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.