Thursday, January 31, 2008

Yesterday Evening...

I'm not sure why, but sitting in her high chair or sitting in her car seat is something Payton seems to enjoy when she is having a rough day. I don't know if it's the sensory input of the chair holding her and being strapped in or what, but it really helps calm her down. So, this is where she spent a lot of her time last the car seat. If we needed to go to different areas of the house Bob would just carry her in her seat and off we'd be in the other room. Don't ask me why - but it works.
And, thanks Aunt Shawna for the new rubber boots. She LOVES them and wants to wear them everyday. Shawna got them for Laney (Payton's 2 yr old cousin/best friend) and Payton to share when they are out on the farm.....I have a feeling Laney will have to fight for them!

Wednesday, January 30, 2008

Rough couple of days

We're not sure what's been up with Payton the past couple of days but she's really been having a tough time. Biting, hitting, throwing things (we've always called her our little tornado), etc. but we can't seem to pinpoint what's causing the meltdowns. In all honesty, I feel sorry for her. She just can't control herself. Everything will be seemingly just fine and she will walk up out of nowhere and either just bite you or slap you across the face - and once it starts, she doesn't stop. She knows she's not supposed to do it, because many times after she's done it she starts crying. Oddly enough, after sitting in time out or getting a swat she immediately comes back in the room and 'attacks' again. It was at the point yesterday we felt we really needed to get Koen out of the situation because the top of his head seemed to be the target for hits, thrown trains, books, etc. I sat up most of the night last night thinking how awful it is for her not to be able to communicate her feelings. At times, we've noticed she'll lash out with this behavior when she's hungry. It's frustrating that she won't just tell us she's hungry or go to the pantry and get a snack - her way of telling us is by hitting, biting, or destroying things. Unfortunately, hunger wasn't the cause the past few days and I can't put my finger on what it is (although I still feel confident it's anxiety related - just not sure what is causing the anxiety). I've never heard back from the geneticist or her pediatrician, so I'm assuming the geneticist never got with the pediatrician on a psychologist. Thankfully, Noel gave me the name of Abi's developmental pediatrician and we are scheduled to see him in July (the nurse said they would move her up as they could....but it's worth the wait - I'm just thankful we could get into him). I've also emailed Dr. Mervis to discuss it with her. It's really tough to see her like this and not be able to 'shake' her out of it. The past two nights when trying to get her to go to sleep I've practically laid on top of her to give her that deep-pressure sensory input. She seems to need a lot of that (and I try giving her big hugs when she's on a rampage but usually I end up with teeth in my arms or shoulder...and I still wonder if that's what is causing her to bite - needing the sensory input). For now, we're just trying to do what we can to bring her out of the meltdowns (discipline for some reason is not working with these - and I'm guessing it's because it's anxiety related). Once we've tried different forms of discipline and it feels like she's really going to hurt someone (which sounds strange because she's only four!! but the look in her eyes change and gets almost frightening) we try baths, sitting her in the high chair to watch a home video (this way she can't get out and go back to the hitting, etc), or trying to take her outside if it's not too cold. Tonight I'm working on getting picture schedules together to see if that will help her as well. I feel like she's understanding things when I tell them to her, but maybe she's really not. Hopefully the picture schedules will help with this some. I'm hoping and praying Payton has a better day/evening today-I'm ready to see that big, beautiful grin back on her face!

Monday, January 28, 2008

Speech Therapy

Since the learning center here in town closed down Payton has been working with all new therapists. I've been impressed with all of them, but I absolutely love the speech therapist. She is always looking online for things about williams syndrome and reading books to try and figure out the best way to teach her. The problem we've had in the past with therapists that come to our home is that they would rather sit and chat with me about the latest happenings in their life than work with Payton. This is so not the case with Roseann (her ST). Roseann also sees Payton at Dawn's house (her sitter) and she noticed that Dawn always tries to tell Payton to "focus". Roseann was thrilled that Dawn had tried to come up with something at her house to help Payton try and focus on things and not get overwhelmed, but said for her therapy and with preschool next year they would like her to learn "Look, Listen, Think, Answer" (along with the signs that go with those words). Roseanne said she has other children and even adults she does this with and it works really well for them. She said Payton is just very impulsive and doesn't actually stop to look or listen to anything around her and if we can start teaching her this now, eventually she will be able to go thru the motions herself (and in preschool and school they will have the pictures of these actions at her desk to remind her to do these things). The thought of sending her to Kindergarten (even though it's a year off) terrifies me....especially after hearing some of your stories.

I didn't realize that children with ws had problems with the 'wh' questions. For instance, this weekend Bob's parents came to visit. On Sunday my dad asked Payton "Who came to see you yesterday?" and Payton repeatedly answered "What" or "That". Thanks, Noel, for letting me know that children with ws have trouble with these 'wh' questions. We've since been trying to figure out how to teach her how to understand these questions - so if any one has any ideas please let us know.

Wednesday, January 23, 2008

Payton's growing up...

Wow, Payton's vocabulary is just exploding. She never ceases to amaze me with what's coming out of her mouth these days. She also amazes me at what she's signing. She can sign all of her colors, sign play, game, time, sink, team, football, etc. She is just picking up signs left and right. She has trouble getting her fingers to do exactly what they should be doing - but I think it's great that she's trying and surely it's helping some with fine motor trying to get those fingers to do things. She now loves saying "Mmm...that good", "That cool!", "That my favorite" (or "That my Thomas favorite" - I guess she throws the word Thomas in the middle of it because she loves Thomas the train). And, if you ask her a question, such as "would you like carrots for a snack?" she is apt to say "Sure. Great Idea!". And, her favorite question is "What her/his name?". When we were at the doctor the other day she was asking me about everyone she saw "what her name?" I love it! I am a very shy person and usually don't say much - so I have a feeling she is going to bring me out of my shell.

I am feeling much much better today. I finally broke down and went to the doctor yesterday and it turned out I had bronchitis and an ear infection. Thank God for antibiotics.

Here's a pic of my little man....I still cannot believe this guy. When you have a child with special needs you take absolutely nothing for granted.....I am eating all of this up! Payton talking like crazy and Koen changing by leaps and bounds.

Tuesday, January 22, 2008

Weekends always go so fast....

Friday evening Bob's cousin, Jen, and her family came to see us. Payton could not wait until they got there. Jen has a daugther, Becca, who's thirteen and Payton basically sat on her lap the entire time she was here. We always enjoy it when people can see Payton in her usual environment because she is an entirely different person at home than she is at places she's not used to. She's not nearly as nervous or trying to escape the crowd....she's more herself. We had such a great visit - and Payton had such a good time she really didn't want them going to the basement to sleep. The next morning she popped up around 7:00 ran down to the basement and crawled in bed between Dwayne and Jen. I wish you all could meet Jen. She is a PT - has worked in a nursing home but now works in outpatient care and has an outstanding personality. I'd love to be a fly on the wall when Becca and all of her friends get together - I can see Jen right in the middle of it all just having a ball. Bob had built Dwayne a computer so they guys spent a majority of the time getting everything lined up on the computer so it was ready for them when they got it home.

Sunday we went to Springfield for my grandparents 59th Anniversary party. My grandparents love each other so much and give such a good testimony to us grandchildren about how wonderful marriage can be. My grandparents dated for just a short time before they got married and my grandpa insists that from the moment he laid eyes on her she was so beautiful he was NOT going to let her go. And, I know I'm partial because it's my grandmother, but she was and still is beautiful. Something tells me though, that once she caught my grandpa she wasn't gonna let him go either!

The kids seem to be mostly over their flu bug. Bob caught the stomach flu Saturday and I ended up with the head stuff the kids passed around. Yesterday Bob woke me up long enough to say "you're not going to work today" and I just said "okay" and konked back out. He came home at noon and said he couldn't believe I didn't put up more of a fight to go to work. That was the first time since I can't remember when that I've stayed home from work because I was sick - typically I just stay home when the kids are sick....and I can't explain how good it felt to get such a good day of sleep!

Our two exciting things of the weekend: Koen has taken about three steps (shocking me to pieces!) and Payton has been accident-free since Friday evening. She's had a set back on the potty training - not sure why (I'm guessing it's nerves) but she did well over the weekend!!

Wednesday, January 16, 2008

Just some pics.....

Here's Koen just hanging out.........

Here's Payton and her kitten......she is literally going to love Thomas to death.

Koen has a handful of cat hair and Payton's trying to get Thomas to stick around a little longer.

Tuesday, January 15, 2008

Ahhh, Nebulizers

Yesterday I took both kiddos to the doctor because of the regular ole cold/cough flu junk. I usually don't attempt to take both children at the same time by myself because of fear of something setting Payton off and not being able to help her calm down. My dad offered to go with me but I told him it was about time I tried to do it myself and I was really looking forward to spending the afternoon with my children - even though it was for doctor appointments.
Koen's appointment was first. The waiting room was packed and Payton made her way around the room quickly chatting with everyone. Even yelling to everyone "That's my mom!". The nurse called us back pretty quickly and Payton started saying "almost done, almost done" over and over. I reminded her the doctor was going to check Koen and she could sit on the blue chair until he was done. The doctor came in and listened to Koen breathing and said he would need some steroids and would like to do a breathing treatment to see how he sounded afterwards. As soon as she said that I thought 'oh man, why didn't I bring someone with me?". The doctor went and got the nurse and here came the nurse carrying the dreaded nebulizer. Payton immediately started screaming standing by the door - shaking. I asked the nurse if she could do the treatment and I could stand outside the door with Payton.....before the nurse had time to answer me the doctor came running in the room and Payton jumped in her arms. Let me tell you, I really liked this doctor before - but now I LOVE her. She took Payton out to the nurse's station and colored with her until the breathing treatment was over and the nebulizer was taken out of the room. Payton wouldn't come back in the room with us, but she atleast stood outside the door and watched as the doctor listened to Koen one more time, wrote us the prescriptions and then we were on our way.

Next we were off to Payton's appointment. She made a new best friend in the waiting room (a gentleman who was suprisingly very open to her friendliness). She brought a smile to his face and I enjoyed watching her try to strike up a conversation with him. Soon, they called her name and you could see her thinking "great, here we go". She hates stepping on a scale. She's worried it will make noise and really, she doesn't like standing on it. She's real timid and is worried about falling off of it. The nurse was quick to remind her she wouldn't let her fall and we got a quick weight and headed off to the room. The nurse was really good to her, as was the doctor. We got the usual "what's williams syndrome" and "do you realize she has quite a heart murmur" questions and soon we had the prescription in our hand (no breathing treatments for her thank God!) and were out the door. Funny thing about Payton is that she hates going to the doctor....but she hates leaving too. I usually have to drag her out kicking and screaming because she really enjoys seeing the people and would rather stay and watch or talk to them.

Honestly, I can't believe how good the afternoon went. Besides the nebulizer incident (which now I can look back on and think 'no big deal' but at the time felt extremely sorry for Payton that I couldn't get her out of the situation quicker). I feel like we are turning a corner. I almost felt like a regular ole mom taking my two children to the doctor...yet there was still a part of me listening to the sounds and watching the people around me trying to keep things from setting Payton off. Why do I have my mind trained to try and protect her from every little thing? Just like the doctor saying to adjust the environment for her....I can't! Just like the nebulizer - I can't keep Payton from the noise. Slowly but surely I'm starting to get the's just taking me a long long time.

Once we got home she continually asked me if Koen had to have his medicine. And, she even carried it around for a while showing us the machine....asking if she could throw it away. :) It unfortunately gave her a rough night of sleep...she repeatedly woke up screaming "Koen's medicine all done". Hmmmm...I wonder if the geneticist would've spent the evening/night with us last night if she would've thought Payton struggles with anxiety.

Monday, January 14, 2008

Sign Language

Yesterday morning at church we were sitting in the pew waiting for the service to begin when Jeremy, a ten year old boy with down syndrome, came over to give Payton a hug. After their big hug, Jeremy signed "I love you". Payton signed it back. Not one word was spoken by them but it was so touching.

The weekend was a tough one for Payton. After the appointment with the geneticist Payton had repeated accidents (which is very unusual for her). It was obvious she wasn't herself. I felt like I was starting potty training all over again...just having her run around in a t-shirt so we could try to make it to the restroom. A couple of times she would even just stand and go to the bathroom in the floor. Yesterday she seemed to be back on track though and we went without a diaper all day. But, the four days she was having trouble made me thankful she was potty trained. I take her and Koen to the doctor this afternoon...Koen to have his ears checked and make sure the infection is healed up this time and to also have his lungs listened to. I imagine he just needs some breathing treatments but he's awful congested. Payton has a nasty cough that I'm thinking might need some antibiotics to get rid of. So - hopefully by the end of tomorrow evening they'll be feeling back to themselves. Gotta love this time of year!

Thursday, January 10, 2008


Our appointment yesterday with the geneticist actually takes place over the television. This keeps us from having to go to Columbia and we can just see the doctor and talk to her without actually being in the room with her. Our appointment was the first one after lunch so we didn't have to wait to be seen. Upon entering, the secretary asked Payton to step on the scale. Immediately Payton started saying "no noise! no noise!". I stepped on the scale and showed her there wouldn't be any noise and although she was still against having to step up there she did it and weighed in at her usual 27 lbs. Once we had the weight she had to get her height and she was worried about the noise that would make as well. Once that was finished we were able to get her calmed down and started talking with the geneticist. The doctor was pleased to hear Payton's speech (the last time we'd seen her Payton was probably only saying a few words) and was shocked how tall Payton was getting (38 inches! I was suprised too!). We began discussing the anxiety and I was explaining to Dr. Miles how in the past I didn't realize how nervous Payton was because she couldn't tell me. But, now that she can talk I realize her poor sleep habits and violent tantrums all stem from anxiety. Yes, Payton obviously misbehaves, but her behavior is entirely different when it's caused by anxiety. She almost goes into a rage, which is quite scary and sad to watch. After much discussion the doctor proceeded to tell me that Payton has a delayed nervous system and that eventually her system will catch up and she will be able to take in and accept the environment around her. But, until then, we need to adjust our environment for her. Therefore, if she can't go to walmart, don't go to walmart (my dad went to walmart once and just tried to listen to see what noise could be bothering Payton and he believes it is the air conditioning/heating system). If Payton can't handle restaurants, then don't go to restaurants. I told her that was fine but Payton now has a younger brother and we are going to have to be able to go places for him. I don't mind her advice, but because she's never been in the situation, I don't think she realizes how secluded it feels. Even some family gatherings that we want to attend, yet have to say no to because it just doesn't work for Payton as far as eating out, attending ballgames, etc. She said Payton would eventually outgrow the anxiety and her nervous system would develop to where she can handle these situations. She also mentioned she thought Payton had an obsession problem to where she tends to obsess about things (baby elephants, windshield wipers, koen's nebulizer, etc.). I don't think I could ever get the doctor to realize that yes, she may be obsessing about it but it's because the noise hurts her ears. Even throughout the appointment there were several times she got real anxious and would say "what's that noise?". The secretary moved her coat and the buttons clanked against the table - it bothered Payton. Someone was talking outside the room, it made Payton nervous. Someone flushed the toilet in the bathroom and Payton gets scared. I don't understand how the doctor couldn't see from just the thirty minutes we were in there that the issue was anxiety. She kept thinking that Payton had adhd and needed medication for that. I disagreed and told her if she was to be on any medication it needed to be anti-anxiety. Therefore, she has decided to send Payton to a child psychologist and go from there. I wish so badly that before a doctor sees my child they would do a little bit of research on williams syndrome before trying to help us.

The afternoon ended well, though. We got to stop by my grandparents (my gpa had just had surgery yesterday morning on his hand and he looked amazingly well!). They can always bring a smile to my face - and Payton ofcourse gets spoiled rotten so she loves it too.

Monday, January 7, 2008


We had a really great weekend. The weather has been gorgeous here for the past few days - in the 70's. Payton has played and played and played outside while her daddy worked on trying to get the yard cleaned up from the ice storm. It was great to see her out running all over the yard. Koen is on his third round of antibiotic trying to clear up his stubborn double ear infection that doesn't seem to want to go away. It's crazy, even when he's sick he's a pretty darn good little boy. Unlike Payton as a baby, he can be soothed and it is the most amazing feeling for me as a mom to able to soothe him.

Last night Payton had crashed about eight o'clock and it was just Koen and I in the living room. The kitten (or kid, as Payton likes to call him) was hyper and ready to play as usual. I sat there in amazement while I watched Koen hold up this shiny granola bar wrapper in the kitten's face just waiting on Thomas to bat at it. Sure enough, Thomas would pounce at it and Koen would just laugh and laugh. I called Bob in the room to have him watch because I just could not believe Koen had already grasped the concept of holding up the wrapper, shaking it, and watching the cat pounce. Wow - he amazes me. I watch Koen walk around the furniture, try and interact with people, play in the floor with toys, and almost jump out of his skin with joy when his big sister Payton runs in the room. It's strange how different my emotions go up and down when I see these things happen. Yes, I feel pure joy and excitement. And, for a few split seconds my mind thinks "Wow! My baby boy is a genius!" When, in all honesty, I realize he is doing things in typical fashion....reaching his milestones when most babies do. However, at this point in Payton's life she wasn't quite sitting up yet and getting her to interact was nearly impossible. She worked so hard to do things that seem so easy for Koen and that ofcourse brings me some sadness.

Thankfully, Payton doesn't yet know any different but I think of the future and wonder what this world will treat her like. I pray all the time that God will give me the words and wisdom to help Payton understand that God created and designed her special for a purpose beyond our imagination. She's already taught me more in her four years of life than I ever thought I would know. Although, I know some day I will more than likely hear her say she just wants to be like everyone else. But, in my mind, I feel like I have two miracle babies. One that I'm so thankful she made it here and is beating many odds from the loss of genes that now define her life.....and the other one, my little man, who amazes me beyond belief at his ability to grasp things so quickly. Even though I know the things he does is typical, I consider it a miracle.

Wednesday, January 2, 2008

Poor cat

Poor Thomas can't seem to catch a break. He thought he'd found the perfect hiding place (the dryer)...but needless to say Payton found him and decided to join in. (I have a feeling Payton and Thomas will be lifelong buds).