Exercise - part 2

Ayden Jane has taught me that life with PWS is the perfect model of the phrase "use it or lose it."

We have gone on our walk 4 days in a row now. The first day I was surprised to see Ayden Jane break out in a sweat early on and be very sleepy in the early afternoon. Day 2 was slightly better, but she still was tired... I will say that both days I loved her ability to sit and focus after the walk!

Day 3 she started out saying it was our day to run. Remember we had worked up to running a good solid consecutive 20 minutes. After a minute or two she was exasperated and declared running was not a good plan. We talked about it and she accepted that after being sick and the time off we needed to just work up to running again.

Plan in place is that we will do the full 1.6 miles every morning. That we will walk one day, run the the next day....  The running we did for the first run day was 5 minutes. She wanted to go home straight away after but I re explained the deal. We go 1 1/2 miles every day, just the amount of it we run will vary. So far she has totally bought in so tomorrow is run day and we will up the number of minutes we run. It's all an adventure to keep exercise interesting and Ayden Jane motivated. It's not hurting me an either.

The other part of the plan is that she is to go 10,000 steps a day on her fitbit. With the help of our early morning exercise, she generally has about 5000 steps by 9 am. The fact that part of most days is spent in water where she gets no reading keeps this goal challenging.

Next on her list of motivators is that she has her scoliosis x-rays coming up August 6. Jen (PT) has told her that if her x-rays look great and her right leg looks great from all the walking/running she will either let her have much smaller inserts in her shoes or a trial run of NO orthotics.  Ayden Jane is over the moon excited about this possibility. She also knows part of the deal will be that if she gets the go ahead on no orthotics then she will have to keep walking/running to keep things strong. Mrs. Jen will be checking up on her!

Finally, she is going to run the inflatable 5k in Rock Hill SC in October with Dr. Miller and her daughter A. It should be a blast!! One lucky little kid we have that so many people are in her corner.

Exercise

A lot of the challenges of PWS are related to food. Limits on what she can eat and to some extent, how much. Remembering to drink liquids, not using artificial sweeteners or sugar, being mindful when away from home.

This is only one variable in the equation however. Exercise has never really been a problem for Ayden Jane. She and I did lots of things together that often included walking dogs, riding bikes to the playground, taking a walk on the beach, even heading to Walmart and wandering the store can be turned into extra steps and exercise.

This summer, we started with being sick. Then traveled a bit and now she would just rather hang out with her friends. "Playing" seemed like exercise to Ayden Jane so getting her out to do something else was getting to be a problem. I thought through it, emailed Dr. Miller to see if I was crazy and decided it was time to explain to Ayden Jane that playing and exercise are different things. Both are good, but they are not equal. It used to be that exercise was a given so adjusting food was all that was needed for weight maintenance. She has been getting frustrated that she has been good about food and her 'number' is not where she wants it.

I told Ayden Jane that because of PWS she needs to exercise everyday. That just playing around in the pool, swinging on the swings with her friends, painting and coloring, even catching bugs is not the exercise she needs.

She was upset at first but soon into the conversation I realized her concern was less about the exercise and more about making sure she was not missing out on anything. So we just figured out how she can have it all. Basically, we backed up breakfast a little and we are walking/running 1 1/2 miles every morning. She knows there is no heading to neighbors before 9:00 and no neighbor kids allowed at our door before then so as long as we are sure to be done by then Ayden Jane is in.

Today was day 3 and Ayden Jane is getting more and more happy with the whole plan. Whew. The timing was good because her replacement fitbit just came and she loves that she starts her day with nearly 5000 steps. I can say she has lost a LOT of stamina over the past month. I'm excited that her goal is to get back to the point where she can run the full mile and a half. Sounds like a perfect goal to me.

Summer Fun

I have umpteen posts in my head... Just going to start with one and do my best to get back to writing regularly.

Ayden Jane has had such an amazing burst of social skills. I really don't know what has brought it on, but I am guessing it has been a magical combination of MCT, growing up and neighborhood friends.

I'll start with the MCT oil. It is interesting stuff and I honestly don't understand it. (which always makes me a little nervous). There is no denying that it really keeps her brain going though. With it, she just processes pretty much everything faster. What does that mean? It means the fast paced conversations of kids, the rules to games she wants to join, the ebb and flow of the day are understood and followed quickly enough that she can keep up and not frustrate others.

I do think that some of her skills are just the result of getting a bit older. She was a little delayed with speech and it seems like the slower processing and challenges getting her words out put her behind in this area. She has been gaining ground for a good while and now she is partially just catching up finally.

Neighborhood friends have been a huge help as well. Ayden Jane has had friends but none she can just run out the door and find and play with. Growing up in a world of therapy, older siblings, doctors and lots of medical talk does not exactly give you good peer relation skills. Being that I am an old mom, most of my friends don't have kids Ayden Jane's age and I just haven't made myself find others to spend time with. I feel bad sometimes as I think back to the families we just did life with when the big kids were little and how much time they spent with great families of friends... The neighbors have a daughter AJ's age and a son 2 years younger and the three of them have become quite the trio. The parents are wonderful as they are not worried or bothered by Ayden Jane's extra needs and they have taught their children to be the same way.

So, how do I know there are new social skills pouring forth? That it's not just comfort with neighbor kids? I see it in new situations. I see it at the beach when just AJ and I are there and she meets up with new kids or even just kids she only slightly knows. She catches on much more quickly to games and is relaxed and happy, and the other kids are inviting her to join in. I see it on the sidelines of the soccer games as she joins in and kicks a soccer ball with a new friend or I watch another friend run by and say, "tag, your it" and Ayden Jane immediately respond by taking off running after her.

She's relaxed and 'on the same page' with the other kids. She is not trying to analyze things or asking a million questions on the rules of the game. Even just the body language of the interactions is that of mutually enjoying playing or chatting together.

It feels strange that Ayden Jane didn't always have adequate social skills. It almost seems strange to remember that she has spent most of her years a step behind the action. I am excited to see how these skills play out in school next fall with a new classroom of students.

Recovery and Travel

After the race weekend we had a few days at home and then off to the next adventure. It was a soccer road trip to watch Mckenna play. Ayden Jane loves 'soccer adventures' as I call them and Grandma even came this time so we were set.

It is an entire understatement to say it was hot. It was crazy hot. It was honestly, unhealthy hot for Ayden Jane. She is pretty used to heat living here in SC. However, if she goes out to play when the temps are in the 90's she doesn't stay out long. She comes in to cool off ect.  On the soccer fields it was 95 plus and we were out there for 2 1/2 hours.... Even in the shade Ayden Jane just melted. 

On the bright side, the times of Mckenna's games worked out so we could go to the Greensboro Science Center. Ayden Jane had a BLAST. She is so much fun to take to things because she wants to see, hear and read it all. She even cornered the docent and grilled him with questions. AJ enters the exhibit and goes methodically around. She likes to look for the animals, read the information and notice everything before moving on to the next. It's a stark contrast to taking Noah when he was little. His method was more in the, look at that - zoom.  Look at that - zoom. In 3 minutes, all done!

Since we have been back Ayden Jane has shown some signs that she is struggling a bit to recover. I suppose I shouldn't be surprised. I mean, she had pneumonia and then ran 5k and then went on a road trip. I also think the heat really ran her down. Today it seemed like she finally regained her energy. We will return to running next week and settle into summer!!!

Racing - with pneumonia

Wow. Time is flying!!!

I can't believe June is halfway over. We have been so busy with the end of school and training and preparations for the One Small Step run that I haven't made time for much else.

Ayden Jane did such an amazing job training and running through the couch to 5K training plan. The second to last week her running was finally hitting a great stride and I was excited to see how great she would do after one more week of training.

Then last weekend she just seemed tired. I passed it off as just your typical last week of school combined with sunny skies and lots of summer fun sort of tired. We started our day with a run and she could only manage a few minutes. I told her that sometimes you just have a bad day...As the day wore on Monday I was pretty sure I needed to get her checked out. Ayden Jane started on a campaign to prove she was fine and could go outside and run around and play with her friends... She was being quite the ham doing impromptu commercials and other silliness. I made the appointment for Tuesday morning anyway.

She woke up full of energy and I even asked Gary at one point if I was crazy and should I just cancel the appointment. Wisely he told me to just take her to be safe. I thought through and sure enough, it had been a good 2 weeks plus since Ayden Jane had first mentioned her throat being scratchy, coughing a bit ect... And about a week since her voice had gotten a thick cruddy sound with an occasional cough that sounded a bit like Ayden Jane was going to choke. Sparing you all the details, we headed home with a diagnosis of walking pneumonia and a script for antibiotics.

Not really what you want 4 days before a race!

She ran well for the first mile and then she asked, "why does my chest hurt so bad?" Ummm maybe because you've had pneumonia.... Next up and I think even tougher on her the gastro side effects of antibiotics and the need for a restroom came upon her. The second half of the race was not pretty. She felt horrible but she wanted to finish so on we forged. I was trying to decide what was worse, letting her push herself to the brink and finish this thing, or having to spend the next who knows how many months listening to her complain to me that it was all my fault she didn't finish because I made her stop. I chose poor parenting choice one.

Everyone has been so great to her, telling her how proud of her they are that she finished even when she didn't feel well. She says thank you and is pretty quiet about the whole thing. When it's just the two of us she says, "you know Mom, I didn't really do it. I didn't run the whole thing." It's going to drive her crazy until she completes one.

And there, in a nutshell, is what is so incredibly amazing about this kid. Pneumonia and all she does not cut herself any slack but also doesn't get down. I mean come on! She is s a seven year old kid and I would think that her biggest reaction from the whole experience would be to decide never to run again!!

Instead, on the way home in the car (after a 2 hour nap) she started talking about her next race. I told her I thought after a few weeks off we could start running again. I was quickly corrected and informed we would be running THIS week. Even after I reminded her that she would do plenty of running at soccer camp she was not satisfied. She has declared we need to do at least two 30 minute runs per week. I suggested 20 minute runs but was shot down...

So still on antibiotics but gaining strength daily. Big dreams and expectations intact. Next race scheduled for October. Now it's summer for real...

PWS Awareness month - wrap up

First of all, I most want to say Thank You. The love and support we have been blessed with over the past seven years has made all the difference in our lives. I know many of you pray regularly for Ayden Jane and our whole family. It is a gift. So many of you have pitched in and cared for our big kids when we couldn't. You have blessed us financially as we strive to help fund the life changing research going on. You have taken time to care and to listen. You have loved Ayden Jane and not been deterred by the extra time or care she needs sometimes.

As this years edition of PWS posts come to a close, what is most on my mind is how much less I have to say about PWS at this point. Wait. Maybe it's not less as I have tons of information packed in this head of mine that has been acquired over the past 7 years. Maybe it's just different? Maybe I mean it's more organized and scientific. Or is it just less fearful?

How different would the last 7 years have been if I had been given a crystal ball and seen Ayden Jane doing what she did today. Enjoying children's church and singing songs, running, playing with the neighbor kids, doing flips into the pool with the gang, reading to me before bed. If I had heard the words come from her that I heard after lunch today. "Mom, I need to rest my belly. It is really full." 

The feeling of racing against time has finally subsided. The constant push of therapies and checking off milestones and trying to balance supplements and even just deciding which supplements were helping. Searching for doctors who were open minded with what we were doing and up on current research. All the while second guessing myself and devouring every word of reading material and research I could get my hands on.

The worry about whether the decisions to move away from conventional dietary protocol for PWS and the incredible weight of that decision is gone. I know without a shadow of a doubt that the choices we made very early on were right for Ayden Jane. Not perfect, because I don't think there is a perfect, but right. 

The waiting to see which of the long list of challenges that come with PWS would rear its head is over. I believe that whatever challenges may still come our way we will be able to deal with them but I won't be surprised if there aren't many.

The shadow that always seemed to lurk in my mind that one day Ayden Jane would wake up and all the terrible predictions her first doctors had about her life and our lives together would come true is finally no longer noticeable. 

Ayden Jane has gone from my silent, motionless and non responsive little one in NICU, through a host of possible diagnosis which did not offer us much hope and ultimately diagnosed with PWS to an amazing little girl who truly lives life with an enthusiasm that is unmatched. She has no idea that she is supposed to have limitations and has dreams well beyond what we could have hoped for.

I am thankful that the stressful, lonely early years of trying to figure this all out on our own are behind us and get a tremendous joy out of seeing younger children with PWS continue to defy and rewrite the old textbooks of what life with PWS is supposed to look like. 

With great excitement I look forward to the hope being offered in research. With joy I talk to parents who have just received that terrible news of diagnosis and offer them hope. Not promises that their child will not struggle or that there is a magic formula to make up for those missing genes, but a glimpse of the future. An example of a happy, energy filled little girl who continues to take on life with a positive attitude and an unmatched determination.

Race Update

So many people supporting Ayden Jane - she feels the love and support!! She gets so excited with the shirt filling up. She grins and jumps up and down. It's adorable. The money, well she doesn't really get the values too much but is happy that she is doing something to help find answers for herself and all her friends. I think in the end, it is just so great for her to be able to feel like she is taking charge of the syndrome in some way and know that lots of people are willing to help.

Ayden Jane is still into the running. She has run 17 minutes consecutive and will be at 20 by the end of the week. She has been great about going and I pretty much just let her run as slow as she wants... I figure it's as much about the commitment of time and effort as it is about racing.

No idea how race day will actually go. Her pace is painfully slow so the 30 minute run our training program works up to is only going to cover the first couple miles. I am sure typically, those who have followed the plan are not finishing the entire race in 30 minutes, (it is couch to 5k) but that race day excitement gets them through the extra 5-10 minutes necessary. Hoping for the best.

What I do know is that we are going to make crossing that finish line a BIG deal. She has stuck to a program of running for 8 weeks already and that's an achievement!!

Since it is hot here in South Carolina, we wait until evening to run. The only problem with that is often the running comes after a fun filled day of boogie boarding, playing in the ocean and swimming in the pool. She has been sun drained and literally spent hours in the water and still drug her little body out to run.

Here is the link again if you are interested in adding your name to her list of supporters! She has the entire front of her shirt totally available!!

http://onesmallstep.fpwr.org/dw/users/teampwsparents/spartanburg2015