Monday, November 28, 2016

Monkey bars


video

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

Adjustments

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.

Friday, October 28, 2016

Senior Day at Wheaton



Such a great time watcbing Noah play in person one last time. It was the only game I was able to attend in his two years at Wheaton. (So thankful for the live feed on computer). Loved getting to meet some of his friends and their parents. Loved hearing him talk the entire game long as he directed and encouraged his team. Was able to see his first goal of this season (and possibly only) So great having the entire family there to cheer him on even in the cold, misty Wheaton weather. Ayden Jane watched the game intently and asked questions and cheered for her brother. So cute. Noah summed it up well, "it was a great senior day. We won 4-0, I scored and my whole family was here." 

We have watched Noah play soccer since he was a little, 4 year old boy. He played with such joy and watching him last night, he was having fun! That's how it should be. He was enjoying the gift of athleticism God blessed him with. He was enjoying the comraderie that goes with a tight knit team. He was thoroughly enjoying the game he has played his entire life, but with a peace that the end is near. It's been a great run and he is ready to transition to life without soccer. Hard to believe.


We also spent some time just hanging out and enjoying fall. Something we don't really have here in Pawleys. There are times as a parent you wonder if you are doing anything right. Okay, there are a lot of times as a parent when you wonder if you are doing anything right. Then days come along when you get to just watch your kids relax together and enjoy each other. You put aside the worry and just enjoy the amazing people they are turning into before your eyes. Each has there own challenges to conqueor and missions to accomplish and I have no idea where life will take them. I can say for certain, however, they are good people who know how to laugh, love, serve and be kind to others. Love them all.

Saturday, October 22, 2016

gh woes

Hurricane Matthew interupted (thanks to knocking out power) our gh prescription. Basically, Ayden Jane needed an increase in dosage which required a new Prior Authorization. We couldn't start the process without power and we had never had issues before so I was not too concerned. With the late start we then found out that the insurance was deciding to make it a challenge for the first time ever!

They did not want to agree with Dr. Miller's dose increase because Ayden Jane has not had an office visit with her in over a year. You see, our wonderful Dr. Clark who used to prescribe her gh and saw her every 6 months moved out of state. So, we decided Dr. Miller would be her only endo. We saw Dr. Clark in January before she moved in June and it was over the summer that Ayden Jane had the strange spurt of growth in so many ways... including a dropping IGF-1 (finally)

We did see Dr. Miller last October, but it was at the 5k. Honestly, she spent more time with her that weekend than she would in her office so I think it should totally count! And we decided to cancel her actual appointment because of that very reason.

It's all pretty confusing to me though, because whether or not Dr. M sees Ayden Jane with her eyes, her blood work is clear that she needs the increase. So.... grrrrrrr.

For now, Dr. M had pfizer send an intermim supply while she works on it.

So, what were the results in Ayden Jane of the lack of gh? Not fun at all. After just a few days. Low energy. Panicky. Rigid. Poor sleep.... It was obvious to her teacher at school as well. For me, it's just a little scary to realize how dependent Ayden Jane is on things like gh. Truly makes the difference between being a typical kid or not.

Thursday, October 6, 2016

Prepping for Matthew

Yes, I have been extremely slack with the blog lately. I will try to improve that but for now, the topic is Hurricane Matthew.

We are not evacuating and are not is a zone that HAS to go. I'd say about half the people in our neighborhood are still here so we are in good company. For us, Matt prep has consisted of cleaning out the garage and gutters - yes, it's needed to have been done all summer and it took a hurricane to make it happen.

I also cut the grass. Not because I was afraid long grass and a hurricane somehow make for dangerous conditions, but because it was really long and with another dose of water and time to dry out it might actually be a jungle I would need serious equipment to get through. All the outdoor furniture is no longer out doors. Okay, for us that means the plastic adirondack chairs are put away. It wasn't too strenuous.

I did prep food for Ayden Jane. I know we may lose power for a while and I need to have options that do not need to be refrigerated or heated. I went with cashew bread, cottage cheese muffins, hard boiled eggs (okay, I will have a cooler) and coconut bars. I also bought some beef jerky, nuts and even Kind bars. She should be set.

Ayden Jane decided she needed to play outside ALL day long because, gasp, it's going to rain for 2 straight days!! She has no idea what she will do with herself. Crazy kid. It was great though. Her friend from the other side of the neighborhood came down and the bounced and rode bikes and gary took them to the playground. She was filthy by days end so I know she had a great day.

School work has been put up as we have had mini vaccation from school since it was cancelled Wednesday through Friday. (and I has a suspicion it will be out Monday as well).

We may never get back on the soccer field with all the water monsoon season turned hurricane has brought us, but she is happy when she gets to play. It has been a super sweet group of girls and she has really enjoyed it. I can't say her soccer is impressive, but the friendships and social skills are doing well.

She is still swimming on the swim team and I have to say I am pretty impressed. She is getting much better in the pool. Her arms are coming well out of the water when she swims and she is proud of herself for swimming 100's.

Hopefully we will still have power most of tomorrow and I can fill you in on Ayden Jane's 9th birthday!

Wednesday, September 28, 2016

Growing

 I was going through some things and I found the picture on the right from April. It struck me how different Ayden Jane looks now so made this. These pictures are only four months apart, but what a change in four months!!