Why

Now that title may be a bit misleading. No, I am not talking about the why do bad things happen... discussion. Not that I don't still have that one constantly circling in my head as I am sure we all do. I am talking about the 3 year old question to every question, statement, comment.... It has been discovered by one very cute little 3 year old who happens to live here.

I had to laugh tonight as Gary was sharing a snack with Ayden Jane before bedtime. Ayden Jane asked him a simple question and he gave her an honest answer. Then it happened. "Why?" The blessed question of all inquisitive 3 year old's, or is it the cursed question which can never be answered to a 3 year old's satisfaction? I am not sure where Ayden Jane picked it up but I have to say that I am thrilled to be driven crazy in this wonderfully 'typical' way. Gary fell for it hook line and sinker and after several rounds of answers to the question, "why?" he knew he was in this for the long hall.

Here Goes

I guess I will go in reverse order in time. That means I start with today. Ayden Jane and I went to visit Dr. Clark. It is about a 2 hour drive so it shoots the day, but Dr. Clark is great. She looked over some labs that had been taken as part of an NIH study. We are a little concerned about Ayden Jane's cholesterol. It is not too high, but with the healthy diet she eats it is hard to understand how it could be elevated at all. I am going to drop one egg yolk from her morning eggs and see what that does. Her IGF 1 level has a bit of room so we are also going to go up to 0.6 gh. Ayden Jane grew like crazy over the past month. It was definitely not my imagination that all her clothes seem to have shrunk. She shot up from the 50th to the 70th percentile in height. That puts her at a bit over 37 5/8 inches and weighing 32 pounds. Those numbers keep her just slightly lean for her height. PERFECT.

We also had horseback riding today. Starting last week Ayden Jane got a new horse to ride. Her name is Zip (although AJ calls her rip). She is much bigger than Mindy was and Ayden Jane LOVES her. I made the mistake of telling her at our appointment this morning that it she would see Zip later... Over and over and over, that is all we talked about for 2 hours home! Anyway, here are some really poor quality pictures to show you how little AJ looks on Zip.

Before we left for endo (remember, reverse time order) we had speech. It was just the second time with her new speech therapist and Ayden Jane loves it. She worked hard and is starting to come up with some sounds I have not heard her make before. She asked for blueberries this evening with supper and instead of the usual 'bu bu bu's' we heard something resembling balooberries. I'd say that's a pretty big jump. Another one is that she is making a sound something like the sh. Up until last week we wore hoos and took hower's. (shoes and showers)

While I was putting in the horse pictures I remembered to check for random pictures taken by Mckenna on my phone. These were taken at Kayla's volleyball tournament.

Say cheese!

Silly face!

This one shows the lovely scar on her chin from the stitches. It doesn't look too great, but as long as she doesn't sit around like this no one ever sees it anyway!

So much more to say, but so many dishes, clothes... to take care of. I will get back on track soon.

Wow it has been busy lately. One of those weeks where I love having 4 kids, but am thoroughly exhausted from it! Not that next week looks any better! Lots has been happening so I apologize in advance for the scattered ramblings to come...

A couple of things with Ayden Jane. She is definitely wanting to eat more. It is a little scary, but may just be a normal growth spurt... It is just so frustrating that we have to worry about it. I would not really even notice with my other kids! I do know that last spring we wore 2T but bought 3T for summer. This worked great as the 3T's were roomy and easy for Ayden Jane to put on herself. Now? All the 3T shorts are too small for Ayden Jane to get on and off by herself. Last month we went shopping for some school clothes and bought 4Ts. So how do they fit? She can no longer get the 3's on and off herself and the 4's don't even look big! Okay, so that probably makes no sense to read... sorry.

At least I have lots of eyes on Ayden Jane this week which will help me determine if it is good growth and what adjustments to make. We go to endocrinology on Tue., have a well baby check on Thurs. and are fitted with our new orthotics on Thurs. as well. Sounds like 2 chances for height and weight checks to me! I know I am talking growth spurt for AJ, but I have also been thinking that she may need a bump in gh. It is hard to describe but I 'just knew' last time too. I have felt I have seen the signs for just a couple of weeks so I am waiting for our visit to Dr. Clark.

Language has been funny lately. Ayden Jane is so much more interested in talking to people but is continuing to use the "list of questions" approach. Thankfully, with the birthday behind us, "how old are you" has been knocked off the top of the list! Her skills are improving as she can converse a bit after her initial ice breaker. It has been interesting for me to see just how much (well, actually how little) other people can understand her. It has been exciting to see a few people be able to adapt to her speech fairly quickly and not need me to translate too much.

Well, 2 more soccer games to go tomorrow and I am tired! I have pictures to post from last weekends volleyball tournament that I still haven't gotten to, but I will try to get some soccer pictures tomorrow. (If I remember!)

Daddy Day

Gary has been busy lately. I mean the sort of busy where he is just not here. He is changing jobs so he is currently training at the new hospital during the week and working at the old hospital on the weekends. (he is an ICU nurse) Today he was just off. No work during the day at the new job and no work tonight at the old job. Ayden Jane attached herself to Gary for the day.

Gary picked her up from school, played with her, napped with her and she only allowed him to get her food, help with her shoes, put her in the car... We went to Kayla's volleyball game tonight and she sat next to him, leaned on him... So very cute. Finally, at bedtime Daddy had to do it all... So sweet. (And, I confess, a wonderful break for the Momma!)

Mckenna

Mckenna is 9. She is absolutely amazing with Ayden Jane. She is brilliant and funny and artistic and athletic. She is also, however, occasionally very fearful. It was not always this way. In fact, when Mckenna was a tiny thing she was head strong, afraid of nothing, full of confidence... We saw a dramatic change about a year after Ayden Jane was born, shortly after Ayden Jane was diagnosed. It was a rough year on Mckenna. AJ's first 8 months seemed like we were in a fight that we were going to 'win'. I think most of us saw AJ's troubles as somewhat short lived as she continued to slowly get stronger... Once diagnosed, it was a whole other ball game. I think, for all of us it was like a hard blow on already weakened hearts. We were sad and we felt like we had failed somehow to save Ayden Jane. We knew now it was life long... During those same months, we lost a family friend to cancer. It was simply too much for a 7 year old to realize that Mom and Dad cannot fix everything and that bad things happen to good people even when we pray. Deep stuff for anybody, let alone a second grader.

Mckenna worked through things slowly and we began to rebuild her confidence. The lights were on at night, she started karate... Ayden Jane continued to amaze us and Mckenna's broken heart over her little sister started to mend. I would say by age 8 (third grade) Mckenna was happy and confident most of the time, but every now and again you would see that grip of fear. It was just painful for us to watch.

So, last week, after a soccer practice we were riding in the car on the way home and we began to talk. I don't remember exactly how it started, but we talked about how she is still hesitant to tackle or go for the ball sometimes. I told her she wasn't always that way. She said she remembered, but she just didn't know why she now feels afraid. I told her the story. I told her how she was before Ayden Jane and the profound effect it had on her because she loved AJ so much. I told her I was sorry she felt scared sometimes, that is was hard for all of us to handle and that it was more than a 7 year old should have to handle. that I wished I could fix it for her. Her response, (with a tone of relief and excitement all rolled into one) "so that's why I feel so afraid sometimes! Well, I know now that is nothing to be afraid of so I can stop being afraid!"
The next night as I left her room she said, "Mom, you can leave the light on if you want but you don't have to anymore." Mckenna has been joyful (likely well rested) and positive and relaxed this past week. Oh, and on the soccer field at training last night? Let's just say, she rocked! She was ... free.

Birthday Festivities.

Bad news. We were so busy having fun I did not take any pictures during Ayden Jane's little party!! Terrible parenting. Jen told me she would bring her kids back and we can just take a few pictures as a redo. Sounds like a plan.

Really, Ayden Jane did not think of the day so much as a birthday party as just having her friends over to jump on the new trampoline. Ayden Jane really got into her birthday on Friday (her actual day) at school she took in 'cupcakes' and shared them with her class. The cupcakes were made basically from almond butter, bananas and eggs with some tiny semi sweet chocolate chips in them. I made them in the little mini muffin size. The teachers, much to my surprise, said all the kids absolutely loved them! I sent enough for the kids to each have 2 and was told most of them wanted the seconds and more. Ayden Jane was the first birthday at school and so was surprised and excited about everything they did. It was adorable. At her home party we just skipped desert and I don't think anyone really even noticed.

So, what have I learned for future birthday's dealing with PWS? First of all, I will have all the food prepared ahead of time. We grilled out and did cut up some pineapple and had salad... It was simple, but it caused Gary and I each to be busy and there was no clear distinction as to who was 'feeding' Ayden Jane... She definitely ate too much. I could tell by the size of her belly! There was not really anything she couldn't eat there other than a bag of chips. (which at this point she has no interest in anyway) And I think that Gary and I just sort of both fed her not realizing the other had... No harm done, but a good lesson.

Better yet, maybe even a party only requiring a small snack!

HAPPY BIRTHDAY!!!

Wow. I somehow feel like we have made it. We have arrived. I know that with each passing year the challenges don't go away, they just change, but I still have to say there is a tremendous feeling of accomplishment that comes with today. Early intervention is officially behind us. We are being very successful in a typical preschool. We have a good plan for the next year. We run and jump and play and are happy. We can communicate and Ayden Jane has an amazing little personality all her own.


I think the years in review should come in pictures:


A rough start








Growing. Soooo much behind those eyes.








Little did we know this was just the beginning of her comedy routine.

8 months. Diagnosed. (Wow. How did I not see it?)

Our new diet and supplements are bringing us to life.

The love of climbing and mischief begins.

Strawberry picking with friends.

Summer vacation 2009.

Soccer season begins. (and never ends) AJ is on a mission to swipe every water bottle.

Christmas 2009. Texas hat from Grandma and Grandpa G.

Summer 2010 Ready to take on the future!!

Birthday with family and friends on Sunday. I will be sure to get lots of trampoline pictures!