinets and inspecting everything - like I would expect him to :) He's just gotta make sure he knows where everything is! I already feel like a big load is lifted off my shoulders. The house is smaller, the yard is smaller, no pool to clean, etc. I just feel 'lighter'. It's funny how you look at things......I needed things to be more simple because I have a daughter who requires so much of our time (and strength). I'd give up everything I own to see my daughter not have to walk this road. I really do hate what williams syndrome does to their bodies. I've listened to my daughter complain of nonstop tummy aches (it's nerves), wake up in the night shaking with her fingers in her ears because she's dreaming of a noise that's not even occurring at the time, and then this weekend I watched her run up to a car that had stopped to welcome us to the neighborhood and she tried to get in the driver's side door and the passenger side door. Ugh, teaching stranger anxiety is tough. I took Payton to preschool this morning after her long weekend away from it. She was still talking about the whistle, saying her tummy hurt, and she wanted to go home. Isn't it funny, I really think part of us thought when we moved to a new house things would be different (okay, not really, but we can dream, right?). I really really really just want her to be happy.