Saturday, October 14, 2017

Small Bump, Big Jump

After talking with Dr. Miller, we decided to increase Ayden Jane's dose of Pitolisant by another 4.5 mg. This takes her from the dose of 18 she was on to 22.5. 

Why? you ask? Some of the sleepiness creeping in after school. A bit of over emotional, overtired stuff. Notes from her teacher that her processing speed is noticably slower later in the day. And Ayden Jane asking for it. She gave a fair account. She just told me that she can do all she wants but doesn't want to feel tired and have to work so hard. She was really sweet honestly, telling me to check with Dr. Miller and if she couldn't it was okay. She would manage.

Dosing is a bit of a challege because Pitolisant is new. She is young. We want to ere on the side of caution if there is any chance of error. It is EXPENSIVE. Dr Miller decided with us there was no issue going up another bump and that we will hold there for a while - like until we see her in January.

I'm not sure what I expected. I do know I did not expect the bump to make a huge difference, sort of just give her a boost to get through the day with more even energy. What it did do for her was so much fun! She is loud and silly and happy after school. She NEVER stops talking. There is little aruing and much laugther. 

She PLAYED soccer in her game today. I mean, she kicked the ball. Got in the mix. Ran up and down the field. No stand and stare. No getting tired. 

Needless to say I love it.

Sunday, October 8, 2017

First of Many to Catch Up

I am so behind, which is a result of an out of control schedule! For my part, I am not keeping up with life well. My last post was a couple of weeks ago and the days have marched on by.

A couple weeks ago we had soccer in Columbia Sunday, then went to Greenville Thursday and Friday to see Shriner's for a scoliosis check and, of course, to visit Ellie. First up, the scoliosis check went well. I hoped for a reduction in the curve, but no such luck. They said that the curve has remained stable and seemed very pleased with that. I'm not super thrilled that she has even the 13 degree curve but if they docs are not worried I guess I shouldn't be concerned about it. For now we just continue to watch it. Back for another check in 6 months.

Hanging with Ellie was great. Her school was so kind to put on a carnival for us to enjoy together. Honestly, Ayden Jane really enjoyed seeing Ellie's school and doing all the rides and games with her. So fun to watch their friendship

We more or less recovered from all that fun and we were back on the road to Columbia for a soccer tournament for Mckenna. Mckenna played 4 games in under 30 hours... she was exhausted. Ayden Jane ran with the pack of younger siblings, enjoyed time at the hotel pool with a friend and just generally kept occupied and happy. We were all EXHAUSTED after the weekend but, of course, had to jump right back into the swing Monday morning.

It all caught up on AJ during the week and she had a rough one. I think the travel and eating out caused her gut to mess up which always seems to cause her behavior to mess up. Anyway, by the end of the week she seemed pretty good.

So that catches everything up until yesterday. We had Ayden Jane's game at 9 (which was less than her best performance) and then just stayed HOME for the rest of the day. It was wonderful. Then today it was back on the soccer road for the day. The games are fun and AJ does great but this momma is tired.

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.

Monday, August 28, 2017

4th Grade

So far so wonderful. I have also started a new school year and I am in a new school a ways up the road from Ayden Jane. I leave early and feel a bit disconnected from what she is doing at school, however her teacher has been awesome about filling me in on any details I need to know.

Ayden Jane is happy as can be and I am hearing lots of new names of friends. So far there has been no homework, which has been very enjoyable for all of us! I do need to get some structure in our lives with at least a bit of reading ect. I am sure it will come.

It is so strange to be so relaxed about the school year. Most years, the first few weeks I am pretty much holding my breath. Just hoping she gets the hang of procedures and schedules and expectations. It just all seems easy this year. I am sure some of that is the amazing teacher she had last year who prepared her so very well.

Getting off to school in the morning is interesting at least 1 morning a week. With Gary working nights and me having to leave by about 6:20 to get to work on time, there are mornings where Mckenna is now taking over as taxi driver. So, yes, I pack Ayden Jane's lunch and snack, and I put out her morning meds/supplements. Then I wake up Mckenna as I leave. Since pitolisant, Ayden Jane needs to be woken in the morning but she is getting the rest of it done herself. This morning was the first "on their own" morning and I got the text of relief from Mckenna. I made it and even on time. They were ready and out the door in time for Mckenna to get Ayden Jane dropped off and herself over to the high school without being tardy. Woohoo. That is not small feet.

The evenings this year are proving much different from last year as well. Last fall we were struggling to find enough hours in the day for exercise and being a kid. She was just so tired. Tonight, I got the text from Gary to hurry home with supper because Ayden Jane was nutty. After we ate he took her out to the beach on the creek side and they swam a long time. He had her swimming against the current and giggling away. She went to bed around 8:30.

So, Ayden Jane's life is pretty good about now. Hoping to build more solid friendships. Get back into some good books and enjoy being in the 4th grade.

Friday, August 11, 2017



Just more evidence of an epic summer. The kid is a beach kid through and through. She has so much fun in the ocean. Getting up to standing and riding waves was the goal of the summer and she has loved every minute of it.