Getting Better

The new food routine is definitely helping. Ayden Jane says she is powered through and doesn't feel bad at all during school now. Yeah... That's how it's supposed to be kiddo. Sorry. Still amazes me how she just accepts things sometimes. I mean, who accepts that at this school I feel bad everyday around 11:30 or so....

She is much better after school too. I think the constant stress on her system each day was making her more worn out in general. She finally got back to running and did a great 1/2 mile. I'd say it's the first successful running since before she got sick prior to Christmas.

She is doing some crazy "throwing up" thing at school. It's bizarre. I don't think it is real throwing up, as the photo evidence I have requested looks mostly like chewed up food that was spit out. I was thinking maybe she was trying to get out of something at school. You know, trying to get me to come pick her up. When I asked her, she looked at me like I was crazy and said, "Why would I want you to come pick me up? I love school."

So, what is the motive? I still have absolutely no idea. I just told her that if she can successfully eat at home and everywhere else on the planet I expect her to chew her food and swallow at school. No more wasting everyone's time with this nonsense.

We will see if that works. It's crazy. I mean, what kid with PWS chooses to spit out food?

High Maintenance Kid Sometimes Equals Parenting Fail

So this school year we have transitioned into a new school. Her old school went from Kindergarten through grade 3. It was an absolutely wonderful experience. She had great regular ed teachers, the most wonderful school nurse, awesome resource teacher who kept and eye on everything. She had the same special area teachers - music, PE, art, library and they all knew her well. All of these teachers sort of watched her change and grow through the years and it was the safest, sweetest place anyone could possibly go to school.

This year she moved on up to Intermediate School - grades 4-6. It is also a great school and I am sure I will feel the same about it soon enough. I have, however, underestimated the the effects of the transition on Ayden Jane. When she is home and with people she knows and is familiar with she communicated easily and life is smooth. I think I sort of forgot how much time/effort it takes for her to 'process' people. First there is recognizing them. then there is learning to read them. That may sound a little strange, but Ayden Jane does sort of have to learn to read expressions of people one person at a time. It takes her a little while to be comfortable knowing if you are happy, or sad, or angry or joking. So the long hallway was filled those first weeks with all new faces.

The school nurse at her old school was wonderful and a huge support to Ayden Jane. Sometimes her body felt off but she needed help knowing if it was an okay off or a problem. Nurse Sharon always answered her with confidence and learned to read whether she was sick, needed a hug or just reassurance so she could stop worrying and get back to work. Her resource teacher, although not someone she saw every day made it clear to her that she was always available if she needed anything.

Here we are half way through the fourth grade and I am just realizing how 'alone' my kid has been this year. I don't really mean alone because her teacher absolutely loves her and her resource teacher also is fantastic. However, they are new to her... She is not comfortable communicating and therefore just does not do it effectively.

Add to all of this that I realized I have completely messed up her food. With my work schedule I leave before she is up most mornings and she pretty much gets her own breakfast. Lately, it has not been much. She eats a small bar, a piece of fruit and a slice of cheese. She does also get MCT oil and a bit of dark chocolate to wash it down. Ayden Jane used to be a major breakfast eater but over time she is just not too concerned about it.

Where the real trouble comes in, is that I thought she was eating snack at about 9:30-9:45 before special area. She is/was not. She was not eating snack until after 11. Then trying to do math. There have been some pretty significant behavior issues at this time (which I didn't know about last fall).

Piecing it all together, this week we begin adding in mandatory avocado at breakfast (unless Dad wants to cook sausage and eggs or something) and then have a bit bigger snack and eat it around 9:45 or so, before the 10:00 special area. Her lunchtime is not until 12:30 so hopefully this will power her through. Hoping for better learning, better behavior, happy kiddo...

Dr. Miller Visit

We headed south for our annual visit to Dr. Miller. It is always great to see her and let her squeeze Ayden Jane and chat with her and let us know where things look great and where we can make improvements. I knew this year we went into the holidays looking fantastic and was hoping to skip the winter slump. The flu messed with all of those plans, but at least Dr. Miller felt she still looked good. We definitely need to work on her core a bit, and I'm wondering if there will be anything to show up in the labs we just drew this week.

Ayden Jane seems a little off to me. I am not quite sure how to explain what I mean. Things like a little tired. Reduced exercise tolerance. Talking a big game and wanting to do things but just not being able to get motivated to get out the door and do them.

Bump in gh? Thyroid finally failing? She is sort of doomed there. 2 of my typical kids are hypothyroid and, of course, PWS raises that risk significantly. Vitamin D? Iron? So many things to keep track of.

We also decided to increase her Pitolisant dose slightly. Hopefully there will be some good results from that. In large part, it has just been a pain to cut the pill into quarters and I feel like it leads to dosing that is not consistent and a bit of loss. Today was day 2 which typically is rough. I'm not sure why, but in the past on day 2 Ayden Jane is usually quite tired, has a headache and is grumpy! So far today, it has not been bad so I'll take it! She did take a nap for about an hour and a half and recognized that she was tired and did not want to even try to run. Tomorrow, day 3, should be the rest of the adjustment and hopefully she will rock school on Monday.

Posting about my poor parenting effecting school tomorrow.

Snow

It may not seem like a huge deal depending on where you live, but most all kids in the south dream of the white stuff. Here, in coastal SC, it seems every 8-10 years we get a few inches of snow. Typically, the snow lasts about a day and then the temps rise right back to normal and it all melts away. This year, not so much. It has been a deep freeze here and the several inches of snow which fell on top of the layer of sleet and freezing rain have lasted for days!

Ayden Jane was so excited. She made a snowman, had a snowball fight and Gary even took her sledding! It was a golf course hill but when you live on the coastal plain, you find a hill where ever you can. There were other kids there and she had a blast. Only one near mishap when she was headed straight for the slightly frozen pond and apparently bailed off her sled just in the nick of time. The sled went out onto the ice then floated the ice on the other edge. Oh, did I mention her 'sled' was a boogie board? That's how beach kids sled.

Kayla and Mckenna were awesome and wandered the neighborhood through the snow and threw snowballs with her. Noah was less than impressed now that he has spent a few winters in the north.

So, here we are after just over 3 full weeks off school. No routine, a week of flu, Christmas excitement, snow and frigid temps... so many days of indoor activity. She/we are not used to this!!

She has learned to stay up late and sleep in. A skill I appreciate in the summer but I think it is going to be a rude awakening when she heads back to school on Tuesday. (schools out again tomorrow) It's cool that with Pitolisant the days of the 4, 5, even 6 AM wake up are gone!! At the same time, letting her get into the habit of sleeping in may not have been my best choice. It was wonderful for me though.

I will make an appointment to meet with her teachers this week. There are a few things we need to tweak from last semester. I was so spoiled last year with the bond Ayden Jane had with her teacher and the way her teacher just 'got her'. Not sure we will ever have that awesome a situation again, but I need to get my act in gear and help get the rest of this year back on track.

Happy New Year

As I read the New Year posts around social media and thought back on 2017 I realized it was a pretty amazing year.

At the start of 2017 Ayden Jane was not on pitolisant and the ability to import it from Germany was just being worked out. I knew we were headed to see Dr. Miller for our annual visit and had plans to ask her about starting Ayden Jane because we were in a rough place as far as being able to get through her day. She was struggling the second part of the day at school with focus and just being able to stay awake. She would either fall asleep after school or push through and be in bed by 6 in the evening. Just getting enough functioning hours to do school and a bit of exercise was a huge challenge.

We made it through the process, started Pitolisant, increased dose gradually and learned all we could along the way. Much of that is logged well here through last spring.

Then there was the brief hospital stay with pneumonia that came on fast and furious. So thankful to have amazing ER docs here that have taken the time to get to know Ayden Jane and are now on high alert for her.

Summer came and a wonderful family vacation to Busch Gardens.

I finished on job started a  new one.

Gary had his wrist reconstructed and it is rehabbed and doing great.

Kayla has figured out what she wants to do and hopefully acceptance to grad school will soon follow. She also was able to return to Honduras for a couple months and spend a week in El Salvador.

Noah has officially completed his undergrad degree and begun his graduate work.

Mckenna is rocking school, had a great spring HS soccer season and fall club season. She has done very well and enjoyed her music, both singing and learning piano. Her drawing has been so fun to see come pouring out. So much in that kid who knows where she will end up in life, although she is already narrowing down her college choices. 

Christmas 2017

After a week of sickness and living with the alternate life form Ayden Jane, she seemed to turn the corner just in time for Christmas Day. Gary had to work both Christmas Eve and Christmas night so we waited for him to get home from work on Christmas Day to open presents. Well, mostly.

It's always been a deal that the kids can open stockings when the get up whether there is parent supervision or not. It started back in the days when my kids waited for Grandma and Grandpa to come before Christmas morning could officially begin. Now it's more so we can stall for Gary to get home from work. Ayden Jane happily looked through her stocking and was so patient all morning. The funny part, however, was when the big kids came out she told them they could open their stockings and how much they would like the things like candy in them.... ummm, how did you know what was in them Ayden Jane? She giggled as she had searched through them all and had a wonderful time. (no worries of her eating candy - she is not interested in ruining her day.)

Opening presents is always fun with AJ. She thoroughly enjoys each gift as she goes along. Makes sure everyone has a gift, unwraps things slowly... The big excitement this year came when Santa had brought her a zip line! His elves are going to have to help put it up in the coming days (especially the one that goes back to college soon) In all, we did not go crazy with Ayden Jane's gifts and she declared it the best Christmas ever. I'll take it.

Now she is excited to have the greatest yard. She already has a trampoline, we finally got her swurfer up that she got for her birthday (It's a swing you stand on and ride like a surf board), and now a zip line! I love that she enjoys playing outside.

She also got a human anatomy factoid activity book and skeleton thing from Kayla. She spent a couple of hours today putting together the skeleton and doing some of the activities in the book. I had a hard time getting her to stop for supper! She now spouts off random facts about human anatomy. It's pretty great.

We are very much enjoying our time off school. I know I for one am not ready to return.

December

I have been terrible at posting things. There have been things to post, but I'm not going to back track now. We will see how break goes and maybe....

For now, we are dealing with sick Ayden Jane. It's her alter ego and we don't like it. Last week, the week of school before Christmas break, she had a bit of watery eyes and complaints of sore throat. We did not think much of it. Then on Sunday afternoon she was suddenly out of breath. By early Monday morning she was raging fever and obviously sick.

We took her to the pediatrician and he decided that although he did not hear anything, he was not to be fooled again by Ayden Jane so he put her on a pretty strong antibiotic. She did  not seem to get better and we took her to the ER Wednesday night because something needed to be done. Breathing treatment, steriods on board and labs drawn. We came home.

Friday morning we got a call from the ER that her blood culture came back positive (but without the specificity yet). They wanted us to go to her primary care pediatrician. He was not in the office today but our favorite ER doctor was so we headed back to the ER.

He started from scratch and found a positive flu test....  He also re ran the blood cultures. He is thinking it's possible the first run was positive by a contaminate (like from AJ's skin)  So, she is currently on cefdinir, tamilful, steriod, albuterol and ibuprofen. Had the fever Monday and Tuesday and has coughed, and coughed, and coughed since. Miserable, pitiful and MEAN.

Plan is: if blood culture negative, finish current meds and all should clear up. If culture positive for strep strain, then we will extend the cefdinir for a few more days than the 10 prescribed. If culture is positive for staph, we will have to return to the hospital for IV antibiotics.

NEED the coughing to stop so we can get on with Christmas festivities!