Monday, December 29, 2008


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'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:

Tuesday, December 23, 2008

Dev Pediatrician

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 :)

Tuesday, December 16, 2008

Just some pics

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.


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 :)

Friday, December 12, 2008

Am I Dreaming?

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.

Thursday, December 4, 2008

Things have changed....

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 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 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.

Tuesday, December 2, 2008