Saturday, July 30, 2016

Interesting Summer

Obviously, if you are reading this blog you know a bit about Prader Willi Syndrome. The 'hallmark' of the disorder is supposed to be hunger ... insatiable hunger. This hunger is supposed to start at varying ages but certainly should be a part of Ayden Jane's life at this point.

We have seen the PWS hunger a few times. It generally comes when she is ill. I still don't quite understand why that is the case, but it seems Ayden Jane is not alone in her response to illness. I also see her misinterpret tired for hunger. Even those of us without PWS do this to an extent. You know, the late night munchies when what your body actually needs is to go to bed? Well, just magnify that by a ton.

Ayden Jane has learned to listen closely to her body and interpret the cues well. She refers to hunger as her brain being hungry or her belly being hungry. Her brain needs a snack sometimes between meals. She says she is not really hungry, but her brain starts to crash so she needs food. Then at meal times her belly is hungry. She is doing great with it all and has learned to recognize the brain crashing feeling before it's crashed too much and realized she only needs a small snack to be right back on track - like a blueberry bite or keto chocolate.

The interesting part this summer is that Ayden Jane is a little off right now. She is just struggling to power her typical activity, is having trouble tolerating the heat, and getting 'stuck' more than usual. It's not extreme or anything, just enough that I feel like I am banging my head against a wall a few times a day. Most people probably just notice that she is a bit slower getting her thoughts out. We are working on it and Dr. Miller has labs that will hopefully give us some clues.

I am really curious, though, because usually when she is struggling to power her little body and brain, it sets off hunger cues. This time, however, she is not hungry or concerned about food. She has cut her breakfast back to half of what she typically eats. She sometimes has a morning snack and sometimes not. She is in no hurry for lunch... It is so strange. I have had to remind her to eat. Over the past 2 months she has even lost 4.5 pounds. I know that does not sound like a lot, but it's pretty significant for a kid with PWS.

It will be interesting to see just what those labs tell Dr. Miller.

Friday, July 29, 2016


It's been a quieter week this week and I have to say it is nice. Another huge flurry is coming soon just as the school year is right around the corner. We are catching our breath a bit and Ayden Jane has remembered how to entertain herself when she does not have a pack of friends around. I enjoy listening to her talk to her babies and pretend all sorts of things. She has also managed to get some extra rest which is good because I think things are really going to get crazy soon!

I have been waiting to get a summary of what Dr. Miller thinks about her recent labs, and of course, that can't come soon enough to make me happy. A couple things were off a little and likely they mean nothing but.... a mom always wonders.

It has been HOT. Not so much that the thermometer has said sky high numbers, but the humidity of late summer in South Carolina hot. It has made activity tough. We have all but stopped running, we do manage a bit of walking with the dogs but even that has been cut short. The pool is so warm that it is even more sleep provoking than anything.

Ayden Jane had art camp in the mornings this week so any chance we had to get out and moving was pretty well blown in the morning. Evenings just don't cool down quickly enough.

I was a little concerned that her weight would begin to climb as we chilled out in the air conditioning but she is still holding steady. I can hardly even write that sentence. I really do not like have to think about the weight of my 8 year old and it is such a tricky balance to help her watch it without getting worried. I am not looking forward to the coming years where it will be a bigger deal among friends...

I will say that she is doing so great as it comes to food. She is just not that hungry lately and has cut breakfast way back. She is sometimes has a morning snack but I actually had to talk her into one the other day before art camp. I really did not think she had enough in her to make it through. One day this week she had lunch at 12:30 and then turned down supper at 5:30. She did not eat again until breakfast the next morning. All her choice...

Her swim team had an ice cream party that I did not know they were going to have so I had nothing for Ayden Jane. I panicked a little because I thought she would get upset but nope. She just said she didn't care about the ice cream, she just wanted her medal and ribbons for the season. I don't know what she would have done if I had not been there but I like to think she would have said no thank you.

Saturday, July 23, 2016

Lots of Randomness

Today was the last swim meet of the summer. Ayden Jane enjoyed it all I think, but honestly, we have been so busy she didn't make many practices. And of course there was the whole iron thing...

She swam in 2 meets before today and her best times were recorded on the heat sheet. I have not kept track in the least so I relied on it for my reference point. Ayden Jane dropped her time by an average of 5 seconds in each event. I wish I could say it is because she worked hard and was improving her stroke ect...  I suspect, however, that it was the iron.

She played on the playground between races and at one point the kid even did several monkey bars!! The hard ones. The ones that aren't actually bars but are hanging rings. She has NEVER come close to that. Iron anyone?

Still fun to be had this summer as she has art camp next week in the mornings and a couple friends who want to play in the afternoons. She also needs to be brushed back up on school work as 3rd grade is coming, like it or not!

Looking toward fall, I'm struggling with deciding what activities will be good. Ayden Jane wants to do EVERYTHING, of course. I can't handle being her personal cab driver and she will need time for school work. Have I mentioned I hate homework?

So far it looks like the travel soccer team she wanted to play on will not have enough girls. There is an extremely strong group in her age and they were trying to get a second team that she would fit well on. Since that is not looking good, she will likely want to play rec soccer again, which is fine. Then there is swim team. She has her eye set on a year round team that is a bit more intense than the one she is on - mostly because her 'best friend' is on that team. Not sure yet if I can handle that commitment.

Next, she wants to continue golf. Only problem is, we heard from the golf coach that Ayden Jane has not been coachable. Not really surprised as she would argue with a rock but... not wasting the money if she is not going to take instruction. Lastly is the girls on the run program. I would love for her to do that but she is not super excited about the whole running thing right now....

It's hard because I know the struggle with running was the iron, however, if I tell her then she will get very upset and it will take forever for her to trust me again. I'm hoping that instead we will just get a good few runs in and she will be back to loving it.

Saturday, July 16, 2016

So Slack

I have just not made time this summer to keep up with the blog. I'm not sure how this summer got so busy!! Ayden Jane has gone to 2 weeks of soccer camp (more or less), flown to Boston, gone to space camp, done vacation bible school, swam on swim team, goes to golf camp next week and then art camp the week after!! She hears about something and she wants to try it.

Between, or before, or after camps we have spent plenty of time in the pool and a fair amount of time on the beach. Need more beach time... I should be able to make that happen :)

Summer has gone well but I did learn something. Apparently, iron is really important for Ayden Jane. Here's how I know. Summer hit and mornings became more casual. I did not do as great a job with supplements and iron is one that I skipped more frequently. Still not a problem. Then I was just about out before I sent AJ to Boston with Kayla but wasn't worried. It was just a few days. When they got back I gave Ayden Jane a few days here and there the next week what I had left and then just never got around to ordering more. I mean, it's not like she ever tested deficient.

Over the past two weeks Ayden Jane had become very high maintenance. She was tired, but I just figured the crazy schedule was catching up to her. She was argumentative - I mean more so than usual.  To an extent she was just mean and over emotional. Also her running was not going well. Her stamina had crashed and she was really upset about it.

I was still clueless.

It was time for labs so Dr. Miller emailed me the lab request.When I looked over it I saw iron on it. I suddenly remembered I never ordered the iron. Two more days of behavior, tiredness and a lack of fun. I got her labs drawn and then the iron came in.  Honestly, I didn't think the stuff we were dealing with would be iron related but sometimes you just feel like you have to try something... anything.

In 24 hours she was a totally different kid! Happy, easy going, full of energy, and reasonable. She has stayed that way for a couple days now.

When will I learn?? Don't mess with this kids supplements.

Tuesday, July 5, 2016


This is very late in coming. I guess I get a pass because this past week has just been a blur all the way around with the passing of my Dad.

Kayla had planned a trip to Boston to visit the famous Allie. (her college roommate whom we consider an additional daughter). At the last minute - as in during the day Kayla was to leave - Kayla and I decided to send Ayden Jane with her. Kayla is brave!!!

It was a Thursday night flight, not departing until 10 something. Then it was delayed... Ayden Jane was determined to stay awake to get on the plane. She made it and off they flew around midnight. It was Ayden Jane's first flight and she did great.

While in Boston the girls spoiled her. They went to a lake and kayaked. They took her to a water park. They saw finding Dory.  They walked Allie's dogs. Those were just the highlights.

I hear there was a pretty good meltdown on Saturday night. but I'd say AJ gets a pass considering she was up so late traveling and had such a huge couple days.

As for food? She was awesome. The girls had no problem with her and the choices she made. They ate out frequently and ask Ayden Jane says, "just made good choices." The day after they arrived home I had Ayden Jane 'check her number' and she had actually lost 2 pounds while they were gone. Sounds great to me. I mean, who loses weight on vacation? Ayden Jane was so proud of herself for doing a great job with food and exercise and all without Mom! (she even wanted me to email dr. miller and tell her)

To top it all off. she arrived back at MB airport Monday morning at 7:20 and the first thing she said was, "mom, what time is soccer camp today?" She had to get up around 3:30 in Boston so I figured she would skip soccer Monday. Apparently she had other ideas. It was one of those ideas she got in her head and there was no stopping her. I'm pretty sure she was completely useless at soccer, but she made herself physically stay awake and be there. She's nuts.