Our Journey

School Days

2010-09-22T15:04:00.003-05:00

Payton has finally gotten in the routine of going to school and I am no longer carrying her in kicking and screaming. She has a wonderful teacher this year and still has the same special ed teacher, but a different aide. I think 1st grade is really going well for her so far. It's becoming quite apparent this year that the students are quite a bit more mature than her, emotional wise she is still about on a level of a three year old (sometimes it feels like I have twins - but other times it feels as though koen has passed her) but amazingly the other children seem to sense it and want to take care of her.

Last week we were on a blood pressure roller coaster, but it seems to be doing better this week (YAY!). She has quite a nasty cough so I'm sure that's what was causing the increase. Funny enough, the bp usually increases before we see outward signs of an illness...then sure enough, she has a cold or something and that's why the bp is up.

This week we've had a heck of a time with Payton's hygiene in the bathroom. At home I don't let her go by herself (unless of course she sneaks away from me and gets in there without me - in which case I usually have a huge mess to clean up). The past two days she's done the same thing at school. She has had quite the smearing contest all over herself and I've had to take her different clothes (she even had it in her hair!). Anyways, I believe the problem lies with the prolapse. She has that sensation when it comes out that she still needs to go to the bathroom so she is trying to 'help' it out with her hands. It's just been a mess - and I feel sorry for the nurse and janitor for having to clean it up. I've got a call in to the doctor to see where we go from here - I feel sorry for her having to feel that all the time....but without a major surgery there's really not much we can do I don't think. It sure makes Bob and I uneasy though.

Payton's been working really hard on her writing - she still has issues with her letters; one letter may be giant, while the next one is small and the letters will never be within the lines. I know most of it is her visual spatial difficulties, but she's working and listening to instruction on it, so that's a plus! She's also trying to learn to read. Bob and I have been so proud of her....even with her ADD she is able to be kept on task for a short amount of time :) Because we've been working with Payton so much, Koen wants to work on it all the time. I've got polar opposites. Koen wants to learn and Payton could care less. It's quite comical to see Payton try to wiggle her way out of going to school :)

After school my dad (or her cousin, Tanner) keeps Payton. This way she can at least be home or at her aunt's house to re-group-which is oh so important for her. She's managed to do some destruction (paint my piano keys with a green marker - three lines up and down them) and paint herself with nail polish - but it's nothing that can't be cleaned up. We still have to watch the girl 24/7 or she will get into something. I've just decided because she has no clue how to play unless someone is 'showing' her how to play or entertaining her, that's just how she entertains herself. I've learned to laugh it off at the end of the day!

Koen is growing by leaps and bounds and loving all the football games. He has so much fun watching the games and playing with the boys older than him in the end zone-it really is a joy to watch him play so care free.....the things we don't take for granted anymore :)

Here is a wonderful blogpost from Teresa on inclusion. Although it's easy for me to say things are going well for Payton in school, it really is a trying and exhausting time. I thought Teresa did a great job walking thru the emotions: http://claresjourney.blogspot.com/2010/09/mainstreaming-is-not-for-wimps.html

2010-08-02T11:17:00.002-05:00

Well we made it through VBS - not quite sure why we sent her-but hopefully she got something out of it :) We did get a lot of use out of her headphones (to reduce the noise) and one time the music minister caught Payton just wandering the halls looking for her mommy. Guess she managed to escape-she is so stinkin fast!

Last week she and Koen got to enjoy several days with my mother in law. Wanda came to our house for a few days to keep the kids while Bob and I were at work and my kiddos loved every second of it. Wanda got to see Payton's obsession with phones - ending the visit with a call to 911 and a police visit to the house. The policeman tried to explain to Payton what a 'real' emergency is (Payton likes to call when anything is wrong - her bike is broke, her phone is broke, mom and dad are going the wrong way to church, etc). So, sadly this is not the first time Payton has called. I'm sure the policeman thought it would help to talk to Payton, but sadly it only feeds Payton's obsession more because she LOVES policemen. So, a visit to our house was exactly what Payton wanted. hehe.

We are on the countdown to school now....just a few more weeks. I am so ready for Payton to be back at school and in that routine. I know it will help her a ton! Scary to think next year Koen will go to preschool. Where does the time go?

VBS

2010-07-26T15:53:00.002-05:00

Payton is trying her hand at vacation bible school this week. I thought I would just take her for the music portion but after hearing everyone talk about it she thought she needed to go to class. It lasts from 5:45-8:45, so it's pretty long, but hey, you never know until you try. Around 7:00 we got a call that Payton was 'done', so I headed back to the church to pick her up. Turns out one of the helpers had taken Payton to a 'quiet' place and had taken her on a walk around the church. By the time we met back up, Payton was ready to go back to class and try again. I knew since she'd seen me that I would be staying the remainder of the time with her, but I was really proud of her. Although she's not communicating it exactly the way most children would, when she has had her 'fill' she will say "get me outta here!" or complain of something hurting - such as her ear, tummy, or leg. Those are the signs she is getting overstimulated and I am so proud of her for understanding her body enough to know when she is about to reach the point of overdoing it. Sadly the next day we pay for it by her behavior - she just takes a lot in and the following day she lets it all out. My mother in law is in town and is such a blessing - so patient with her (and also helping with Koen who is running a fever, but is happy as long as he has Motrin :) Anyways, we'll keep at it the rest of the week and see how she does. I'm just so proud of her for going - and then taking herself out of the room when she feels overstimulated. What a huge milestone for her!

WS Convention 2010

2010-07-20T15:21:00.003-05:00

We arrived at the hotel Sunday evening and it became apparent to me the trip was going to be amazing. As soon as I walked in the hotel lobby I was surrounded by people who looked exactly like my daughter. Payton was everywhere - she almost didn't know what to do with herself-she wasn't walking anywhere, she was running - to the elevators, escalators, anywhere she could go. The great thing was, when she would see people and ask their names (twenty times over) and introduce herself to them, they didn't just look at her like she was a child who was out of control, they responded, smiled at her, and just ate it up. We were surrounded by people who 'get it'.

Once up to our rooms (we got an adjoining room with my mom), I told my mom it was really emotional to see a hotel full of children and adults who are fighting the same battles as Payton - the same health problems, same behavior issues, etc. It felt like one big happy family. We were home.

The sessions were wonderful-my favorite part being the interaction between parents and learning how similar situations were. Hearing specialists speak about anxiety and sensory issues and give suggestions......you can't really put a price on it. Because of that, we will be making some changes in Payton's IEP to get a sensory diet and even work on replay for her anxieties (at home and at school).

One of the sessions my mom and I attended was for the siblings of special needs children. I focus a lot on how things affect Koen. Obviously, he knows no different now, but I fear he will one day question all the focus on Payton (her doc appointments, mtgs at the school, and just the extra time she requires compared to him). It was nice hearing some of the parents talk about how their typical child feels - for instance, how they feel they've missed out on having a typical relationship with a brother or sister. Ofcourse most parents say this thru tears because it is painful, but how wonderful to know we all share the same concerns and fears. They even gave suggestions on how a four year old child may explain to his buddies who ask "what's wrong with your sister?" and each year how the description will change as the sibling gets older. But on the flip side it was wonderful to hear the opportunities the siblings have - such as meeting new people they never would've met (at conventions), what a great sense of humor they acquire, how mature they become, and how they are inspired by their brother or sister with special needs. The sib session was one of my favorites.

The session on anxiety was wonderful as well. One key point I learned was how long it takes the body to recover after an experience that is frightening (in Payton's case it could be a fire alarm or a train whistle-depending on the frequency of the noise) and reiterating how truly painful hyperacusis is. Once the anxiety/panic attack happens it takes her body four hours to recuperate and get the hormones back down to a normal level for her. I had no idea it took this long. So-telling her "it's over, it's fine, don't worry about it anymore" doesn't really do any good for her. She can't help it (which is good to know because we really struggle with her behavior after those scenarios-it's good to know the reasoning it takes her so long to get back to herself). And-even better to know that so much of it is neurological and she really can't help the way she reacts. I have always assumed her systems are more fragile and it was nice to have a professional confirm this and remind us to be compassionate.

And then ofcourse the stimming. I've never really thought of stimming as anything other than spinning wheels or rocking, but I was shocked to realize that when my daughter is talking about trains nonstop or sitting on youtube watching trains she is in fact stimming. The OT and ST recommended not taking these things away from her, but in fact using them as a reward or limiting the time ("You have two minutes to tell me everything you know about trains but then we have to get to work" or "you can take all your phones to school with you so you know they are safe, but they have to stay in your backpack" or "If you have a good day you can print a train off").

We do plan on having an evaluation at CMH in Kansas City with an OT (referred by Noel, so I know she's good!) to get us a sensory diet set up for Payton and then the school will have on paper what she needs to keep her from getting so overstimulated. I've learned Payton has sensory over-responsivity. She needs sensory integrative therapy, a sensory diet at home and at school to facilitate optimal alertness, and may even need to use the Wilbarger Protocol (brushing). What is so wonderful in learning this is that we can now understand why she responds to sensory messages more intensely, more quickly and for a longer period of time. Another great thing to know is why in the world Payton is soooooo loud but yet can not tolerate loud things around her. The OT said a lot of times people with hyperacusis are the most noisy because of middle ear musculature. Intriniscally, a child can modulate ear muscles when noise is being made by him, but when it comes from the environment around her, she is in severe pain. She reminds us we need to respect that for Payton and realize she can't just get over it. It also explains why she is so easily distracted - she is hypervigilent of any sensory information coming in. We also plan on getting a velcro chart so she can visually see what needs to be done each day (for getting ready in the morning, using the restroom, etc). She knows what she is supposed to do, but her focus is so bad she can't focus long enough to do these things properly (using the restroom is a big problem for her). They have a 'door buddy' that she can take to the restroom with her so she can see each step and hopefully follow them in sequence. We really do have hope these changes will make things easier for her and then ofcourse it makes it easier on the household.

Then there's the session on preparing financially for your child's future. Bob and I have a lot of work to do in this area. I was unaware of a lot of things mentioned in this session - it's too bad the laws are set up the way they are for special needs individuals. My brain was fried after this session, but at least we now have an idea of where we need to go and what we need to be doing.

The greatest part of the convention was meeting the wonderful ladies who have been a huge support to me the past few years and of course getting to see the ones I've already met in person but rarely get to see. It was amazing to see them in person and I can't wait to see them again in Boston :) I'll try and add some pictures soon - I do have them posted on my facebook page, though. For anyone who has the opportunity to go to the convention in the future, I highly recommend it. Not just for the information, but also for being around the family of individuals who understand everything you've been thru. AMAZING!

summer time

2010-06-22T15:00:00.004-05:00

Payton and Koen are having a great start to their summer. Payton loves her break from school and Koen loves having his sister at the sitter with him. Both of them are in swimming lessons and they have become quite the little fish-which thrills me because I love being at the pool.

Payton just had her dental surgery last week and did great. They only had to pull one tooth (most of it was gone anyways), cap one tooth and then put filling in the other three. They ended up knocking one of her teeth loose, so she and Bob ended up pulling it over the weekend (which she did fantastic with that as well, too!). The only downside from the visit was that she is missing seven of her permanent teeth, but they are all molars. So, it could be worse - it could be the front ones she is missing. And, teeth can always be fixed-I was just suprised to hear she was missing seven :)

In a few weeks we head off to the ws convention in st louis and are excited/anxious all rolled in to one. We are so excited to finally meet people we've talked with almost daily but never met face to face!

Time for an update

2010-02-09T08:48:00.002-06:00

Wow, I can't believe how time is flying. Payton is doing well in school and Koen is growing like a little weed. Koen is currently in the spiderman stage - about 85% of the time he is spiderman and loves to save me from the bad guys. He brings us so much joy. He loves to read, work puzzles, and do anything with a ball. We can't wait to be back outside this spring (and spring can't get here fast enough!).

Payton doesn't seem to care for school too much - she says it is sooooooo long, however anyone that sees her at school says she always has a smile on her face. Which, ofcourse, puts me at ease. They're still working on her fine motor skills and strength - she just really doesn't have much upper body strength. That's their biggest concern right now, so she will start going to the hospital for OT sessions once a week. She's excited because she gets to ride in the hospital van with the special education teacher (eventually a para will take her)....but more than anything she loves the hospital because of the treadmills. We're anxious to see how her focus is - we have a feeling she'll be way preoccupied with those treadmills. Behavior wise she does well for them at school. She did get the lowest score possible on controlling her verbal impulses, but that is expected with her. Even in church it's not unusual for her to just yell out "I LOVE PIZZA!" or whatever is on her mind.

We're having issues with her blood pressure again - running around 138/76 of an evening so we are working with the nephrologist to try to figure out what to do medicine wise. She currently takes her three medications at 7am, 10am, 2pm, 5pm, and 8pm.....so I'm guessing she may need to add another one in the mix somewhere. Ofcourse, I want to get it regulated before we go for her pre-op appointment Feb 25th and surgery March 4th (dental).

Koen's healthy as a horse. All we ever have with him are ear infections (we're treating one right now) but we don't think we're going to go another round of tubes. It would be his 3rd set and we really would like to see if he's going to start outgrowing it.

Koen and Payton are really starting to play some together and it's such a joy to watch. Payton doesn't play a whole lot, but when she decides to they really play well together. Koen is so patient with her and he really does make my heart melt. God really has blessed us. I don't know what in the world I would do without my kiddos.

Hospital

2009-12-23T21:37:00.002-06:00

Payton's been in the hospital for a couple of days now and I can't tell you how proud I am of her. She has been so tough and really only had a few meltdowns (which in itself is amazing!). I took her to the doctor concerned she had a bladder infection and before we left the office they were scheduling her for a chest X-ray because of her cough. I wasn't even worried about pneumonia because I didn't think she sounded bad, but turns out she had double pneumonia and ended up in the hospital. Sure enough, once they started the breathing treatments she really started coughing and hacking, so it definitely was a blessing we went to the doctor's appointment and he heard her cough.

Payton has become the greeter and the entertainment of the hospital. No one can walk by her door without her yelling "Hello!" or "Come on in!" and if someone does come in, they get the question "Where's my present?" Yikers :) I was concerned about her getting the breathing treatments because she hates her brother's nebulizer (the noise) but it's so much quieter it hasn't even bothered her. She usually ends up coughing so much she throws up when she's having a treatment, but she's done fantastic with it!

The nurses are shocked how well she can swallow her pills and take her liquid medicine, and usually are so good to her that they receive a "Aahhh, you're so nice" or "you've been good, you're going to get presents!" before they leave the room. She is loving the socializing in this place! She is also loving the warm blankets they can give her at the drop of a hat (instead of having to put it in the dryer like we do at home and wait a bit for it to get warm).

The only time she's really given us any trouble is when she is ofcourse tired at night or when she passed by the physical therapy room and saw all the treadmills. She has quite the obsession with treadmills and she gave us quite a meltdown over it. Eventually, she and Bob went and watched the treadmills for about an hour while other's were having their therapy. Thankfully the nurses allowed her to do that, otherwise I'm not so sure she ever would've calmed down about it until she went to sleep.

Right now she is sleeping peacefully and we're hopeful she'll be checking out tomorrow - just in time for Christmas! However, if not, the nurses have reminded her there is a chimney here and that Santa will find her. Much love to all of you and I hope you all have a very Merry Christmas!

Thanksgiving

2009-11-30T08:38:00.003-06:00

Thanksgiving was a little different this year. We travel about three hours to go see Bob's folks and after about an hour into the trip I decided it just wasn't going to work for Payton this year. For some reason for about six months or so Payton has been terrified of getting lost if we leave Lamar. It seems strange to me that even though she's with Bob and I (and we've never been lost before) that she doesn't trust we will get her there and know how to get back home. She was terrified - had cried and screamed for an hour and was just shaking. She and Koen were sitting in the back seat in their car seats and Koen had reached his hand across that back seat and held her hand for probably around 15 minutes. It's so amazing how he tries to take care of her.

Who knows if Bob and I did the right thing by turning around and meeting my mom to take her back home, but neither of us could stand seeing her terrified for two more hours of driving. My mom said after she got in the truck with her, Payton had her hold her hand all the way back home. It was dark and when the billboard signs would come up on the side of the road Payton would get scared and jump. Then, when they reached Lamar, Payton said "ahhh, Lamar.....did you hear that?" My mom told her she didn't hear anything and Payton said "they all said hi to me." Just from that short conversation Payton had with my mom it's very apparent to me that Payton was relieved to be back in her familiar surroundings, which makes me feel better about the whole situation. I have a call in to her developmental pediatrician to see if there's something he can give her for traveling. Christmas is coming up and ofcourse we don't want her to miss that trip! And, we were really hoping to take the kids to Disneyworld over Payton's spring break this year. However, this may have changed our minds ;) Although, Thanksgiving simply was not the same without her, there are so many things I'm thankful for:

I'm so incredibly thankful we can go to God in prayer for strength and peace that only He can give us and more than anything, I'm thankful for His grace and mercy that I do not deserve.

I'm thankful my children were healthy over Thanksgiving. The WS family has been hit so hard lately with the loss of two beautiful children and several hospitalized. They were all in my thoughts this past weekend.

I'm thankful my parents were willing to watch Payton while we made the trip to see Bob's family. My mom had a big meal to prepare for Friday and it meant a lot to us that she and my dad were willing without hesitation to keep Payton.

I'm thankful for my husband who, no matter what the situation, encourages and supports me.

I'm thankful Koen is so loving to his sister. He really does care about her and may even be more patient with her than Bob and I! :)

And last but not least, I'm thankful for modern medicine. It's amazing how much better Payton feels (and looks!) when her blood pressure is under control. She just glows and has the best belly laughs when she feels good!

I hope you all had a wonderful Thanksgiving and have a very Merry Christmas!

Some pics

2009-11-24T14:31:00.004-06:00

Payton loving on Uncle Jon :)

Koen and Payton

Cousins Evie and Joanna, Koen

Payton with Cousins

Koen and Evie

Payton making a mess with her cookie :)

And now for an update!

2009-10-28T10:06:00.005-05:00

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

2009-10-05T21:40:00.003-05:00

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

2009-09-21T13:32:00.004-05:00

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

2009-09-06T21:23:00.002-05:00

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

2009-08-26T08:39:00.002-05:00

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

2009-08-24T11:08:00.003-05:00

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

2009-08-21T10:32:00.004-05:00

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!

School days

2009-08-20T14:39:00.002-05:00

Payton seems to love kindergarten. She doesn't fight me at all to go in the morning and just makes her way to sit in the hallway with the other kids in her class until school starts. I crack up because she looks like such a peanut compared to the other kids her age. BUT - she can definitely stick up for herself if need be :)

The evenings right now are the hardest part for her. She spends a lot of her time being really emotional but I know she is still just trying to process her day. Thanks to my father, she is able to come home after school and just be calm and do her own thing. This gives her time to spend with grandpa and time to just process her day. Thank God for family.

Payton's BP has still been pretty high even since this last increase on medicine. Last night it was 128/80...but I'm trying to be patient with the new routine starting. With the extra stress and anxiety I'm sure it could make it go up. I'm just doing the 'wait and see' right now. However, a couple of nights ago she scared me to death. I had taken her and Koen out on the trampoline to give Bob a little bit of a break (he'd picked Payton up from school and she'd been in meltdown mode for two hours...so he needed some peace!). Anyways, we weren't jumping but for a couple of seconds and she grabbed her head and screamed "what's that?". She'd never said it quite like that and I could tell she was in pain. I grabbed her and had her sit on my lap for a while and Koen continued to jump. After a bit, Payton and I stood up to jump again and Payton grabbed the inside of her upper arm and started complaining of it hurting. That got me concerned so I took the kids inside and took her blood pressure....by this point I was afraid of a stroke or heart attack...you know, all ready to call for an ambulance. Her BP was high, but not abnormally high. So, we sat down and kept an eye on her. I called my mom because I was still worried about it - but her speech was okay and she seemed to be acting okay. I have no idea what caused those pains but it really did scare Bob and I. You know, it's not that I'm 'thankful' for williams syndrome, but I sure do look at things differently than I ever did before.

And Koen.....he is still going to Dawn's and having a ball. He does ask about Payton every day wondering where she is. We tell him she's going to school and he just says "OKAY!" and is out the door with his baseball helmet on (I don't know why but that boy loves wearing a baseball helmet, football helmet, or a baseball cap...he cracks me up).

Payton's first day of school

2009-08-18T10:56:00.003-05:00

Payton's first day of school was yesterday. I was able to meet her aide (which I've heard wonderful things about) and help her find her desk and locker. She seemed more than happy to be there and was very excited to start her day. As I left the room she was sitting at her desk with her para and yelled "BYE MOMMY!" No tears for either one of us :)

I thought about her all day wondering how in the world she was doing - especially during lunch. Carrying something and not spilling it is still very difficult for her and as anyone with our kiddos knows....eating is still very messy. (Bob and I are amazed how much better Koen can hit his mouth with his silverware than Payton....she covers her face and clothes!) I also worry about her on the playground, but my guess is she will spend the majority of her time in the swing. She loves to swing!

Because I work til 5pm I'm not able to pick her up from school. Bob picked her up yesterday (I can not tell you how worried about her he was yesterday). The kids sit outside their classroom in a big group and when the adult comes to pick them up, they call the child's name and the child comes to them. Unfortunately, when Bob went to pick her up Payton had the spaced off, open mouth look (as my mom says, the look we all see on her when she's in her own world....and get so sad when we see it). It pretty much devastated Bob and he's had a lot of trouble dealing with it. He's been up since 4am this morning worrying about her....funny, I was the nervous one before and now I'm ok and he's worried. I guess it's a good thing we take turns. We know she is being well taken care of, but it's so hard to let her go when you know she really doesn't understand so much yet. Yes, she's five, but really at a three year old level. She needs to be more independent but it is so hard to have her at home and not notice a delay but then take her to school with her peers and see that she's no where near she needs to be. Then, the fear sets in. How can she take care of herself, how can she learn in this atmosphere, can she keep up? Questions in time that I know she will prove to us she can do....it's just tough.

After school she had to go to the dentist. She's lost a majority of one of her back teeth and unfortunately she'll need to have it capped, cleaned out, etc. There's no enamel (from what I hear that's common in ws?). Not looking forward to her being put under for that, but I know she needs to have it fixed.

Let the school year begin!

2009-08-11T12:18:00.002-05:00

Yesterday we met with Payton's kindergarten teacher and special ed teacher. They gave her a tour of the building and let her see the classrooms....and she seems more than excited about going to school. I know in my heart she's ready to go, but still get so nervous and sick to my stomach when I think about it. I know so many are going to think this is the silliest statement, but I know I would feel more comfortable sending Koen off to school than Payton. There is such a difference....I know Koen can fend for himself and figure things out. Payton did fine in preschool and the amazing thing was, children could already tell she couldn't do everything they could, so they helped her. I know that's what will happen in kindergarten as well. But, she's my baby, and it scares me.

And, I know Payton doesn't understand yet....but the gap is getting wider. It's so hard to see her around other kindergartners......and it really does hurt to know that the heartaches I feel with all of this will never really go away. I have really excellent days/weeks and then for some reason have a difficult time. The past few weeks have been the latter. I'm sure it's just the stress of the school year beginning - worrying about her blood pressure, anxiety, prolapse, all the 'what ifs'. But, worrying doesn't solve any of it. Like Bob said, all we can do is pray for her. One more week and I'll be able to post how it goes!

Payton's BP

2009-07-30T12:37:00.002-05:00

Payton's blood pressure has been giving her trouble for the past three weeks, but we've increased it again and hopefully this will do the trick. With this last increase, she's maxed out on this medicine, so I guess if she has any more trouble they'll start her on another medicine. Seems like that is really common in children with ws.

Payton's latest fascination has been Wii Music. Actually, all of us have had a lot of fun with it! Payton gets to direct choirs, bands, play a ton of different instruments, etc. She loves it! And, is actually pretty good at it :)

The other amazing thing Payton has done lately is put her head under water! I can't tell you how much private swimming lessons have helped her this summer. She now holds her head under water for a couple of seconds and Bob and I are beyond shocked. We're so proud of her!

The kids have had a really great summer so far. Koen LOVES jumping on the trampoline and riding his trike and Payton is usually chasing butterflies or trying to catch lightning bugs :) It's so neat because Koen really wants Payton to do everything with him. He can't say 'Payton', so he calls her 'Mimi'. With a little encouraging, Payton will generally end up doing what he asks her (like "mimi, jump?" "mimi, swimming?"). It really feels so good to see them doing things together.

Honestly, Bob and I could not have asked for a better summer. Things have fallen in to place really nicely. And, even when the bumps hit (like the past three weeks with an aggressive, sleepless little girl) we know there is an explanation....something has made her nervous/anxious or her blood pressure is up. Yes, the blood pressure does make me worry what's going on in that little body of hers but I'm so happy for some answers as to why sometimes her behavior is so aggressive. Thankful, thankful, thankful. :)

Pictures and an update

2009-07-15T11:00:00.006-05:00

Tractor in hand, football helmet on - can't get any better than this :)

Kiss for Koen :)

Real quick update.....Avery made it through surgery and was sleeping sound yesterday evening. Hopefully her mom was able to get some much needed rest. Claire has her surgery for her aneurysm today - could be a 3-6 hour surgery. So, keep them all in your prayers today.

I've got a call into the nephrologist on Payton's blood pressure - so hoping to hear back from them real soon. Payton has managed to only have one potty accident this week - so we are making headway in the 'accident' department! YAY!! She has gotten a lot of cheering on from us :)

More prayer requests

2009-07-11T21:27:00.004-05:00

Please continue to keep Avery in your prayers.....looks like she will have to have a pacemaker. Also, keep Claire in your prayers as she has surgery for her A-V fistula next week.

Blood Pressure

2009-07-10T20:51:00.001-05:00

The past two evenings Payton has been very very emotional. Wouldn't you know it - her BP is back up. I imagine an increase in meds is coming her way. Funny how their little bodies adjust so quickly to the medicine, isn't it?

Well, Koen's behind me yelling "hut! hut!" with the football.....so I better get :)

Sunny

2009-07-07T07:44:00.002-05:00

The sun has been shining bright on the Littlejohn house lately. We had another fantastic week. Meltdowns after transitions have been few and far between. When she does have one, we ask her to go to her room and she usually goes willingly to get herself calmed down. Bob and I just kind of look at each other like "is this really happening?". I'm so proud of her and how far she's come.

She spent a couple of nights with Bob's folks last weekend and Bob and I were both dreading the few days after her return. Generally they are filled with giants sobs and an inability to cope with anything. This was not the case this time and makes us realize there is a light at the end of the tunnel. Even though we've been told this would happen and she would begin to understand more, it doesn't seem like it will ever happen when you are going thru it.

Once we picked up Payton and Koen after being gone for a couple of nights, I sat in the back seat and watched Payton stare at Bob for nearly an hour and a half trip in the car. Not just a typical stare, but a stare that looked like she hadn't seen Bob for years. She was studying his face and asking him to smile a certain way. I've never seen anything like it. It was almost mysterious, like she was memorizing every freckle, every crease. In articles, I've read about babies with ws....how they look more at faces and really gaze. Payton did that as an infant, but this is the first time I've seen her do it this much lately. She had me mesmerized.

Life is simple at our house. We spend nearly every evening at home - usually outside. Koen is typically riding his little three-wheeler, playing baseball, or swimming while Payton is usually sitting at my side using her daddy's iPhone to listen to different train signals. I sometimes get sad that she's not up and playing with her brother more often, but the sound of train signals for some reason is something that really makes her happy. And it also seems to help her relax - just sitting there doing her own thing. I'm sure some would call us quirky, but we are enjoying our peaceful evenings - even if it does include train bells :)

Sleep actually exists at our house now! Just going on mother's instinct, I believe the major cause of Payton's sleep issues were blood pressure. This past weekend she was complaining of her eyes hurting (which for her, is the clue that her blood pressure is up) and sure enough, her blood pressure was high and her sleep (and behavior) was 'off'. On one hand I am so happy she is feeling better and sleeping better and on the other hand, I feel sad for her that for five years she was miserable and we just couldn't get a good reading to know why. But - I can't think about the past....I'm just so incredibly thankful she feels better now!

Before I sign off here, I just want to ask you to please keep Avery and Michaela in your prayers. Avery is recovering in ICU and Michaela had an MRI last week. I know their families could use all the support and prayers they can get.

Life is Beautiful

2009-06-29T13:39:00.002-05:00

Bob and I just finished up possibly the best week of our lives with Payton. The huge meltdowns were few and far between and they only thing we were really dealing with were the repeated episodes of wetting her pants. Even the destruction of my house was kept to a minimum :) I attribute most of this to us being able to be outside nearly every hour of the day playing in the swimming pool. I don't know if I could even put into words how stress-free I felt last week. It felt pretty darn amazing!

After attending my niece's 1 year old birthday party on Saturday, Payton and Koen went home with Bob's mom and dad. They were in much need of some one-on-one time with their grandparents because they just don't get to see them that often. They stayed two nights (we get to pick them up this evening, and the hours cannot go by fast enough for us!). This is the longest they've been away from Bob and I and it's been pretty darn tough. Plus, we honestly have no idea what to do with ourselves! We were able to go out to decorate Kayden's grave in some peace and quiet, which was nice. It doesn't seem like it's been five years ago.....time doesn't even take away the feelings you felt. Going to the grave site always brings the feelings straight back. However, I take much comfort in the fact he is safe in the arms of Jesus.

Saturday after the birthday party, Bob and I went to see the movie My Sister's Keeper. I'd seen an interview with Cameron Diaz and thought it was definitely a movie we needed to watch. Wow-it was a great movie. Some of it was a little to close to home and heart breaking to watch, but still a fantastic movie. In the interview, Cameron Diaz was explaining how this movie is about any family that has a sick child - whether it be a child with cancer, autism, syndrome, etc-it shows how it affects the family. Bob and I both felt like they did a really good job with this movie. The father in the movie stated it best:

"Having a child who is sick is a full time occupation. Sure, we still
enjoy the every day happinesses of family life. Big house, great kids.
But, beneath the exterior there are cracks, resentments, that
threaten the very foundation of our lives.
Somehow, the very things that tore us apart would bring us
together in ways we would have never imagine."

I won't go into anymore detail on the movie because I don't want to give any of it away. But, it really is an amazing, touching movie. Just take a box of kleenexes :)

Potty training

2009-06-26T09:06:00.002-05:00

Welp, Payton's been potty trained (thru the day) for quite some time now. However for the past three weeks she's had accidents daily. I am AMAZED how often this little peanut has to go to the bathroom. Every fifteen minutes sometimes. Have any of your doctors explained why they have problems with this? Just small bladders?
I'm also wondering if it's just the transition from preschool to no preschool....and she's just not transitioning well. Hmmmmm........

Koen's first haircut

2009-06-24T13:26:00.004-05:00

Koen got his first hair cut this past week. He is losing his baby look and is starting to look like a little boy. I can't believe it! I need to post a video so you all can see his personality. He is the funniest, easy going little man. And-since his second set of tubes, he is really starting to talk more. The other night he ran up to me and said "BIG HUG!" (ofcourse, it was in his deep 'manly' voice) and he wrapped his arms as tight as possible around me and gave me the biggest hug. I've been blessed with two really affectionate kids. I know Koen will probably grow out of that (and be embarassed to be around me!) but I imagine Payton will be affectionate forever :)

The kids have really enjoyed their summer so far. Most of it is spent in the back yard in the baby pool. We put a little tikes slide in the pool and the kids have a blast sliding down into the water. I've been tempted to put Koen in swimming lessons because he really likes the water, but I think I will wait until next year. Payton has only had one lesson (they were cancelled yesterday for the weather) but we have another one tomorrow and I feel really good about them. Being one on one really changed how she handled them.

Bob took Koen to the ENT yesterday to have his ears checked and they look great. He took Payton along because the doc and nurse really enjoy her company....they were thrilled Payton came along with Koen and she got to leave with stickers and suckers as well. That is one doctor that Payton is not afraid of. And, ofcourse, Koen is not afraid of that doc either. Payton's BP also seems to be staying steady right now at about 105/65 so we are more than pleased. Right now, we are really just enjoying our time at home and watching the kids play.

Please keep the Calvert family in your prayers. They lost their 3 year old daughter, Ruby, who had williams syndrome, last week. I can't even put myself in a position to imagine what she is going thru. My heart is aching for their family.

2009-06-22T08:48:00.003-05:00

You make my heart so very happy!

-said by Payton Littlejohn, right before bed. Perfect ending to a fantastic day.

Somebody pinch me!

2009-06-17T09:54:00.003-05:00

Payton had swimming lessons last night and she did fantastic! We decided to try private swimming lessons this year and it was perfect for Payton. The young lady who taught Payton had also taught another little boy with down syndrome, so I thought she would be a good fit. She was so patient and Payton loved every minute of it! After the experience last year - I am thrilled. It's amazing what one year can do :)

Kind of Blah

2009-06-15T16:16:00.002-05:00

I don't know what is wrong with me, but I have been in a funk lately. I have been trying to 'go' a bit more with Payton. For instance, last week I decided I would take the kids to walmart with me. Bob had some much needed yard work to get done and I thought it would give him the opportunity to get it done without little hands trying to help. I still can't figure out why I can not take my child to walmart. I was humiliated - and still when I think about it I get really sick to my stomach. Note to self: Avoid the vaccuum cleaner aisle when with Payton at walmart. We were in the vaccuum aisle for over 20 minutes and when it was time to go - woah. I had a cart full of stuff and she screamed at the top of her lungs for a good ten minutes while I endured the awful glances of the other shoppers. Everytime I placed an item on the table to be checked out she would scream "NO! That's mine!" I still can't believe how ridiculous it was. That's when I feel I need a sign for she and I both to wear on our backs. Just be patient, she's special. Sadly, she and I both walked to the car in tears. (Koen didn't though - yeah!)

This past weekend we went to see Dora Live! Payton loved it - she watched it the entire time with her fingers in her ears (it was noisy!) but she LOVED every second of it. Intermission was tough on her - she cried/screamed thru the whole thing because she thought Dora had left for good. After that, I was concerned about the end of the show, but she did okay with the fact that Dora was off the stage and gone. Leaving the theater was a whole other story. Now that Payton's five and a half years old, it's tough dragging her out of places. She is one strong little girl and even at the zoo it's embarassing to try and carry (or drag) a thirty pound, long legged little girl out.

I feel numb and quite emotional at times. I love Payton so much and she literally brings such happiness and joy to our family but I am so ready for her to show some type of change in the area of meltdown and temper tantrums. I wish so badly she could handle change. Someone with older kiddos chime in here.....is she ever going to realize this behavior is completely inappropriate? Or does she already understand it but just can not control the behavior. She has us stumped....and again, flabbergasted because it is so obvious Koen 'gets it' when he is in trouble. I really want to be able to take her places and not be scared of how she's going to react.

Payton will answer questions logically.

2009-06-07T19:58:00.003-05:00

When I opened the letter from the special education cooperative, this is the first goal I saw. She hasn't achieved this goal, but is still working towards it. I don't know why, it's not a sentence I haven't seen before, but this time it kicked me in the gut. I imagine it's because I had such an incredibly rough weekend with her and seeing that sentence on Saturday evening made me realize the reason the weekend had been so tough is because she lacks in reasoning and logic.

Routine is still very important for Payton. Thursday evening, Bob picked Payton up from Dawn's instead of me. Generally it's me that picks her up and she was 'off' all night long. I couldn't figure it out, but as I was putting her to bed she informed me she was not happy with me. When I asked her why she said "you not pick me up". Then, the whole messed up - full of meltdowns - night made sense. I always find it so strange that it really throws her off when one little thing is different, but when something changes for her, it really messes up her clock or something. I guess it's the anxiety coming out. This is where reasoning and logic comes in. Forget trying to explain something to her - things just don't make sense for her. I'm sure in time it will come to her but it's hard talking to someone who is in a five year old body and see that she can't 'get it'. And it's really strange because if I say the same thing to Koen, he does get it.

The conversation can simply go like this:

Payton: I want to go outside.
Koen: outside!
Mommy: OK, before we go outside, we have to put our shoes on.
Payton: screaming and crying
Koen: OK (and we put his shoes on)
Payton: I want to go outside!!!!!! (screaming)
Mommy: Ok, Payton, but we have to put your shoes on. Look at bubby, he put his shoes on. Now let's put your shoes on.
Payton: Screaming and crying, sometimes laying in the floor, sometimes attacking me. This can go on for atleast 30 minutes and my 2 year old typically waits patiently until we go outside.

Something as simple as putting shoes on - my 2 year old gets it, Payton doesn't.

To make things even better, Bob left on Friday to go and spend some time with his brothers. He came back Saturday evening (and in my opinion, his arrival could not come soon enough). Preceding his arrival, Payton had given me about 2 hours full of just plain screaming. It was becoming very obvious that her ability to cope with things being different was reaching an end and I was about ready to pull my hair out. It's sad because it is always good for us to get away but we always feel guilty leaving the other spouse behind because we know what they're trying to deal with. I know Bob had a good time, but I also know his thoughts are always at home and wondering if everything is going okay. I hate that for him, but again, am hopeful that as time goes on, payton will do better with this. I know it's so hard for people to understand, but this is why we generally stay home in our protected bubble and choose not to deal with the meltdowns. Things are hard enough as it is, but to try and do the 'extras'......it can easily ruin our week or weekend. And, it really just isn't fair to Payton because she just can't settle herself down for some reason.

Tomorrow Koen gets his tubes put back in. We are so excited to get this done. I know it's not a cure all, but he'll feel better and not get so many infections, so it'll be nice. I get to spend the day with him tomorrow and get some one on one time, so I'm excited for that as well. He is such a little cuddle bug :)

Pics.....

2009-05-26T15:57:00.001-05:00

Connection

2009-05-23T23:28:00.002-05:00

One thing I love about having all of the ws family blogs is knowing that we've all got such a connection. Nancy recently wrote a post that I could immediately connect with. (check it out here). I remember as a new mom going thru the exact same things Nancy went thru and being so incredibly exhausted and wondering why in the world I just wasn't cutting it as a mom. Our lives are so much better now because of Payton's ability to communicate....although we still have some really BAD days, I would not ever want to go back to the dark days we used to have.

Payton's summer has started out well. We tried t-ball, but have already quit. The anxiety she had before the game and actually just being able to process it all once she got there was too much for her. She said she just wants to play at home. And, that's fine with me. I have to remind myself a lot that her brain processes things so differently. While Bob, Koen and I might process everything at once, Payton is apt to try to process it all night and into the next day. I'm hoping when she gets older when can find something she's interested in special olympics.

Prolapse seems to be be Payton's biggest issue right now. Unfortunately I pretty much can't leave her alone right now because she loves to run to the bathroom and try to pull out the prolapse - which is hard to see her doing and difficult to make her understand how yucky it is. We went to a family get together this weekend and while everyone spent most of their time outside, Payton and I spent our time inside. She still prefers to do things by herself most of the time and doesn't really enjoy playing much. She just likes to do her own thing. Therefore, I just stay inside with her because I know what she's capable of if left alone for more than a few seconds :) Sometimes I wonder why Payton and I even go when we're spending a majority of the time in a different area than everyone else, but I have to consider it an improvement because in the past we usually didn't even attempt to go because she couldn't handle it. She can now, and that feels really good.

Koen just started another antibiotic for his ears and we are on a countdown to get his tubes put back in. It'll be nice for him to get that done. He gets pretty fussy but I really can't complain. Considering how he feels, he's still a pretty darn good little boy. He cracks me up because Payton has recently started having me cut every tag out of all of her clothings. She HATES tags (this is a new aversion) and guess who else immediately grabs his tag when I put his shirt on. Yep - you guessed it! Koen. He grabs a hold of the tag and says "ow, ow, ow" until we cut it out. I love how he watches her and wants to be like her. (don't like it with the meltdowns and tantrums....but I do believe we are getting that under control with him - even at the age of two I think he is able to see that she just can't control it). When we leave some where and she has to say goodbye to someone and is ofcourse screaming and crying, he just sits in the car and looks at me, like "here she goes again". I love that little man and already feel like I'm sensing some compassion in him. Oh, how I pray he has compassion.

T-Ball

2009-05-19T11:49:00.002-05:00

The first night....not so great. But, we're sticking with it. The first twenty minutes she was very very upset...crying pretty hard (and for those who know her, LOUD!). Her teammates were patting her on the back and encouraging her, which is so cute when they're five and six years old :) She got calmed down and spent the next 20 minutes sitting in the bleachers just watching the game. Bob and I get tickled because everyone seems to know Payton and most of them we don't know....we just laugh and say "who was that?" and thankfully they were all rooting for her. Becuase of all the encouragement and attention, she put herself out on the field for the last twenty minutes and hung in there! Now, you never know where you may see her (for instance, she likes to just walk up to the batters and tell them 'hello' instead of staying out in the field to try and catch the ball) and she also likes to just walk up to her teammates in the field and strike up a conversation...so she's all over the place. It really felt good to hear everyone encouraging her and cheering her on when she finally got out there. I think everyone was proud of her - and I think the next game, she might just start out playing with no meltdown. If not, that's ok. She did it, and that's all I can ask for.

Really good weekend

2009-05-18T11:38:00.003-05:00

We had a really good weekend. The weather couldn't have been nicer and the kids played so well together on Saturday evening. Typically the kids don't play together - Koen enjoys toys and Payton really doesn't 'play'. So, to see them running and laughing and playing together really did our hearts good! There's nothing better than hearing children laugh.

I recently made my blog private, for a couple of reasons. One reason was because I use this blog as an outlet and if there's ever a time I feel the need to vent about anything going on at the school, I wanted to be free to do that and not take the chance of someone from the school system reading it and then taking it out on Payton or being frustrated with Bob and I. The other reason was because after seeing and reading several things on pedophiles and trying to go with the 'expert' advice, I didn't want my children's pictures to possibly be open to just anyone, but because some family and friends were having trouble getting logged in I've made it public again. I definitely want our family and friends to be able to read the blog because I think it helps them understand Payton more and keep up with everything that is going on with the kids.....

Payton has her first t-ball game tonight and she seems to be excited about it. The practices haven't gone the best, a lot of the time she ends up just sitting with me and I'm okay with that. My guess is she will do differently in the game because as she says "people will clap for me!" and she enjoys people cheering her on. We're excited to see how she does but certainly do not have our hopes up.

Wednesday I take her back to the nephrologist in KC and am actually looking forward to this appointment. I'm sure she will not cooperate with them, but it's been over a month since we've seen this doctor and it will be nice to get some more information from him instead of just talking to the nurse over the phone (who can not for the life of her keep Payton and Abi straight!).

Koen just got off of his antibiotic and right now we're just floating thru til he gets his tubes fixed in June. They've switched his allergy/asthma medicine and I can see a difference in him. I feel bad/guilty saying it, but I find it so much easier to deal with his allergies and asthma than I do all of Payton's issues. I feel so blessed to have him healthy and happy - and running around like a mad man. He is so much fun and really very easy going. He LOVES being outside and playing with anything that involves a ball. Actually, he sleeps with two baseballs at night (one in each hand). And, if he wakes up, he darn better be able to find them or he's not a happy camper. I love it! It's kind of crazy because I feel like I've had two 'first' children....Payton was my first child, obviously, but now Koen feels like a first child because I am seeing what it's like to raise a typical child. It is absolutely nothing short of amazing. He understands what I'm saying (sometimes even better than Payton)! Although there is a three year age difference, the gap is shrinking very quickly and many times Bob and I feel like we have twins (except that we feel Koen has surpassed Payton with his ability to control his emotions, Payton can still cry for hours and many times if she is disciplined, the day is pretty much shot - which stinks!). It's a work in process, and a tough one at that.

Sleep has been incredible this past week. Payton even slept two nights straight thru (woah!) and Koen does amazingly well when he doesn't have his ear infections. Bob and my frame of mind changes so much when we get a good night's sleep. It's amazing what it does for our family. I pray these restful nights continue and thank God for sleep. For so long I was afraid to go to sleep because I really was afraid that I would not wake up (we were so sleep deprived it felt like we were going to die!) but this week that has not been the case. What a blessing!!!

Preschool Graduation Video

2009-05-15T15:11:00.006-05:00

Beautiful Post

2009-05-14T09:13:00.002-05:00

Please read the post Louie's mom just put on her blog. AMAZING.
Click Here

Payton's preschool graduation

2009-05-13T16:21:00.004-05:00

Payton's graduation went great! I'll have a video to put on here later, but for now I've got a couple of pics. She was the usual ham and had a great time. She can really put on a show when it comes to music - she gets so excited she can't contain herself. I love it!

I got so tickled at her because when they announced what each child wanted to be when they grow up, the typical answer was "a ballerina" or "a vet" or "a fireman"....but not Payton! As would be typical ws, she told a story :) She wants to be a fireman who rides in the truck, sprays water out of the house, and helps people in the fire". Let me be the first to say I was shocked at how descriptive she was.....and wondering where in the world she got the idea of a fireman. Must be the obsession with the fire alarm or something. Anyways, I'm so proud of how well she did with all the people there. She's such a joy to watch.

Transition Meeting

2009-05-11T15:51:00.004-05:00

Today was our transition meeting for sending Payton on to kindergarten. There wasn't really any suprises and I really think Payton is going to enjoy kindergarten. It's already very apparent to the therapists and her teachers that noises are Payton's biggest enemy - what she's most afraid of, what keeps her so easily distracted, etc. They've taken notes and are going to watch her carefully in the lunch room, restroom, hallways, etc - anywhere there is extra noise. Everyone has figured out that once she has an issue with a noise (sees a vacuum cleaner, etc) the day is pretty much shot because she won't be able to think about anything else. Although I hate it for Payton, it is nice to know that she's not just doing it to me....cause like Bob says - sometimes it feels like people just don't believe us.

I feel nervous and excited all rolled into one. It's three months away, but I still worry about the little things. But, being the social bug that she is - she will LOVE being with everyone. The thing that shocked me the most is that her teacher said it is not unusual for Payton to hit other children (which, I understand most kids do go thru a phase of hitting.....Payton's just never stopped). They said she's never hit a teacher (thankfully - because she can sure smack me when she gets mad), but she will hit other students when they have something she wants or they get in her way. I think that's where the inability to control herself comes in. She knows better, but really can't stop herself.

Another thing the therapists mentioned is how often Payton goes to the bathroom. They wanted her kindergarten teacher to know that while she may ask every 10 minutes to go to the bathroom, she actually does have to go. She's not trying to get out of doing something. Which, again, I'm thankful they pass the information on because I can see how it would look like she's trying to just leave the classroom for a break.

Anyways, to make a long story short, after meeting with the special ed teacher, the secretary, and the principal, I feel good about her starting school. Tomorrow evening is preschool graduation. Payton cannot wait because everyone is going to clap for her! She was up from 12am-5am this morning talking about it (a little bit obsessive, heh?) but I can take that any day over crying. So-I'm just going to be excited with her! I'll be sure and post some pics!

Pics

2009-04-28T22:26:00.004-05:00

I'm out of town on a business trip this week and Bob just sent me these pics of the kids. Man, I miss them so much!!! Only a day and a half more and I'm back home with them....I can NOT wait. Bob said the kids seem to be doing just fine with me being gone - and Payton is getting to spend the night at my mom's (there's no way Bob could take care of both at night....because if Payton gets up, one of us usually needs to be with Koen because Payton screams loud enough it scares Koen to death). So, I think at bedtime Payton is enjoying some time with grandma and Koen is enjoying some one on one with Daddy.

Koen has an appointment with the ENT on Thursday. His ear has been draining and he's running a fever thru the night. I'm guessing we'll need to get that tube put back in. Easy little surgery, though, so I definitely will not complain.

I've not been home to take Payton's BP and haven't asked Bob about it - so I wouldn't worry about it while I was gone....so far it doesn't look like the increase has done much for her. Sadly, my BP is lower than Payton's. She goes back to KC the middle of May, so it will be nice to see the doc face to face instead of trying to talk over the phone.

That's all that is going on here! Last weekend we went to my nephew's ball tournament (which he got 1st place!) and had a great time. Payton pretty much greeted everyone there, smacked some strangers on the butt (yeah, that was great), and made herself at home. She had a blast! Koen enjoyed it too - he loves anything that has a 'ball' in it....I have a feeling he will look up to Tanner. I'm so excited for the weather to stay warm so the kids can be outside.....the evenings go so much smoother when we can get outside!

Tough Times

2009-04-17T16:11:00.002-05:00

I'm not sure why, but Bob and I both have been having a really difficult time lately. There's so many things we're struggling with lately. One big issue is how in the world to teach our two year old son that because he sees Payton behaving a certain way does not mean it's the correct way to act or react. I know everyone says to raise your special needs child the same as you would your typical child. I get that. The problem is, Payton has absolutley no self control.

Last night we took Payton to her first t-ball practice. Bob and I were both excited and even Payton was excited. The ball field she practiced on is pretty much right next to the train tracks. Payton is obsessed with trains, but when it's that close, the noise can be way too much for her. The first train came by and Bob was out on the field with her and was able to grab her and cover her ears, so that went ok. I get tickled at Payton because she has no focus, so it is very typical of her to just wander off and do her own thing. I expected that, and she did wander, but Bob was able to redirect her back to the field. For a good ten minutes (quite an accomplishment in our world!). After that ten minutes, Payton ran over to me and decided she was going to go play in the park (she was using the excuse of needing to go potty, but because she still doesn't quite know how to cover her tracks she blurted out she wanted to go play in the park). I explained to her that we were here to play t-ball and she would not be going to the park. So, she stiffens her arms down and screams at the top of her lungs. Embarassing, of course, but even much more so when my two year old son decides he will mimic her and return the scream and stiffen himself. He wants to be just like Payton (what little brother doesn't?) but that is unfortunately bringing a lot of bad behavior from him. He sees her meltdowns, feels the stress in the home, I feel sad for him having to see/feel all of this. I know when he's older I will be able to explain more of this to him, but for now, he see it and thinks it is okay to follow exactly what she is doing.

I ended up taking Koen home and leaving Bob to try and keep Payton focused. I guess in the next five minutes another train came by and Bob said that topped her off and she was in complete meltdown mode. He explained to the coach's wife that she had williams syndrome and that we would try one more practice and see how it goes but that these meltdowns are really not unusual for her. The coach's wife was extremely nice about it, but I feel once again sad over this. I think I get my hopes up thinking this is going to be an opportunity for us to be able to get involved, meet other parents, etc and the fact is it's just not going to happen this way. We feel alienated again. I'm sure this seems so selfish, but I just want to see her able to make friends, able to cope, able to control herself, and able to participate in things.

At work I hear my co-workers talking about taking their family places, going out to eat, taking their kids to movies, etc and I want that so badly for my family. Payton is getting better, but it is still hard to go places because we have to wonder any time we take her if she's going to melt down....and once she hits it, you can't pull her out (as you all know). Is it ok if Payton doesn't play t-ball? Absolutely. But it still feels like it's just another time that we've tried something, had our hopes up, and are again just stuck at home.

I don't know why Bob and I are having such a tough time right now - it may be the mix of frustration over her behavior and that we're still struggling getting her blood pressure under control (yesterday it was 140/80)....but for some reason, we're having trouble coping. The doctor yesterday did increase her anxiety medicine and in the next week we'll look at increasing her blood pressure medicine again. I think we want people to tell us this is going to get easier, but I am guessing it's just different milestones/experiences that you miss as they get older that really bring you to your knees?

Private

2009-04-17T13:05:00.001-05:00

I decided to go ahead and make my blog private.....if you know of any one that reads the blog that would like to have permisson and I somehow missed sending them an email, let me know!

Just a quick update

2009-04-15T09:57:00.003-05:00

Things have been kind of a blur around here lately - neither of the kids have been sleeping well and it was getting to the point Bob and I weren't sure what to do with Koen. We KNOW he can sleep, but he's been getting up around every 30 -45 minutes. So, off to the doctor we went. Double ear infection - with one of his tubes still in his ear, but dislodged and not doing any good. We should've known, because like I said, he can sleep good if he feels good. So - not sure if he'll have to have that little procedure done again. We're waiting to see if he starts up his frequent ear infections again and if so, we'll get the tube fixed. Suprisingly, Payton ended up with an ear infection too (it'd been a while since she had one), but her tubes were still in place and the antibiotic cleared it right up.

We're still messing with Payton's blood pressure trying to get the right dosage. Yesterday was a very good day for her and it was encouraging to think we may have just hit the right dose. We'll see how the next two weeks go and then we'll know for sure.

The kids had a really good Easter. Payton and I had to sit outside of the church service because it was so loud, but Bob really enjoyed it. Payton is still enjoying hiding easter eggs and going on egg hunts. Koen picked up on it really fast about finding those eggs. Payton's also started enjoying playing UNO. We don't follow the game exactly, but I figure it's good for her with the colors and numbers and trying to follow directions. She's picked up on it really well and loves it when all of her cards are gone and she wins!

Tomorrow I take Payton to KC to the doctor. I'm looking forward to getting some extra time with her, even if it is going to the doctor. I really can't put into words how completely different Payton is when her blood pressure is in the normal range (typically in the morning). As Bob says, she's just a princess.

Here's some pics:

2009-04-13T15:11:00.001-05:00

Correlation

2009-04-07T21:22:00.002-05:00

One thing is for sure, Bob and I have noticed a direct correlation between Payton's blood pressure and her behavior. When her blood pressure is lower she is definitely a calm little girl. This tends to be in the morning after she's taken her first dose of bp meds. Sure enough when her blood pressure goes up, she becomes angry and almost monstrous.

It feels fantastic to know and feel why all along she has been such a temperamental little girl. I've always tried to be patient with her, feeling that so much of her behavior issues were anxiety (and I still believe a lot of it was) but to add the blood pressure on top of it really created a lot of problems for her behavior wise. Even Bob said he looks at her behavior and outbursts different now because he knows it's her blood pressure. I'm just guessing here, but I imagine the celexa probably brought her blood pressure down some when she started it because it relieved her anxiety.

One thing I am struggling with is knowing that she more than likely has had high blood pressure since birth. Because of her sensory issues and nonstop crying, we were never able to get a reading on her. Her heart has had to work harder because of the high blood pressure and caused her to have an enlarged heart. It breaks our hearts to know that she really wasn't feeling well and we just didn't know it. Payton's gone to bed the past two nights at 7:30 and is just exhausted. She has been complaining of headaches and grabbing her head screaming, which still terrifies me. Tomorrow I call the doctor again to talk about increasing it again to see if we can get it down some. It's still running about 127/81 for now. It will seem really strange if we get it to the 90/50 range!

Music

2009-03-30T15:11:00.002-05:00

The past few weeks I've started to notice Payton enjoying music. She's always liked music - but now, she asks to listen to music and absolutely enjoys it. And-I'm loving it! At church yesterday they had a bluegrass band that played and sang songs. Payton clapped, smiled, and sang to her hearts content. She doesn't really sing on key yet, but she's getting there!

This weekend we went to Payton's cousin's birthday party. Faith turns six in a couple of days and it was a Hannah Montana party. They ofcourse had music playing and Payton got to dance, jump around, etc. She LOVED it. There was a girl there who was about to turn three and Payton really enjoyed playing with her. I've noticed that Payton seems to really get along with children who are around three years of age - seems to be around her developmental level I guess? It seems her delays are between 18 month to two years, so it was nice to see Payton playing with her.

It was a three hour trip to get to Faith's house - and Payton did fairly well with the drive. However, she is suprisingly still TERRIFIED of windshield wipers. I used to try and schedule our trips around rain. As a matter of fact, if rain was in the forecast, we'd pretty much cancel our trip. She had started to do better with the windshield wipers, but for some reason this little fear popped back up (ofcourse, it's been a while since we've had a good rain!). That poor little girl screamed and shook (and ofcourse that terrified Koen), but we were able to stop and buy some Rain-X and fix the problem....although everyone's nerves in the car gets jostled pretty quickly when you have someone that scared. When we pulled into the driveway when we got home Payton said "Thank you daddy for not using the windshield wipers. No more windshield wipers." This is a HUGE step up for her. In the past, we would've traveled the entire way with screaming, shaking, and crying because she would not be able to get over the anxiety of the windshield wipers possibly being used. This time, she could comprehend that we bought the Rain-X and daddy would not have to use the wipers at all. Although it seems like a small step, it was HUGE for us. I'm so thankful for every improvement we see in receptive hearing!

Dosage Increase

2009-03-25T16:04:00.003-05:00

I heard back from the nephrologist today and they are going to try another increase in Payton's BP med. Slowly but surely I'm sure we'll figure out the right dose for her. I know it is a path you all have walked before, it just makes me worry until we have everything figured out. Thanks for everyone's support and prayers. It really means a lot to me.

2009-03-24T13:42:00.003-05:00

The school called today. Payton's been complaining of headaches. It's either her eyes hurt or her head hurts. I don't really know how to describe how I feel....helpless, tired, emotional, sad. They took her to the nurse and her bp was high. You know - if I could keep her with me every second of the day and shelter her and protect her, I would. Although I am at the point that I'm ready to make some more changes in our life for her. Right now, we're waiting until we feel exactly where God is leading us.

Bob had a car accident today. He was on the interstate. The truck looks awful and I feel so incredibly thankful that he's still with us! Shoot, he didn't even have to go to the hospital. His neck hurts, but that's about it. I'm sure tomorrow and the next day he'll be pretty sore. Honestly - I'm not sure how in the world I could juggle everything with Payton without him.

Here's some new pics of my little man - although he's not so little anymore! He's quickly catching up to Payton! :)

2009-03-23T13:50:00.000-05:00

Stumped

2009-03-20T08:18:00.002-05:00

Payton's blood pressure has me stumped. I know they said it would take a full two weeks before knowing whether the dosage increase has helped it go down, but it's still running around 125/75-really not far from the 135/80 they don't want it reaching. When I started having blood pressure problems, all they had to give me was a water pill and it worked wonders for me (I'm sure mine was just stress related though). I really never thought we'd have any trouble getting her blood pressure to go down....it has me stumped and makes me nervous.

Woohoo-sleep is back!

2009-03-18T12:03:00.002-05:00

Last night Payton slept great. She hasn't slept but maybe a couple of hours a night since last Thursday. The whole train ride got her out of whack....but she did fantastic last night. And, I immediately notice a difference in my 'frame of mind' once I get some good sleep.

Yesterday, Payton went to the ENT. She positioned herself directly in front of the door as people walked in and managed to make herself the greeter. Anyone who walked in the door was greeted with a "Hello!" or "Hi, my name's Payton!" or of course "This is my mom!". Once we got back there, the nurse said to her "Payton, you do know you're my favorite, don't you?". She told her that the last time we were there and I'm always shocked at that. Payton can be a charmer, but usually at doctor appointments she screams bloody murder. However, at this office, she loves it cause all they have to do is look in her ears so she is relaxed and just happy to be there.

This morning she had to have three shots. She suprised me and did pretty well with those. Once they were done, my mom took her to her favorite place to eat (Denny's) and she rounded the morning off with her grilled cheese sandwich (which is what she would like to eat for every meal).

It's spring break week. The weather has been PERFECT and we got some sleep last night. Can't ask for more than that!

1st Train Ride

2009-03-16T13:09:00.005-05:00

The kids had such a great time on Saturday. Payton did FANTASTIC. The only thing lost was sleep (if her routine changes or she is anxious, sleep is usually what is affected most). We're all still recovering from that, ofcourse, but the greatest thing was that her behavior wasn't affected. Generally in the past, her behavior becomes awful when her routine has changed or she is anxious. It was wonderful this time......and made us think we might try taking her to "Dora, Live" this summer. Not only does she love Dora - but my son does too......so I think they both would have a ball. Here's some pics from our little train ride. I think pretty much every one on the train 'had' to speak to Payton. She loved saying "Hi Conductor!" and insisted on showing everyone her ticket that got her on the train. She continues to make me come out of my shell :)

(Payton waving to a stranger :)

Blood Pressure

2009-03-12T10:14:00.002-05:00

Yesterday I got in touch with the nephrologist's nurse and they are increasing Payton's blood pressure meds to twice a day instead of just once a day. It was still running high (some times during the day, extremely high), so hopefully the extra dose will help keep it down. We should know in about two weeks how it's working for her. And, ofcourse, the lab at our hospital never got all of the results back to the nephrologist, so I called the hospital today and they should be faxing the results back to her doctor. I'm not really expecting anything from the bloodwork....I'm guessing it's just related to the narrowing.

This weekend we are taking the kids to Branson to ride the train. As awful as it sounds, we never go anywhere unless we are traveling to see family or going to the doctor. The anxiety it causes Payton has just not been worth it. Because the celexa has seemed to help her calm down, we are going to give it a shot. I am hoping and praying the trip goes well and that she is able to enjoy herself (I know Koen will) because if it goes anything like our last KY trip, I predict another few years before we try again :) I still have nightmares over that KY trip! I'll update when I get back to let you know how it went - with lots of pictures, I'm sure!

Kindergarten

2009-03-11T09:11:00.002-05:00

Yesterday I registered Payton for kindergarten. She hasn't had her screening yet, but we meet with her pre-k teachers on the 25th for an exit conference. When I went to the office, I wasn't sure who I needed to talk to about the possibility of Payton having a para. I feel like she needs one, but wasn't sure what the school's response or thinking would be. They told me I would need to meet with the principal and discuss it with him, but come to find out after speaking with her preschool teacher, she has already recommended Payton have an aide. Can I tell you what a relief this is for me? Because we're just entering the school system, I wasn't sure if this was something I would have to fight for. Payton's preschool teacher had already met with the special ed dept in the elementary school and recommended Payton have an aide to help her stay on task (for instance, when it's story time or time to work on something, Payton just gets up and walks off....she just doesn't focus well or sit still well). Focusing is Payton's biggest problem and I firmly believe an aide will help her keep on track and can even explain things to her that the teacher says (directions, for instance) but Payton may not understand. Ofcourse I also think of the little things, such as using the restroom, carrying her tray in the lunchroom, etc. Whew - definitely an answer to prayer!

Happy '30' Bob!

2009-03-10T08:22:00.003-05:00

Today is Bob's birthday. It's hard to put into words how I feel about this man. I'm sure it goes without saying anything at all, though. To a man who gives everything he has to everyone....his time, his energy, his love.....and never expects anything in return. And the most amazing father in the world. Happy 30th Birthday, Bob. We love you.

Koen's Birthday

2009-03-05T10:43:00.003-06:00

We love you, Koen! And as Payton would say, "Happy Birthday, Bubs!"

Just an Update

2009-03-02T13:34:00.006-06:00

My nerves have settled down quite a bit after getting Payton on her BP medicine. She loves the taste of it (they flavored it tutti frutti) and always asks if she can take it. Ofcourse, since she still likes cat food it shouldn't suprise me that she enjoys the taste of almost anything. Her blood pressure is on an average around 122/72 and once she's been on the medication for two weeks, if it's still running this high, they'll go ahead and up the dosage to try and get it closer to the 90/50 range. This morning it was 124/100 so I didn't send her to preschool. It was very obvious (due to her yelling at me all thru the night in her sleep) that she was just 'off' and it was more than likely just because her routine was off that she was having trouble. After today, she should be just fine. I don't know if it was right to keep her from preschool....I guess I will live and learn as we go along.

This weekend we went to Springfield to celebrate Koen's 2nd birthday with Bob's family. I can't believe he's going to turn two this week. He has definitely hit the 'terrible' two stage - but in a different way than Payton. I don't know that Payton's ever was terrible two's...Nancy describes it best in her post today. For some reason, most of Payton's behavior I'm afraid will last even into adulthood. Koen's - I know he can learn from discpline. Koen just likes to climb things, run like crazy, and play 24/7. He is quite the monkey and seems to have that little boy 'destruction' in him. In the same breath, he LOVES to read and loves to be held and cuddled (on his timing, not ours!). He still takes my breath away and it has been such a joy watching him develop and grow. On my days off, I always find it amazing that while Payton is gone to preschool I can actually get some things done. I've never realized before how she requires my attention nearly 24/7, but with Koen, he goes off and plays and I can sweep the floors, clean the bathroom, etc. Don't get me wrong. It's not the same when she's not there, I just don't think I realized how much I can get done with a typical child.

This past weekend we were walking down the steps in the garage. Payton still doesn't trust herself on steps and likes to hold my hand. Usually, I'll hold Koen's hand and walk him down, and then grab Payton's hand to help her down. This time, Koen went ahead of me and decided to try by himself. This thrilled me....but unfortunately he landed smack on his head. (He always has a knot on one side of his head.....). Ofcourse, the next night he was staying with my mom while Bob and I went birthday shopping (Payton couldn't stand leaving her gma Wanda after the birthday party, so she stayed the night with her) and wouldn't you know, Bob and I got a call from my parents saying they were taking Koen to the emergency room. That silly little boy ran smack into the corner of a cabinet. He was fine....but as you can see from the picture below had one heck of a knot on his head.

Anyways, I just wanted to update on my kiddos and especially Payton's blood pressure. For the past couple of months, her color just really hadn't looked well and she really looks back to herself. Her eyes are not so purple/red around them - she looked like a raccoon for almost two months and I just couldn't figure it out. She looks healthy again and seems to be feeling a lot better. I can't imagine how good she'll feel when we get the blood pressure to the 90/50.

Nerves

2009-02-19T13:45:00.003-06:00

I've been kind of nervous the past few days because of Payton's BP. I'm supposed to take her in for lab work today and start the blood pressure medicine this evening. I asked the nurse when I should start to worry and call them and they said any time her reading is above 130/85. Unfortunately when the sitter called today her blood pressure was 132/104. The sitter said when she sat Payton in the chair, her eyes just looked kind of glazed over and she kept repeating the same thing over and over and over in a quiet voice (which Payton doesn't do - usually when she's saying something over and over she talks LOUD and it's because she's excited). Anyways, the sitter said that kind of bothered her and when she got the first reading it was 132/104. She was hoping it was wrong, so took it on the other arm and sure enough it was that high. The nurse said when she's on the medicine they would like to see it in the 90/50 range, so I'm hopeful that's right where she'll be. Unfortunately, we don't have a pharmacy in town who has the medicine, so we have to travel about 45 minutes to get it. But, if it makes her feel better, it's worth it!

About three weeks ago I had been concerned about Payton. It was my Friday off and Payton had an AWFUL day. My mom stopped by to help me out for an hour (it had been a long time since Payton had been so 'abusive' but that day I needed help and am never afraid to call my mom or sisters for help (and if my mother in law lived closer, I'd feel comfortable enough to call her too). Thankfully, I've been blessed with some women in my life who have really been there for me when I needed them! :) Anyways, I thought at that point it could possibly be blood pressure, but wasn't sure. My mom offered to keep Payton that night and I almost hesitated because I felt it was to the point she was almost acting like it was high enough she could have a stroke (I was extremely nervous but didn't share it with anyone except Bob cause I always have a fear someone will think I'm a looney). The past few weeks haven't been nearly as bad as what that one week/weekend was, but it still makes me feel bad for her....and ofcourse thankful nothing serious happened.

For now, I'm so incredibly thankful Payton succeeded in letting us take her blood pressure....and also very thankful we all live in a time where they have medicine that can help. I know many people would say "it's just blood pressure" but is it okay to feel so sad over this? I'm pretty emotional over it and ready for the weekend.

She keeps on impressing me!

2009-02-18T08:53:00.002-06:00

Well, this morning Payton wanted to take her blood pressure with the automatic machine. She calls it the "white one". The cuff for the manual one is black and the automatic one is white. Ofcourse lately she's been saying she wants a red one. Can you tell she's obsessed with it now? The other evening she wouldn't go outside and play unless she got to take the cuff out with her. She cracks me up. Actually, it's amazing to me. Two weeks ago she would go crazy anytime she saw the cuff - now, she welcomes it. She doesn't get worked up at all and just sits there patiently. This morning when she woke up it was 137/77. Looking at the BP chart for her age, weight, height it should be around 91/52. And, we've managed to be blessed with a babysitter who used to be a nurse's aid and can take Payton's blood pressure at different times during the day so we can give her doctor an idea what it's doing throughout the day.

What can I say? I'm proud of our little girl for being able to relax and have her blood pressure taken calmly.

Payton got her Denny's

2009-02-16T21:52:00.003-06:00

Payton's favorite place in the world to eat is Denny's. I'm not real sure why, she always just gets her grilled cheese sandwich and fruit, but that's where she always wants to go. We made a promise to her that if she let us take her blood pressure, we'd take her to Denny's, but until then....no Denny's. Well, she finally let us take it (with the manual one, ofcourse. The automatic one scares her to death). It is elevated (which is what my gut has told me for about a month or so because of her headaches, her irritability, tiredness, and even complaining of her eyes hurting). I called Noel (my expert) and talked to her for a bit.....and will just go ahead and call her cardiologist tomorrow. The good news is that her kidneys looked great!

Sunday, I took Payton skating. I was exhausted by the time we left, but she had a great time. I dont' know how many times I picked her up off the floot(she held onto the wall and to my hand) but she loved every second of it. And she has bruises all over her legs and bottom to prove it! Her cousins Laney, Ellie and Brianna went too - so Payton thought it was the best party ever. I'll try and post some pictures of it soon.

On a side note, we really feel like we can see a difference in Koen after taking him off of the milk. He's eating better (which you could never really tell he didn't eat well cause he's just a little butterball) and he is just 'himself'. He's talking more, seems to be hearing more, and sleeping really well. Silly me had no idea a milk allergy could cause ear infections. Hopefully this will take care of them for good. The other evening I was at my folk's house and he was off in the playroom by himself. Wouldn't you know, we found him standing on top of the dresser. Ofcourse, part of me had to be proud of him because Payton still would not be able to figure out (problem-solve) how to get up there and even if she could, heights are really not her thing. So, as the outside of me was scolding him about climbing up there, the inside of me was saying "nice job Koen!".

Payton to KC

2009-02-10T09:30:00.002-06:00

I just got a call from Bob....Payton had her test this morning on her kidneys (which I'm sure all is fine because they didn't have to go see the doc immediately after). They had to leave at 5:30 this morning, so we assumed she would sleep the whole way and it would be a peaceful drive. What were we thinking?! He said he put her in the car and she looked at him and said "GREAT JOB being quiet daddy!" That's pretty much our little girl....she bounced right up ready to go :)

Yesterday I called Koen's ENT because he had another ear infection and she said they had the results back on his allergy. He's allergic to milk! Never would've guessed that. But, glad we now know and can keep him off of milk. Which, after Payton's hypercalcemia, it should be an easy adjustment for us. I'm just glad to know why he kept getting the silly ear infections.

This past weekend Payton and I took a trip to Harrisonville to visit Abi and Noel. We had such a great time! I've got some pictures I'll post later - they really are two peas in a pod. And, I'm also very envious because I saw Abi's ABA therapy book and I really wish I could find a behavior therapist to do that well with Payton. We recently tried the weighted blanket (Payton's been having some absolutely awful days) but she hated the weighted blanket. We'll just keep trying different things.....for now, a blanket heated in the dryer and then wrapped tightly around her seems to be doing really well. You can almost see her face instantly relax. But I am so thankful I got to spend the day with Noel. I swear she is like a breath of fresh air :)

Beautiful Post by Louie's Mom

2009-02-03T19:10:00.001-06:00

Click here

Nephrology

2009-02-03T15:25:00.003-06:00

Yesterday was Payton's appointment with nephrology. Just thinking about it makes me get tensed up. Just the sight of a blood pressure cuff scares her to death. I really don't think it's the noise - manual or electronic. She's in the room when I take mine or even when I've taken Koen's to show her it doesn't hurt. Anyways, to make a long story short they were unable to get a BP on her. They've never gotten a BP on her. I've never been concerned about it before, but the past three weeks have been awful. She's been complaining of headaches, she's actually been sleeping (even going to bed at 7pm), and she has been a mess. Crying, temperamental, explosive, etc. Bob mentioned last night that it feels like we've gone backwards about a year (before we started the celexa). I've upped the dosage to see if she had grown enough that we needed an increase, but it didn't change a thing. It's not that you 'forget' what it's like when your life is so stressful dealing with a child who is so extremely explosive, angry, and abusive....I guess you just push it as far back in your mind as possible. Well, here we are again, and it feels just plain awful.

Next Tuesday she goes back to KC to have an ultrasound done on her kidneys, check her renal arteries, etc. She'll fight it, but she'll do okay - they'll atleast be able to get it done. They told me to try to take her BP while she's asleep - but I don't know that they understand the sensory issues she has with the cuff being around her arm or leg (she doesn't really like bracelets or anything around her wrists, you can always tell it really bothers her). Payton really caught the nurses and the doctor off guard by how upset and agitated she was. And, the trip on the way home was ofcourse full of hits, yells, aggravation. Which, is another concern of mine. How in the world do I teach my two year old son that this behavior he is seeing from his sister is not appropriate and is not acceptable from him? He sees Payton getting in trouble for it - but when she's aggressive, he becomes a different little guy too. I don't want my house to feel that way - for my family or for guests. I'm starting to feel 'stuck' again and I don't want it to be like this. I'd love it if the docs were able to give us some answers (if it is her BP giving her problems) but for now, if she won't cooperate, it's hard to know. I really really just want to see her back to the way she was a few months ago.

Snow

2009-01-28T10:24:00.003-06:00

Payton was ecstatic yesterday because we finally got a good snow. She LOVES snow and has probably eaten about three bowls of it. This is the first time Koen has seen the snow and he is loving it too. They both bundled up, got their boots on, and went outside to play with daddy for a while.

Koen's surgery went great on Monday. I don't think I could ever be thankful enough for such an easy-going little guy. I'm so used to Payton getting so aggravated and upset anytime the nurses or doctors touch her (with the stethoscope, thermometer, etc) that it amazes me when the nurses do everything and Koen just sits there willingly. They didn't give him any medicine to make him dopey before he left us, so when the nurse came up and said she was going to have to upset him and take him for surgery, I was shocked because he just reached for her and left with her. Didn't even look back. Who would've dreamed he would've been that good about it. He was quite the bear all day from the anesthetic, but he just did great. She said his adenoids were huge and that if he would've been a bit older she would've gone ahead and taken his tonsils cause they looked like they needed to come out, but I'm hoping when we get the results from the allergy testing in a couple of weeks that we can just keep him away from whatever he's allergic to and it will take care of it.

On the way to Koen's surgery, there was a train going along side the highway. It was still dark, so the big bright light in the front of the train was shining right at us. I immediately got a big smile on my face. Payton has loved trains for about three years. I swear I can feel the energy off of her when she sees one. She screams at the top of her lungs and it's like electricity shoots out her fingers and toes. I never dreamed just seeing a train - even when by myself - would bring a smile to my face. It immediately makes me think of the joy it brings Payton.

Now that Koen had his surgery and will hopefully start feeling better, I think Payton might get back to herself. She sure has been feeding off of Koen not feeling well, being fussy, and needing us more than usual. Last night she cried for about three hours because I didn't get her out of the car. I still can't believe that got her so upset (Bob got her out of the car instead of me and it really laid havoc on the night???). So, I am very hopeful that she'll get back to herself. She is such a sweetie and I feel for her that it doesn't take much to throw her off. But, the gazillion kisses and hugs she gives me in one day (or the gazillion times she tells me I'm her best friend) totally makes up for it!

Does it get better?

2009-01-23T09:18:00.003-06:00

Lately I've felt like I have a five year old who is stuck in a two year old's body. She has been oh so emotional. Bob and I feel like she is just feeding off of Koen not feeling well (it's just ear infections and asthma, but he does get quite fussy) and it has really turned her end over end. She hates the nebulizer (too noisy) and really doesn't tolerate his 'needing' us. When I'm around other children her age, it's the maturity that gets me. There is a huge difference between her and them. Every night this week has just been crying and crying and crying. My mom is always very encouraging and frequently reminds me that God will get us through this, but it's weeks like this that really bring me to my knees and make me think. It's tough now, and she's just five years old. What will I do when she's twenty and her maturity is around age eight? Seriously, those with older children, how do you handle this?

I always feel like I am being judged for the way she behaves and I really struggle with it. She is so impulsive (typical ws) and really can't seem to stop herself. She knows better - but just can't stop herself. For instance, the other day I took five minutes to start a load of laundry, the next thing I know, my living room is covered with silverware and toilet paper is torn to pieces in the floor. She knows better. I'm sure many would not believe this, but Koen has already passed her in this aspect.

To be honest, I'm tired and sad. I want Payton to be able to 'handle' things and be able to control herself. I know every parent worries about their child's future, but for Payton, I really do. I can't do anything about it, so I don't know why I'm so worried about it. But I think I'm scared for all four of us in the family. It really is going to be tough to see your adult grown child in front of you that really is only developmentally/emotionally a child.

60th Anniversary

2009-01-21T14:51:00.002-06:00

60 years! And as you can tell from the picture above, they are still the happiest couple :) Truly an inspiration.

And, the pic below.....Payton and her PaPa Bill. She's obviously thrilled to be at that anniversary party!

YAY

2009-01-14T09:45:00.002-06:00

Koen is scheduled to have his adenoids removed and blood work done for allergies on Jan 26th and we cannot wait! That poor little guy has not had a good night's sleep since September and it's just been ear infection after ear infection (he's already got tubes). Although this has not held a candle to the nights with Payton, it will be nice to see him feeling good again and maybe (cross our fingers) get the household a good night's sleep :)

PS - I caught Payton eating cat food again. Please tell me she will outgrow this :) ha!

Kind of Blah

2009-01-09T09:13:00.003-06:00

It's hard to describe how I've been feeling for the past couple of weeks or so. I told my mom now that Payton's behavior is so much better, I feel like I realize how bad it really was. I think we had forgotten what it was like to have a 'normal' life (if there is such a thing as normal - but you know what I'm saying). I don't really feel bitter....or maybe I do. I don't know, I can't figure it out yet. I'm sure it's all just part of the process we go through. Even through the holidays, though, I noticed that when things were going so well and people were even noticing how wonderful Payton was doing handling things, it was hard for me to not want to just stand up and say "OK.....now that we feel like we somewhat have our life back, where in the heck were you when our family's life was crumbling?" Hmmmm, now that I read that, it pretty much sounds like anger and bitterness. Honestly, Bob and I are both struggling with those feelings and we are trying to work on it together. I ran across our wedding album the other day (after Payton pulled out all of our photo albums and started her destruction) and when I saw Bob and I, I thought, man, what happened to those two people? We feel like we've been stuffed in a bottle and just shaken for about five years. I think we just lost ourselves and now we're working on getting ourselves back.

Payton's done well getting back into the routine of school. Routines are still very important to her (not sure if that will be a life-long thing or if it gets better with age??). Last night we decided to take her to John Deere Day here in town. She and Koen love tractors and we really thought she would have a great time. Unfortunately, she's used to going home after we pick her up from Dawn's, so she was just 'off'. Koen loved it....Payton had meltdown after meltdown. When we got home, we put her in the high chair and she was fine (I'm so glad we have that figured out now).

Anyways, Payton's teachers said they added a picture schedule for her routine at school. I felt sorry for her when she went back the first day. She acted like she'd never been there before. She recognized the people, just didn't know what in the world to do (where to put her backpack, etc).

I also received reports on her goals. Most of them just stated she was still working towards her goal and making headway on them. The ones that got me were learning to meaningful count to five (right now she will meaningful count to two) and they would like for her to play on the playground equipment without fear before she heads to kindergarten. And I won't even get started on the writing. She will put pen to paper, but it's basically scribble from there. And-I know that's a step in the right direction, but it's hard seeing the others starting to write their names and she's older than them (some by two years). Neat thing is, though, she loves every kiddo there and gets excited seeing each one of them.

Our niece, Faith, came and spent a couple of days with us (and Grandma Wanda!) and the kids had a great time. I was so proud of Faith. I think it was the longest she'd been away from her parents, and she did really well. Faith and Payton are the same age (she'll turn six in April) and she is such a beautiful little girl. I cannot tell you how much fun Koen had with her. Payton had fun, but she's just not really much of a player. Koen on the other hand followed her every where she went and wanted to do the same thing she was. Part of me wishes to give him another sibling - because it really was neat seeing that interaction between Faith and Koen - but I know my family is complete. I do wish Payton interacted with Koen more, but she does as much as she can/wants, and I should just be happy with that.

Here's some pics from Faith's visit:

Whew!

2008-12-29T14:23:00.004-06:00

Christmas was wonderful this year. I cannot even begin to compare how much easier it was for Payton this year. The nice thing is, if she's having trouble coping she'll either go in a room by herself or she'll cry for 10-15 minutes, get it out of her system, and be okay. Christmas day was probably the longest for her and I got so tickled at her. By the end of the day she was completely zoned out in space and just sat there. The next day, she continued to zone out (while Koen played with every new toy he and his sister got) and she finally snapped out of it by mid-afternoon. It's nice to finally see that it just takes her body longer to process all the happenings that go on around her. Bob, Koen, and I can process it as it happens....but Payton, she still can be processing it for quite some time. I guess her mind can't just take it all in at once.

We made it through three Christmas parties, one birthday party, and even a suprise announcement that there will be another new little baby on the Littlejohn side of the family. Koen really got into unwrapping the presents this year, and unlike Payton, really paid attention to what was inside the package. All Payton cares about is ripping open the paper :) We got tickled at her because my grandparents put their packages in boxes that were already decorated, so they didn't need any wrapping paper. Payton separated the packages out and moved those boxes in the other room because they did not have any paper on them......and anytime someone told her one of them was her presents, she refused to open it and said "No, it's not mine!" and would give it to her cousin. For her, it's not what's on the inside that counts....it's definitely the wrapping paper!

Tonight, Bob's mom and niece are coming to visit. Payton doesn't have a clue yet because I knew if I told her she would get way too anxious about it. She is going to be ecstatic when she sees them tonight (and ofcourse so will Koen)! But, the neighbors will likely hear Payton's scream of joy as soon as she sees them.

Here's some pics:

Dev Pediatrician

2008-12-23T14:15:00.003-06:00

Friday we went back to KC to see the developmental pediatrician. I really do like the doctor and he was thrilled to hear how well Payton is doing with her medicine. He offered to put her on something for her impulsiveness (like Ritalin) but I said "No thanks". I told him if he could see where we were before and where we are now, he would be in shock. I definitely do not take for granted a day that goes by and Payton is sooooo happy. We have her set up to get her kidneys checked in February and Noel was gracious enough to give me the name of Abi's doctor, so I already feel more than comfortable with that doctor. Any time I know a doctor has seen another child with ws it makes me feel more at ease.

Here's a couple of pictures of Payton at preschool. Do you see how much her hair has grown? I'm really am so thankful Payton is able to relax now.

The above picture is when the kids all got to guess how many candies were in a jar. There were about 50 or so and I just had to show you what Payton guessed. Yep - EIGHT! And then after she proudly announces eight, she yells "That's My FAAAAVorite Number!" For us, there is nothing better than seeing a number "8" on a billboard sign, on the tv, etc. It truly makes her day :)

Just some pics

2008-12-16T13:30:00.003-06:00

Payton has been obsessed with wrapping things lately. OK-a long time :) Usually we 'imaginary' wrap, but now that it's close to Christmas we decided it would be a good opportunity to practice with taping and cutting (scary thought, heh?). After much wrapping, she decided she wanted to be wrapped up - so we did it. She was in heaven - as you can kind of tell from that smile!

And here's my little man. He LOVES his hat. He's all the time, running around, tapping his head and saying "hat". Neat thing is, when I grab his hat, he says "coat". He knows the two go together, so if he has one on, he immediately looks for the other. He is the most loveable, squeezable little guy.

Disappointed

2008-12-16T08:55:00.004-06:00

Payton had her cardiology appointment yesterday. She's always had the cardiac muscle hypertrophy they've been keeping a close eye on, but unfortunately she's developed the narrowing as well. Noel referred me to this doctor - and after everything Abi went thru I know Payton's got a great doctor. I still feel sad, though. Obviously, for now, just keeping a close eye on it. She's really started growing lately, so we are guessing this is the reason for it.

We were actually able to get a blood pressure on her. It was 155/111, but she was upset. The doctor said the only way to get a blood pressure would be to sedate her, and that's too much of a risk just to get her blood pressure, so he said until she starts complaining of frequent headaches we will assume it's okay. I've been having a lot of blood pressure problems lately and I thought my head was going to explode, so I really think Payton would tell me if her head was hurting that bad. For now, I'm going to try to buy a child's blood pressure cuff and practice with her at home to see if I can get some readings.

The doctor asked if she had any narrowing in her kidneys. I told him she hasn't had her kidneys checked before, so I guess we need to get that done(Noel, if you have a good doc on this one, let me know!). I felt sorry for Payton because she hates having all of those tests run, but we made it thru just fine. Now that we've got this appointment behind us, maybe I'll be able to get in the Christmas spirit :)

Am I Dreaming?

2008-12-12T10:41:00.003-06:00

Last night, I laid there listening to Payton in her bedroom talking to Thomas the cat as she tried to go to sleep. It really is such a peaceful feeling. We've worked so hard to get her on a good sleep pattern. For so long I thought we were just doing something wrong, but after having Koen it all just made sense that it was the syndrome wrecking havoc on her sleep. Payton loves Thomas so much and we make sure he's inside the house ready to sleep with her by 8:30. We try our best to atleast get her in bed at 8:30 and generally by 10pm she is asleep. There are still some nights, like last night, that for some reason she just couldn't settle and didn't go to sleep til about 2am, but it's not the hours of crying, so I can handle it. When I was laying in bed listening to Payton talk to the cat, ("Oh, Thomas, I love you so much", "Oh, Thomas, it's OK", "Thomas is fiesty"), I just couldn't help but lay there and smile. I honestly never believed her sleep would get better. She doesn't require much sleep, but I think she's getting to the point that as long as she has the cat with her, she's ok. It feels like a dream.

The other amazing thing: Payton's hair is growing. She already needs another haircut and it hasn't even been six weeks. My belief as to why......her medicine is helping her from being so darned stressed out, anxious and nervous. Before, her hair would fall out in clumps when I would comb it. Now, it doesn't and her hair is growing like crazy. For me, it's just another outward sign that she is doing better.

Koen's been fighting an ear infection for about a month now. For some reason we can't seem to get rid of it. He went back to the ENT yesterday and if he continues to have trouble, they'll just take his adenoids out. He goes to the same ENT as Payton and I just love that lady to death. She blamed it on allergies and said if we do take his adenoids out, they'll just do bloodwork at the same time so they can see what he's allergic too. Works for me! I don't know, they say there's that magic three that go together....allergies/asthma/eczema and he fits that pattern perfect. Funny, it's frustrating when they are sick like that and you just want to see them feel better, but I told Bob the tiredness I feel with Koen being sick and unable to sleep is different than the exhaustion I feel with Payton. I think it's because I know Koen will be just fine - his body is strong and can fight.....I'm just not nearly as confident in that with Payton.

Last month we took Koen to the cardiologist for a heart murmur and it was ofcourse an innocent heart murmur....he doesn't have to go back for three years (and that's only if he still has a murmur). Monday is Payton's turn. She's been such a different child lately that I'm even hoping we can get a blood pressure on her. Might as well shoot for the stars, right? :)

Tonight, Payton gets to go Christmas caroling. I can only imagine how much fun she's going to have (and how loud she's going to sing!!). Oh-and a big Happy Birthday! to Caleb and Abi. I wish Payton could be there to sing Happy Birthday to you both.

Things have changed....

2008-12-04T13:50:00.004-06:00

Last week my mom and I loaded up the kids and headed to my sister's new home. As we backed out of the driveway it just hit me all of a sudden that I no longer have to worry when I put my car in reverse. I know it was sensory, but any time we used to put our car in reverse Payton would scream at the top of her lungs and just cry and cry (and at that time, it took a long time to get her calmed down). Looking back it is amazing how different our family life feels.

Traveling used to be awful. I know a lot of it was anxiety and I firmly believe the medication Payton takes has made her life so much easier. Like I said, the the processing of going backwards in a car was awful for her, she has since outgrown that. You know what else she's outgrown? The fear of windshield wipers. I remember when it would rain and I would need to go somewhere, I would try to figure out what to do.....it was awful hearing her scream and literally shake from the wipers being used. Passing big semis isn't really an issue anymore, either. Sure, she may say "I don't like it" every now and then because of the noise when we pass them, but she doesn't scream and cry.

Sleep. This has changed as well. For the better! Before, Payton would wake up and just scream - LOUD. She may scream for just 20 minutes or so, or she could possibly scream for 3 hours. We just never knew. What we did know: Exhaustion. Now, if she wakes up, she crawls down from the top of the bunk bed and walks into my room and quietly says my name. Now, that is just peaceful. Sure, every now and then she will wake up screaming, but generally it's because her back or legs hurt. Atleast now she can tell us what's wrong and we can help her. I've found out how important sleep is-and how important it is to take care of yourself so you can take care of your child.

Saying goodbyes. Goodbyes were awful for Payton. Maybe it was transitioning from one thing to the next, I'm not really sure, but anytime we left someone's home or someone left our home she was just devastated. It nearly got to the point where it wasn't worth going to other people's homes, she just couldn't get over it. This has changed as well! Every now and then she may have a meltdown over it, but generally we can get in the car and leave......in peace! This also feels amazing. I would love to get in her mind and see what she thinks, but maybe in the past she didn't understand that just because we were leaving didn't mean she would 'never' see them again.

Our home feels different now. It doesn't feel like the stressful, cut the air with a knife type feeling. For so long it seemed like there was constant crying, emotions, raging fits, etc that we were just living, but barely breathing. Bob and I went thru something that we never dreamed we'd have to live thru and we know we are stronger because of it (even though I feel like my life span is probably cut short :) I know along the way there were family and friends who were hurt because they simply did not understand what we were going thru, but now I feel like we are starting a brand new life. I feel like we are entering a world we haven't even been living in for five years. We're not afraid to leave the house anymore - we're excited about doing it! We're excited to see how Payton reacts to people and things - because she can handle it now. This is seriously going to be the best Christmas yet for our family.

Beauty Shop

2008-12-02T14:06:00.002-06:00

Payton meets Santa

2008-11-23T14:17:00.003-06:00

Last night we went to a Christmas Parade so Payton could sit on Santa's lap and get a picture taken. She LOVES Santa.....and even on her birthday was a bit confused because she thought Santa brought her all of her birthday presents :) Before leaving, she gave him a big hug and then a few minutes later she said she'd forgotten to give him a kiss. Anything to get to go back to see the bearded man.

This weekend has kind of been a long week. I was under the impression when a child had tubes they would no longer get ear infections. Koen had been sleeping next to nil each night and he was such a fussy little man (so unusual for him), so I kept blaming it on teeth. Finally on Friday he kept grabbing his ear and just crying in pain. So, Bob and I took him to urgent care and sure enough it was an ear infection. Nice thing was, by the time we got to urgent care, tons of fluid was coming out of his ear, so I'm sure it felt good for Koen to have the pressure off. They went ahead and put him on an antibiotic to clear up his cough and congestion (and infection) but said the tubes were doing it's job, the fluid was draining. So, that was kind of good to know. And-it made me thankful that Payton hasn't had any ear infections since she's gotten her tubes.

Payton's been pretty emotional this week. Last night she was up about four hours screaming that her back hurt. I kind of struggle to understand why her body seems to ache so much. I suppose she could be using these aches to play us - just to be awake screaming. But, I'm guessing she'd rather be awake just hyper (which I can handle the hyperness much better than the screaming and crying). I don't know.....I've read that it's not unusual for individuals with ws to have joint pain and maybe that's what she is experiencing. I just had it in my head that it would come into play when she was much much older. I'm trying to remind myself daily (sometimes by the minute!) that generally the emotional episodes last about two weeks and then she'll get back to herself. Sometimes after these episodes I notice a huge developmental jump, which would be awesome!

This next week Payton and Koen are going to go to Bob's folks for an extra night/day of playing with grandparents, aunts, and cousins. Payton is ecstatic!!! I'm a little nervous. This is the first time Payton and Koen have stayed the night away from me out of town before. But, I know they will have a blast - and it's so good for them to be able to have the extra time with Bob's side of the family. We just don't get to see them very often-so the kids will eat this up. And, I'm proud of Payton because I really feel like she's able to handle it. She's really changing right before our eyes. Ofcourse Koen is too. He is talking, playing, and amazing me every day. For a while this week I wondered if he was just waking up because his brain was taking so much in during the day and he was waking up to practice all of his new words. He would sit there and just ramble thru words that he knew (most importantly choo-choo). It really is a neat thing to see.

If I don't post before Thanksgiving, I hope everyone has a wonderful time with family and friends. Happy Thanksgiving!

Pledge of Allegiance

2008-11-17T11:34:00.000-06:00

Check Out Nancy's Post

2008-11-15T12:45:00.006-06:00

Nancy always writes so beautifully. Thought you all may want to check out this post.
http://heartofafamily.blogspot.com/2008/11/lock-up-when-you-leave.html

Birthday Party Video

2008-11-13T01:36:00.004-06:00

Five years old!

2008-11-10T13:57:00.003-06:00

You had the best day on Saturday, Payton. Almost daily for a month you've been asking about Chuck E Cheese's, knowing you would get to go there on your birthday. Finally the day came! Unfortunately your excitement began around 2am and finally we got you back to sleep around 6am - you skipped from room to room, raising your arm straight up in the air and every now and then you would yell "we did it!!". When I would tell you to be quiet because Koen is sleeping you would look at me and say "I CAN'T!" Funny thing is, I really don't think you could calm down! You couldn't contain your excitement. Ask anyone in your family, Payton, and they would all tell you this is their favorite thing about you. Your happiness starts in your toes and just explodes through your body - the whole room can feel it! Your smile goes from ear to ear and as soon as it appears, everyone in the room lights up.

You are such a blessing, Payton. I am so thankful for everything you've added to our lives. You work hard to do the smallest of things and it's so inspiring. Do you know how far you've come? Your grandma and I couldn't believe how well you did blowing out your candles on your birthday cake this year! Last year it took a while for you to blow them all out - and the drool was flying :) This year, you blew them out in two big breaths - we were so proud of you!! And - the party.....a year ago you would have been unable to handle such a big group of people. Not this year! You got right in there and danced with Chuck E Cheese. Your daddy and I fought back tears watching you have such a great time. We've waited a long time to see you so happy, Payton and it's been worth every second. We're so thankful for you, Payton. You made it! You're five years old!!!

Click here for the pics: Payton's slide show

Celebrate!

2008-11-08T21:00:00.005-06:00

Happy 5TH Birthday, Payton! We love you! (I'll put together a slide show soon!)

Awe and improvement

2008-10-28T12:43:00.004-05:00

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 :)

Parent Teacher Conference

2008-10-23T10:12:00.003-05:00

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.

KC get together

2008-10-20T13:03:00.005-05:00

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.

Go To Sleep......

2008-10-18T20:58:00.001-05:00

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!!!

School Pic

2008-10-15T12:46:00.003-05:00

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 :)

Lumps, Bumps, and more

2008-10-13T16:37:00.003-05:00

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.

2008-10-06T09:22:00.003-05:00

Stuttering

2008-10-01T09:08:00.003-05:00

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).

Here's to another first!

2008-09-28T20:59:00.002-05:00

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

2008-09-24T09:21:00.003-05:00

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

2008-09-22T14:09:00.004-05:00

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!

2008-09-19T15:36:00.002-05:00

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

2008-09-17T15:52:00.002-05:00

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

2008-09-13T22:11:00.004-05:00

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

2008-09-11T14:13:00.002-05:00

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?

2008-09-09T13:47:00.003-05:00

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

2008-09-08T14:57:00.005-05:00

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

2008-09-05T10:57:00.004-05:00

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

2008-09-04T08:32:00.004-05:00

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.