Tuesday, April 28, 2015

Weight Gain...

Ayden Jane is not "hungry." I mean not hungry in a Prader Willi Syndrome sort of way. She does not have a gnawing hunger, she is satisfied after she eats and walks right past food when she is busy playing. She is of the age where it is expected for her to feel a chronic hunger due to PWS. She is of the age where 'food security' in the form of supervision or at least keeping food out of sight should be a true need.

So when I say she is not hungry I mean not more so than a typical kid her age. Yes, she says I'm hungry sometimes. Yes, when her friends snack she wants to snack too. Yes, she likes to eat treats (I mean her own treats) just because they are good and not because she is hungry.

Now, I don't think her hunger and satiety signals work as well as typical kids, but it is more because the full signal is not really working.

So, why is this titled weight gain? Because we have come to the point where Ayden Jane gains weight easily. Her body, thanks to PWS, excels at storing any excess energy (calories) she eats. We have started to weigh her once or twice a week. At first Ayden Jane, in her competitive nature, was hoping for the highest number possible! We didn't make a deal one way or another about the numbers but I got her familiar with the idea of "healthy weight" and that it is different for different sizes and and ages. We talked about how when we eat more food than we need our bodies store it and our weight goes up. The trouble with this being now we have to carry around extra weight for everything we do.

I think she has it down now. She was at 82 pounds and her weight had a bit of a jump from her eating too many snacks. So it had climbed to about 84.  She sorted it out and was really excited she was back down to 83 after being a bit careful for a couple days. Then this past weekend we were on the road and ate poorly. We talked about how the choices we were making were going to add to her weight and she was going to have to work on that. I let it happen in part because I wanted her to see... for herself.

Sure enough Monday morning came and the scale read 85.5. The interesting part about it all is that Ayden Jane has taken it on like a mission to bring it back down. She made extra great choices yesterday and this morning it was down to 85.0.

Okay, so the point to all this is that Ayden Jane is definitely now in the category where weight gain happens so easily. I mean, just a few extra snacks or a couple meals out and pounds are added. So frustrating! On the flip side, Ayden Jane once again amazes me with how she just takes on the challenge. She told me not to worry, asked this morning if she should leave some of her breakfast because she wasn't really hungry and didn't want to store it and told me just to put 2 things in her lunch because after 2 things she isn't hungry any more. All without a worry or complaint.

I have never even heard the words "it isn't fair" from the kid. She just takes on challenge after challenge and is happy as can be.

Saturday, April 18, 2015

Training and Conversation

After last nights struggle with running we gave it another try tonight. I wanted to sort of rearrange her days anyway so that she did not have to try to run on days she has swimming. I am happy to report success!!!! We walked the 5 minutes, ran the full 5 minutes and walked home... more than the required 5 minutes. Ayden Jane started the running strong and then only about 2 minutes in she started to doubt herself. We sang a few silly songs - she loves that but then she asked if she could hold the timer. She ran holding onto it and watching it tick down. It was interesting that once she had it in her hand she calmed right down. At 5 minutes in she was actually cruising along pretty well and I think we just might make it 6 minutes at our next training run.  Yay!!

I really have no idea how much of the 5k she will be able to run but days like today make her so proud of herself.

Now earlier in the day we took the dogs for a walk. And yes, it was one of  'those' walks. You know the ones where her mind is in full gear. The topic of conversation was well complicated. I'll do my best.

We have started weighing Ayden Jane about once a week. I don't make a deal out of it but she knows what numbers it says and that we are trying to just not let the number go up. She had a bit of again this past week and I had told her (a few days ago when we weighed her) that I thought the cause was related to her snacking more than she needs. I have given her a bit more control over food and she is down at the neighbors a lot so she is making more of her own choices. Luckily she really wants to make the good ones. Mostly, she wanted to know why if a food was something she is allowed to eat, it can be too much for her.

We had a long conversation about how there needs to be a balance between the amount of food/energy we eat and how much we use up. I explained how if we eat more energy than we can use, our bodies will store it and then we have to just carry it around and it makes things like running and climbing and monkey bars harder to do.

It was hard to tell her that her body, because of PWS, makes these things even harder to balance. That her body is not good at using any of that stored energy but very good at storing it. We talked about how extra snacks that she does not need will add up.

I did not push things and didn't use the words skinny or fat. Her understanding and just plain acceptance that her body works differently is astounding. Seriously. She is 7 and is perfectly happy to skip all sugars and eat a diet different from her friends. She knows she can't really trust her body to tell her when she needs food and when she full. Add to all of this, new information of just how challenging it is to balance all of this.

Her response? I get it mom. And now I know why sometimes the answer to things is yes and other times it's no. You are just trying to keep my balance and some days are different than others. She really is amazing.

Friday, April 17, 2015

Training is Hard

We are learning that training is hard. Well, being a kid and having full active days - and training is hard!

Also, I am really trying to figure out shoes. I bought Ayden Jane new 'jump highers' (sneakers) since she had really worn down the old ones. I was thinking with starting to run and walk and 'train' it would be a good idea. She has really broken down the inside of her right shoe in particular. Now she is complaining that her ankles hurt when she runs. Mind you, she can run all over like a crazy child barefoot.  Hmmmm.  Maybe her legs are using the right muscles now and are sore? Maybe the shoes are not a good idea?

Once, a while ago, I think I remember Mr. Alan saying that if she is going to do some running she might need running shoes without her orthotics in? Am I crazy?

I just don't like the idea of making something that is really hard for Ayden Jane ... even more challenging.  I sent a message to the amazing Mrs. Jen and hopefully we can get to the bottom of it.

Today's training update is tears. Wanting to do well, hurting and not able to do it... Praying our next run will go well.

Wednesday, April 15, 2015


Ayden Jane is on Wednesday of week 2 for this training program. That puts her on target to run her first 5k at the One Small Step race in Spartanburg! She has taken on the challenge with our friend Gwyn (mom to Ellie). They are checking in with each other after completing training.

Ayden Jane is really excited for this and I am not sure how much of the running she can do, but so far she is determined.

Tonight we learned the valuable lesson that it is better to run before supper rather than after. She had a big supper - well, too much soup and likely a bit of pool water after swim team. Definitely had the sloshing, big belly working. She pushed through it though because Mrs. Gwyn had sent her a picture earlier in the day and AJ will not be out done!

During the walking part Ayden Jane asked me about raising money with the run. It was sweet as she wanted to know why people donate money because she is running. Or why do they want to help find answers to Prader Willi Syndrome. Mostly, she likes to hear that people send money because they love her.

I am going to let her get another week into the training before doing much else to promote the fund raising part but how can you resist a kid who wants to take on big challenges (on top of all she already does) to help raise funds for researchers and incredible doctors like Dr. Miller who believe in her and her friends.

Here is the link to her fundraising page. We will have to come up with some way to show her all those people who are rooting for her - like the paper chain she made last time. Let me know if you have any ideas!

Monday, April 13, 2015


Hunger and satiety signals in Prader Willi Syndrome are known to be off. This we all know... I'd say for Ayden Jane the hunger signal never tried to take over but she sort of felt hungry as her first response to lacking energy. Often this was just when she was tired - sort of like when we all want to munch late at night. (we know we aren't really hungry...) or bored... The good thing is all I needed to do was remind her she just ate and she would move on.

On the flip side, I don't know that I very often heard Ayden Jane say she was full. She was done and not hungry when her plate was clean but she didn't really feel full.

Since last fall when Ayden Jane gave up artificial sweeteners (or it could be lactoferrin or the addition of MCT ... but I think it is the sweeteners) Ayden Jane has slowly started to know when she is full. She has said she is tired and chosen not to eat, just to rest. She asks a lot of questions like, "should I be hungry?" Most of them are her way of confirming what she thinks her body is saying.

Over the past few weeks I have tried to let her read her own body and be more in control of when, what and how much food she needs. Honestly, it is a little scary. Letting her choose to play through lunch and learn to realize when it is getting too long and she HAS to stop and eat. Giving her a little more leeway in what she eats. She has asked me a few times lately to check her blood. She is trying to understand how to read all those signals that the rest of us take for granted.

So far she is doing great. Obviously, just like any other 7 year old, she is not totally on her own as it comes to food, but I am trying to give her a typical amount of independence, after all, that is our long term goal. It seems like the signals are there, just weak. She has to pay close attention to her body to read them correctly but she CAN do it. I'll take it!

Saturday, April 11, 2015

Spring Break

Wow, spring break has flown by. The weather has been great and Ayden Jane has had a wonderful time. She has made it to the beach, we discovered the pool is warm enough to swim in and she has had fun with several friends.

Monday we return to school for 8 more weeks and I am looking forward to seeing continued gains academically for Ayden Jane. So many things are starting to fly together for her...

She is back to full strength or at least fully healthy. The other day as we were walking the dogs she decided to run home with Tucker. It was just about 200 yds from the house where she started running but it was so cute when I caught up with Sadie. Ayden Jane was calling to me, "Mom! See I really am all better. Even my air works again! I don't have to stop to find my air when I run." (I love how kids phrase things)

We talked a bit over break about an upcoming OSS run/walk in Spartanburg. Ayden Jane has declared herself capable of running the entire 5k. I'm not sure I'm convinced she can do it but I will give it a go with her. I asked her when she wanted to start training and she says Monday. We'll see... That will be her first day back at school after spring break, she has swim team and Mckenna has a soccer game. Well, maybe we can start the Monday after soccer season ends!

I think I will look for a couch to 5k program just to have a plan. If I can sell it to Ayden Jane as a plan from an expert ... it might alleviate some 'discussion' as to what and how much to run as we 'train'. Basically, Ayden Jane tends to set her sights super high and either push so hard and reach them she no longer enjoys it or gets very frustrated that she can't attain her own ridiculous goals and gives up.

I need to find a good way to incorporate the fitbit and I think a little friendly competition between herself and a friend will keep it fun. Her friend, K is working toward running his first 5k as well. Wish us luck! 

Tuesday, April 7, 2015

The Great Disappearing Act

We finally had a beautiful day. We have waited for beautiful spring weather for quite some time around here. No, we have not had snow or crazy cold or anything. Just rain... Not flooding rains, just gloomy gray days that keep everything damp and yucky.

So what do kids do when the sun finally comes out? Play, play, play outside and lose their minds a little bit. Ayden Jane has some great new friends in the neighborhood. The kids all love to be outside and are full of energy. There have been a few times here and there where they have all ridden bikes and jumped on the trampoline and just generally had fun but it seems between busy schedules and and yucky weather it is always cut short.

Ayden Jane headed out to play about 11:30 after we got home from and Easter egg hunt. I asked AJ about lunch but she said she wasn't hungry. I could see them all out back on the swings and trampoline. Sometimes I could not see them but I could hear them nearby riding bikes or roller blades... Finally around 2:30 I decided since Ayden Jane was not interested in coming in to eat I would take her a keto candy and a cheese stick. Trouble was I could not see or hear them.

I headed down to the neighbors to see if they had slipped inside for a snack or something. Nope.

So on this first wide open beautiful SC afternoon of spring break the kids decided it would be fun to head to the playground. Only problem is, the playground is 0.8 miles away, out of our neighborhood and across a busy road. Oh, and did I mention the kids are 7, 6 and almost 5.... Yeah. Not a great idea!

They all made it back safely and definite rules are now in play so we do not expect any sort of a repeat performance!

My favorite part of the whole experience though was Noah's response. I was texting with him as he and Mckenna were off doing something together and asking me about it. I told him what was up and he reminded me that he did the same thing. Basically, yes, she needed to be reigned in and boundaries set ect.  But in the end he was pretty proud of his little sister for being a typical fearless kid who in the end, played outside for about 5 hours on the day.