Wednesday, September 20, 2017

Our New Life

Ayden Jane continues to do well and love grade 4. I am missing her. Missing getting in her classroom or visiting her at lunch and putting faces to the names I hear. I feel sort of disconnected. I remind myself how amazing it is I can be disconnected and Ayden Jane still doing fantastic.

I mean, we still have no working kitchen so I have not been able to provide meals ect that would be best. I have no part in picking her up or after school snacks. I don't even see her in the morning. It's all sort of strange. For the past 10 years she has been so dependent on me. It is good, but strange. She is functioning without me and, although there will be some improvements coming in the food category, she is doing fine.

Additionally, I had a WOW moment last weekend. We went to Mckenna's soccer game in Columbia. It was HOT. I was hot, and I am always the last one to be hot. In years past, I would likely not have even attempted to attend the game because I would have known Ayden Jane could not handle the heat. This summer, I just didn't notice heat being a problem for AJ. I didn't think that much of it and I had taken for granted how much better she handles the heat. Sunday really confirmed it for me though, we were out there for nearly 2.5 hours with zero shade and she was totally fine. Thanks Pitolisant.

Tomorrow, off to Shriner's! Yikes!

Wednesday, September 13, 2017

School Adjustments and Scoliosis

Ayden Jane is still loving school, which is wonderful. We have put hurricane Irma behind us. It was a little stressful, but more in a, will it come here and we go on a trip? Or will it go elsewhere and leave us to go to school sort of way. In the end, we didn't get to go away and we did miss a bit of school...

The return to school has added a bit of weight to Ayden Jane which honestly makes me more crazy than it should. It happens most every year and on top of that, we are remodeling our kitchen and eating out entirely too much. I guess it's all to be expected. 

This week she has started back to swimming and she is very excited to play soccer again this fall. She took a year off since she just could not stay awake long enough in the day to even go to practice last fall. Hopefully, once we are all back in the groove she will lean back out. Then again, it is entirely possible she is just adding a bit around the middle before she shoots up. These are the things that cause sleepless nights for PWS parents/ I'm worried and I should _____. No, she's fine and I need to not stress us all out. But I need to catch it before it gets out of hand. But maybe she is being a typical kid trying to store up and grow. ugh.

Next week we head to Shriner's Greenville to check on the scoliosis. Last January Ayden Jane's curve was measured at 12 degrees. That does not sound like a lot, but it was a significant increase and she is at the age where the spine grows quickly so the docs were not happy. 12 degrees was still in the "monitor" range. As we were leading up to our appointment in January, I was noticing her using poor posture when sitting on the floor. It was winter and we had not had a lot of activity and it was just prior to beginning Pitolisant. We/she corrected the poor habits of sitting posture. Summer and lots of activity came along. Pitolisant has seemed to improve tone. Here's to hoping for good news next week!!  If the curve increases to 16 degrees she will have to begin night bracing. Please no!

Sunday, September 3, 2017

Our Lives

Gary and I were chatting about how very different Ayden Jane is this fall. He was noting how totally different she is. I have mentioned lots of ways that is true as we have gone through this pitolisant journey. Ayden Jane feels the difference and mentions it often.

As we talked though, what struck me is how different OUR lives are. I mean our - as in the rest of the family. We went out to dinner tonight, since our kitchen is torn apart with a remodel. As we chat at dinner, Ayden Jane keeps up. She joins into conversation and keeps us all laughing. I know it sounds like a little thing, but it used to be challenging to just have fun family conversations. Either she couldn't keep up and got frustrated or she would constantly stop us and ask us to explain things. She'd ask us to explain words or expressions or word choices or if something was funny or why .... It was exhausting and made it hard for our family to really just relax and enjoy time together.

Our evenings are normal. I get to go to games and events and fun stuff. Last fall, I pretty much just had to stay home with Ayden Jane if anything was going to go past 6. Any moment after six, we knew she could completely melt down from exhaustion or just fall asleep on the spot. We typically chose not to risk the arguments and disruptions that evening often brought if we took her places.

It's like we breathe a daily sigh of relief. We go on about our days without the feeling of 'walking on egg shells'. The general stress level in the house is reduced tremendously. I mean, just the fact that I have been able to go back to work full time, our kitchen be completely torn apart which means the entire house disorganized as there is "stuff" everywhere, workers coming and going (or not coming when they were supposed to be) and Ayden Jane able to carry on. If you have never lived with someone with PWS than you probably can't grasp how incredible that is. Any one of those things in the past would have made for a very challenging balance to life.

Pitolisant has freed Ayden Jane from much of  PWS, and has in turned freed our entire family.