Jump Highers (continued)

Yesterday, (yes, I always seem to operate a day behind) Jen came and worked out AJ in her new jump highers. It was FASCINATING.

First up we took AJ outside so Jen could watch her run. Not sure exactly what Jen was thinking, but she saw something she wasn't so sure about. For my part, I saw a kid who was doing her best, but was obviously still not used to those things on her feet! AJ said they felt good though.

In we came and AJ wanted to show Jen how good she can jump so we had to oblige. She jumped as usual and hopped very well. In some ways she seems very stable in the JHs and in other ways... very different.

Time to check the posture. Standing in her big girls her legs looked AMAZING. I just kept staring at them. (I was behind her) The best I can describe is that is was a very athletic stance. Significantly different. Jen used her big PT words that I don't even remember now, but when she uses the big words she is definitely impressed (or concerned).

It was funny to watch AJ as Jen had her do some activities because she would start to posture how she 'cheats' but the JHs wouldn't let her. Then she would over react to that so there was a bit of swaying going on. It looked a bit like she was on a boat!

Now here's where the trouble comes in. Ayden Jane still shows a definite left side weakness in her left arm. She was still dropping back the left shoulder and avoiding the left hand. Jen worked for a good while getting the left engaged and AJ looked much better.

What really showed up was when Jen put the 'clomper stompers' on her. We used to make them with coffee cans and string. Flip the can upside down and run string through holes and up to your hands as handles. Jen's were pretty, plastic and green, but the same thing. Ayden Jane can work the right foot perfectly. The trick is to be able to pull up with the hand and bend the knee, taking a step, at the same time. Ayden Jane simply can NOT use the left hand and left foot together! It was really amazing to watch. Such a hidden little piece of evidence of a still out of kilter neurological system.

Since the beginning of PT at 5 months we have seen evidence of the left side weakness, particularly above the waist, sort of come and go. For a good while, the left side was just about 2 weeks behind the right. It was very apparent when learning to crawl... It was just amazing to see it 3 1/2 years later, just in a different form.

So, we are excited to see how Ayden Jane does after she has some time to get used to the JHs. I think it was really surprising for me to see what a change in her stance they made.

Jump Highers

Yesterday I took Ayden Jane to see Mr. Alan. He is the orthotist who made her AFO's. Besides being a really nice guy, he works really closely with Mrs. Jen (PT) and so between the two of them Ayden Jane gets the best help in the business.

Ayden Jane's right AFO is made to keep her from supinating. She likes to curl her little toes and roll onto the outside of that foot. The left one is made to keep her from pronating. Yep, one uneven little kid. Apparently Ayden Jane is a master of finding 'compensatory patterns' which basically means she can find a way to avoid any muscle she desires. We just call it cheating.

Okay, so none of that is too exciting. Today she wore them to school and she did not stop jumping by the time I left! When I picked her up she had noodles for legs. She even had trouble climbing into the car. It was as if she worked muscles that she had not used in a loooooong time. Can't wait until tomorrow to see if it was just the workout she gave herself because she was so excited about them or if we have just caught up with her cheating and are forcing her to play fair.

One Small Step

I have come to terms with the fact that I can't do it all. Okay, I still think I can in some areas but in this one, I give. I was so excited to attend the One Small Step walk in Williamsburg this year. It seemed the perfect answer to just not being able to head to LA for the FPWR conference. Alas, finances have made us choose between PWS family/Ayden Jane funds and our own little family needs. We put a lot of our families needs on hold to get through the first years, the crisis years, for Ayden Jane. I don't mean that to sound neither noble nor whiny. It was the right choice and we have all come through well.

When AJ was diangosed at 8 months, I dove into the internet. I had no choice. There were no living breathing people that I could connect with that could offer me the hope I needed to hear. Thankfully, my parents understood the need for us to make contact with others, with real information, real faces, real hope... and offered the necessary cash to get us there. The numbers were few but the hope offered was astounding. Watching people way further down the road be, well, normal people. I met kids with PWS and they were admittedly a bit quirky, but great kids. The research was like listening to science fiction but it was real. We left finally feeling for the first time since diagnosis like maybe we could survive this thing call Prader Willi Syndrome. Maybe our new normal could be a good normal.

In some ways I feel like I missed out on the lives of the 3 older kids for a period of time. That is my only regret in the first few years. The marathon was something I needed to do. It was both time for me to process all that I was reading and something I could DO to help Ayden Jane.

So, as much as I have loved following all the incredible excitement going on in the PWS community, I am putting our resources to use here at home. I will very much miss seeing some of the friends we made during the 2 years we managed to get to the conference. There is something amazing about meeting up with others who walk a similar path. In fact, nothing like it. For this season, though, I think it is right to put our little family first. They are pretty awesome.

Catch the excitement of the One Small Step walks at the link below. We will not be able to walk with our friends in Williamsburg, but we will walk with them in spirit. (And miss them desperately)

http://onesmallstep.fpwr.org/dw/users/aydenjane/williamsburg

Growing So Much

Lately Ayden Jane is always talking about how big she is. It is exciting that she can do so many big kid things and is doing so great, but there are times when I am reminded that it is passing too quickly. The pictures below show Ayden Jane about a year ago and yesterday. What a change!

Clemson

Kayla has been at Clemson now for a few weeks. All the kids really miss her. Kayla and Noah surfed together, went out to eat together, went to church together, stayed up late and did homework together. They have such a great friendship beyond the sibling relationship. It has been so much fun to watch them grow up together and it is a little strange without her. Noah looked a bit lost at Grandma and Grandpa's for a Labor Day picnic. There was no partner in crime.

Mckenna is 8 years younger than Kayla but despite the years, Mckenna feels quite close to Kayla. They double team Noah together and when Noah is not around Mckenna messes with Kayla. Mckenna gets so excited when she sees Kayla is on facebook and she can chat with her for a few minutes. (yes, my 10 yr. old has a facebook and yes, I would have never let the older 2 at her age...) I know Mckenna is very excited to show Kayla their new room now that they are room mates.

Ayden Jane soooo misses Kayla. She has the added trouble of not really understanding this whole college thing so she keeps asking if she is 'done yet'. Ummm. No AJ, Kayla will be at college longer than few weeks. Kayla called today with a random question for me, but Ayden Jane wanted to talk to her. It was so cute I almost cried. She told Kayla, "I love you this much!" with her arms spread wide. Then AJ told her, "I miss you. I wake up every morning and give you kisses." Wow. Good luck Kayla getting Ayden Jane to let you out of her sight when you come visit:)

It has been so much fun as a parent to see the differences, similarities and relationships between all the kids. We are blessed with great kids who have enough in common to be able to relate to one another and yet are different enough in personality that they get along really well.

The dynamic left at home is a bit different. It is much quieter which is funny because Kayla is not the noisy one! I think the others just have so much fun messing with her it winds everything up. Noah is now driving and it is strange to see him go by himself. It was always the 2 of them. He is really stepping up as the lone big sibling and Ayden Jane has attached herself to him quite a bit these days. I guess it can be tough to be a boy with 2 little sisters! He even took Mckenna out for a treat tonight. Used to be Mckenna got left home and the 2 big kids went. In some ways the changes are good, but we will all be glad when things get back to normal around here! You know, at Christmas.

Into EVERYTHING

Okay, so I am not sure if this is PWS or just Ayden Jane, but this kid is driving me crazy with getting into things. Sure, food is scary from a PWS stand point of not having an off switch, but I don't think the times she has gotten into the pantry really have anything to do with 'food seeking'. I know, how can that be? She is getting into a pantry and 'foraging' for food! Well, the couple of times she has done so have been days where I lost track of time and the kid was WAY past meal time. Also she has gotten into foods that she is allowed to eat. An example is yesterday when she nearly emptied a container of almonds. There are gold fish, crackers, cereal, cereal bars.... all in the pantry that the other kids eat. She didn't touch any of them. The trouble is just amount and needing to reinforce that she has to ask...

So what is she getting into that has me crazy? Lotion. Any bottle of it, anywhere, anytime; sunscreen; shaving cream; soap; shampoo... Turn your head and she is covered.

Cars. She wants to play in any of them and will find lotion... (see above) or anything. Yes, we are now locking them in the driveway. She has slipped out on these hot days and closed herself in one before I managed to get a load of laundry in the washer.

Climbing. Top of the closet, all over any one of us, on the back of the sofa, up the bookshelf (yes it fell on her), up the bunk bed ladder (then jumped off because she was playing 'ribbit', and landed on said bookshelf), the outside of the trampoline, up her dresser by pulling out drawers, uses stools to get to counters or in high cabinets...

I think you are getting the picture. AJ is the youngest of 4 and I KNOW my other 3 did not get into things like she does. I have no solutions, but thanks for letting me whine. I get that I should be thrilled that she is not yet 4 and so capable.... and I will be in the morning after a good nights sleep!

Super Hero AJ

This picture is from sometime last summer, but after her first full week of school it just seems appropriate. Ayden Jane is off to preschool 9-12 mon.-Fri. She adds horseback riding on Tue., PT on Wed. and ST on Fridays. That's just her schedule. Not to mention she spends Mon. and Thurs. night at the soccer fields (on the playground). And from here on out I don't think there is a free weekend until Oct. has come and gone. Whew! It makes me tired.

So how is it all going? Well, remember the super hero picture? Her teacher says she is doing great and is already speaking up and participating... She is doing great with the counting activity. Pretty cool activity from a therapy stand point. They are given a number up to 4. Then they have to place clothes pins on enough dots to show the number. Ayden Jane is now counting everything!

She is doing fabulous in PT. We have been working really hard on gripping a marker properly and drawing lines. This week she traced simple letters pretty well! HUGE improvement. She is also hopping! I was amazed when I saw her in her room working on it. We have never done it in PT, but she was just determined and taught herself. ST went well except that she was tired since it was Friday afternoon! Heck, I was tired too.

And for the big news of the week. It looks like I will be returning to the work force. We have been watching and waiting and counting pennies for quite some time now. It seems the choices were always full time or nothing. We just didn't think full time was an option with Gary's crazy schedule and the distance he is from home. So, I applied to something I came across not really knowing the hours... It turns out they are looking for someone 2 1/2 days a week and are pretty flexible as to the days! I can seriously work with that.

Ayden Jane will need to stay for after care on Tue. until 2 so Gary can sleep off his Mon. night shift. She will officially begin to have lunch at school. I am not worried as the school has been so awesome with all the things AJ needs. Hopefully she will take her Super Hero powers to the next level and handle the transition to mom working and being gone a bit.