Saturday, January 14, 2017

Winter Challenges

Keeping Ayden Jane in the sweet spot so that she is can do well in school, keep her weight well managed and just be happy over all, (not to mention easy to live with) gets to be a real challenge in the winter months. We are nearing the end of January when she is typically the heaviest, most challenging, lowest tone....

The exercise piece seems to be so crazy important for Ayden Jane. I am not sure what the extended exercise does in some areas but I am sure that it positively effects blood sugar, ketone production and metabolism. It goes like this - when she gets the long walks, the good hard swim team practice, hours at the beach and pool, long sunny days on the trampoline with friends, regular running from training to run a race... you get the picture. When these happen, Ayden Jane is happy, not hungry, thinks quickly, sleeps soundly, learns fast and is just a joy to be around.

When this sort of exercise ceases to happen, her brain gets stuck. She gets a little more hungry. She argues more. She gets a bit anxious. She needs things repeated. It takes forever to do schoolwork. The pace of life slows even though the effort increases on her part. It is frustrating for ALL involved.

In some ways, I think it is good that during this time is when we are seeing Dr. Miller. It reminds me of all the concerns we still have for Ayden Jane. On AJ's part, she notices the difference in her brain running smoothly and not. She gets frustrated by it. She says things about how she does not like having to take her pills ect. EVERY DAY. I think she feels the very real and consistent, daily burden of dealing with a chronic medical issues.

I look forward to the day that she does not feel that burden so heavily.

Monday, January 2, 2017

2016 Recap / 2017 Preview

One thing I really enjoy about the blog is I can look back over the year we just completed as I look toward the year to come. 2016 had some fantastic accomplishes and some very hard times.

The hard times are marked by my Dad's passing, Gary having major wrist surgery and being out of work, Noah with a total of 3 surgeries before years end, Mckenna ending up in the hospital for a week and Kayla patiently/not so patiently trying to figure out the next phase in her life. We are thankful that most of these things have settled, and hearts and bodies are all the mend.

There have also been many good things. First plane rides, first trips to roller coasters, visiting Boston and Chicago and Indianapolis. Cheering for Noah in person, as a family, for his last home soccer game.

For Ayden Jane, the triumphs add up. Her first honor roll at the end of second grade. Reading taking off, Swim team going well, Traveling to Boston with Kayla, Trips to see PWS friends across the country. Climbing to the top of the rock wall. Standarized test percentile ranks climbing. Making good friendships. Hunger nearly disappearing. Learning to monitor and maintain her own weight. Eyes improving. Conquering the monkey bars.

Looking forward, I can barely see through to the end of January. Coming up this month we are remodeling our kitchen. Annual review time at work with 41 IEP's to write and meetings to hold. Gary going back to work (hopefully confirmed tomorrow). High School soccer back in action for Mckenna. Swim team and (hopefully) girls on the run for Ayden Jane by the end of the month. A trip to see Dr. Miller and to Shriners's for a scoliosis check. Such a busy month it will be!!

Hopefully the rest of the year won't be quite so incredibly busy. I am thankful to have jobs and active kids. I am so thankful to get a much needed kitchen update. I am thankful for caring doctors even if travel is required to get to them.

There is much to hope for on the PWS research/treatment front as well... Not going into that right now, but I am truly excited and believe that one day, the last pauses and challenges brought to AJ by PWS will be put behind her.

Wow, here is to the start of a new year and tackling it head on!!

Monday, December 26, 2016


The last couple of days of school and the first part of break I gave Ayden Jane NAC. Once upon a time I gave her pharmaNac which is a pill that fizzes in water like alkaselzer. It was a good thing for her and helped in a few areas including reducing the pws pause and a sort of studder she had when younger. The formula of the Nac was changed by the company and it upset AJ's tummy so we stopped. That was last spring...

After chatting with Dr. Miller we decided to give a capsule form of Nac a try. Others have used it with success - although most use it to help with skin picking. It sort of fell in the category of safe and maybe it would help her get over the afternoon lull a bit more smoothly.

What did we notice? I think there was a slight improvement in the fluidity of her words and the quickness of her verbal interactions. You know, a reduction in th pws pause in processing speed. That was the positive side. On the negative side Ayden Jane STUNK. I mean, shower in the morning stinky by lunchtime. I'm not talking a mild odor, I mean no one would want to sit near her sort of smelly. 

Additionally, she was hungry. By 10 in the morning she was already asking if it was lunchtime. In fact, every hour or so she was wanting to eat something. That can be typical with PWS but it is not typical for Ayden Jane. She gained a couple pounds during the week she was on it.

I stopped and within 48 the horrid smell and the hunger were both gone. It is so strange. I asked Dr. Miller if that was a side effect of the NAC and she had never heard of it happening. Well, I guess that's just my AJ. At least she never leaves us guessing as to whether something is effecting her in a positive or negative way.

Saturday, December 17, 2016

Third Grade

I know, I have been terrible about keeping things going on the blog... Going back to work full time has definitely taken a toll on my time for things like this that I enjoy.

Ayden Jane is still doing well in third grade. She does struggle some days in the afternoon with maintaining the energy demands of a full school day. Her teacher is awesome, however, and finds ways around it. If there are things Ayden Jane just cannot get done while she is at school, she sends them home on the weekend. There is no time during the week to add on to her current homework and extracurricular activities.

The plan was for soccer 2 nights a week and swim team 2 nights a week. The timing did not always work out so most of the time she made it to soccer just once. She also attends and after school club one day a week.

This coming spring we are looking to trade in the soccer for girls on the run. Ayden Jane is not entirely sold on the concept yet but I am hopeful. Basically, girls on the run is close to home and I think she would be very successful in it. Soccer is a bit of a drive and, I hate to tell her, not her forte.

Point of concern is that as we were walking on the beach with the dogs today, I noticed her crazy leg again. She ran with Tucker and that darn right foot was not aligned like we worked SO HARD on. Of course, the PWS momma in me wants to panic that her foot is a sign that her hips are internally rotating which is a sign that her back is crooked! We have a scoliosis check with Shriner's in February and hopefully we can get a quick check in with the amazing Mrs. Jen over Christmas break.

On the positive side, Ayden Jane is finally a totally independent reader! She sat and read 175 pages of a book in one sitting last night. Until then we would read chapter books, but she always wanted to read them together. More intersted in the time with one of us than in the actual reading.

Big things coming up for Ayden Jane over the next couple of months. Trip to FL to see Dr. Miller, labs and a trip to Shriner's. 

Monday, November 28, 2016

Monkey bars


Years of hard work paying off. Ayden Jane has been working on being able to do the monkey bars for years. Seriously. She would have occasional success and get 4 or 5 bars... This is a long set of bars, 13 all the way across.  She has been working on them each day at school and apparently mastered them! She was so proud to show me.

Monday, November 14, 2016

PWS Pause

Ayden Jane is doing so amazingly well .... most of the time.

It goes like this. When she has had enough sleep, enough exercise, the right food, proper supplements, the right dose of meds, completely healthy, not too much to process ... she is quick witted, kind hearted, funny, deep thinking and an overall ray of sunshine.

An example of her wit would be last night. I told her I was going running but I stopped by the computer to shoot off a quick email. She called, "mom, I thought you were going running." I said, "I am." She giggled and said, "that doesn't look like running to me!" Then Kayla came in the door and I invited her to go run with me. AJ didn't even look up from the page she was coloring and said, "Well we all know that's not happening."

I suppose I should not encourage the sass and it may come back to bite me one day.

Most of the time, Ayden Jane operates in near top form and although it is a lot to balance, we have become quite good at maintaining the balance needed. At times, though, she just can't follow what you are saying or there are just too many things going on for her to process quickly enough. She has begun to recognize this for what it is. In the past, she would just argue with you and claim that her lack of understanding was your fault. Or just stop and stare, as if she is waiting for her brain to catch up to real time but it can't.

A few days ago I was trying to explain something to her when she was a bit tired. After I repeated the same thing for a third time and was getting impatient with her she tells me, "I hear the words coming out of your mouth but my brain isn't processing them." Wow. What a great description. I have also heard, "Can I say it one more time, please? I just can't get it off my brain."

These PWS pauses/glitches in her neurology are annoying. They make some days a challenge. If I put a positive spin on them, they also show how amazing Ayden Jane is thinking most of the time. They keep me from taking the other 90 percent of her day for granted.

Monday, November 7, 2016


I have gone back to work full time which has been a big adjustment around here. Well, a big adjustment for most of us. I have been leaving for work before Ayden Jane is even up in the mornings often times. I don't get to pick her up from school. It's strange.

In all honestly, Ayden Jane gives Gary a really hard time. It's funny, in a way. Probably not to Gary, but still. Bascially, I have been primary care giver for as long as Ayden Jane can remember. Gary has worked a ton of hours and mostly has played with Ayden Jane and spent great time with her in a sort of... give me a break role. Ayden Jane simply just does not yet trust that he has any idea what he is doing. I mean, want to play a board game? Dad's the go to. Want to swim out in the ocean to the deep, deep? Dad is happy to take charge of that. Need someone to be spoiled rotton? AJ knows Dad is always there.

It has been a few weeks and it seems they are begining to find their own rhythm. Hopefully he is no longer hearing, "that's not how mom does is" too many times each morning getting ready for school.

Aside from the adjustment, Ayden Jane has had a few pretty hysterical comments lately. I figure I really need to start writing them down so here are two Ayden Jane 'quotes'.

Ayden Jane took the CogAT testing. It is a test to determine eligiblity for the gifted and talented program. Honestly, it makes no difference to me if she even takes the test, but I just let her roll with it and give it a go. You know, sort of like practice. After it was done she was talking about it one evening.

"I finished one section and the directions said to go back and check your answers so I erased them all but then ran out of time to do them again." True PWS brain moment. So very literal.

Saturday we were riding over to grandma's house to help with a few things. Ayden Jane started talking about Grandpa (who died last summer) She asked, "How did they know Grandpa was dead?" I answered, "well, he wasn't breathing so they had to go to the hospital." Then Ayden Jane asked me again, but answered her own question with, "Did they know he was dead because all the light went out of him and only darkness was left in his body?" She just gets things on a different level than the rest of us.