Sunday, October 27, 2013

One Small Step

Yesterday was the big day.  So many pictures will come, but I just can't wait for them to post about our day.  We got up and had breakfast.  I packed long pants for AJ because it was going to be COLD (by SC standards anyway) but Ayden Jane had running shorts in mind.  She informed me that she had a race to run and that she had to wear running shorts to do good in the race.  No sense in arguing that point.  We arrived and Kayla and the Clemson crew were already there so off she went. 
First up was the kids fun run.  Ayden Jane was not interested at first because she was there to do the big run!  She changed her tune to help her little friend Ellie make it around the course.  Very cute. 
Then off to the big run! We started and were going to walk with Daddy and Gwyn and Ellie.  After Ayden Jane heard Gwyn say the winners got medals she decided we needed to run.  We ditched Gwyn, Ellie and Daddy!  As we were running AJ was telling me how she hoped I was ready because she was going to run the entire race so she could get a medal.  I know enough to just agree...  Honestly she surprised me how far she actually did run!  She may run cross country yet!
As we walked Ayden Jane just kept telling me how so many people were cheering her on and how so many people loved her.  She was amazed that all these people came to walk with her. Ha!  She finally conceded that a few were there for Ellie and Riden, but was still pretty sure most of them were there for her.  You gotta love that kind of confidence.
We finished the whole distance and she was very proud of herself.  Mckenna, Kayla and the Clemson crew were at the finish and ran the last part with her.  So sweet.
Once the business of the day was done AJ was off to play and make new friends.  You'd think she would be tired, but she hit the bouncy house and blow up slide hard and kept at it!  We rounded out her day with a visit to Ellie's house which thankfully Gwyn was willing to let us check of her agenda.  All in all it was an awesome day.  Ayden Jane knew she had accomplished something great.  She knew the whole world loved and supported her and asked as we walked, about the names on her chain.  She left feeling like somehow things are a little closer to solving PWS and 'fixing her Krebs cycle'.  I know that feeling of love and support will surround her and hold her up when PWS tries to knock her down.
Ya'll are amazing.  I cannot thank you enough for taking time, sending money, saying prayers, stopping to ask her about her run...  As her mom, I want to take away all the struggles and fix the challenges.  I want to keep her safe physically and emotionally.  I want her to be happy.  Yep, pretty much the same as every mom wants.  Only, when your kid works so hard at .... everything and is seemingly only one illness away from a cascade of problems life is stressful.  We do our best to keep life as typical as possible for Ayden Jane, but just the fact that she knows what a Krebs cycle is and can discuss nutrition, supplements and blood levels at age 6 tells you there is only so much we can do.  Taking this journey with people like all of you makes the stress bearable and the joys and accomplishments so much sweeter.  Hopefully you can see the giant grin on the amazing Ayden Jane.

And just in case you missed the link to Ayden Jane's fundraising page (the kid brought in nearly 1300 dollars!)  Here it is: Ayden Jane's page

Friday, October 25, 2013

The Big Day is Tomorrow!

Yesterday I picked Ayden Jane up from school and her teacher said, as AJ was getting in the car, "have a good time on your trip this weekend."  Apparently, all AJ talked about all day was how we were going to Spartanburg.  It was very cute.  I am not sure we could have handled all the excitement, but we got some help because it was a busy night.  Ayden Jane had a soccer game and then a fall festival at school.  Lots of activity, lots of friends, lots of things to occupy all her energy!

She had trouble going to sleep but thankfully slept well.  She was up bright and early and after us to get going!  She and Gary took the dogs for some exercise before we left (and of course it was our way of running off some wiggles for AJ)  She talked nearly the entire 4 hours to Spartanburg.  We had hoped that if we ran her in the morning and left around lunch that she would sleep.  We walked around for the evening and had supper and introduced Ayden Jane to toys r us.  Yea, she liked it.

It seems like we have been talking about the 'big race' for so long.  I can't believe it is here!  We even have a few links to add to our chain yet.  We are taking it with us so we can get a picture of AJ with her chain by the OSS sign.  It will need to be blown up and saved.  It will be so much fun to retell the story of how she decided to take matters into her own hands and go 5k to fix her Krebs cycle.


Saturday, October 19, 2013

Excitement is Building

When Ayden Jane first decided to do the One Small Step 5K she was so excited and was ready to go.  She wore me out walking and deciding to go extra times....  Then, as her excitement waned we started her chain.  Excitement once again through the roof!!  Well, as things became busy and the numbers of chain links being added slowed... the race again started to seem very far off.

Today we were talking and I told her that it was just one week away.  She could grasp that and was ready to head out the door and hit the trail hard.  We walked and talked,... and talked... and, well you get the idea.  I told her how there would be a kids run and the big run.  She said she wanted to do the big run because so many people were cheering her on.  Very cute.

We also talked about how she will meet other kids with Prader-Willi Syndrome.  She thinks that is cool, but there is some curiosity there as well.  I don't think Ayden Jane really feels like she is all that different from her friends and is only just starting to realize that not all kids do therapies, blood draws and have several doctors.  I'd have to agree with her that she is mostly just a typical Kindergartener.  It will be interesting.

We definitely want her to be Ayden Jane, awesome little kid.  Not the PWS kid.  I think we have succeeded with that, at least for now.  She does not feel any limitations due to PWS.  In fact, I'd say she almost has the opposite problem.  She is convinced there is nothing she cannot do.  Ha!

It will definitely be a fun week! 

Tuesday, October 15, 2013


Yesterday the boys, C and C who hang with us after school a few days a week, went to the house a couple of doors down from us to play with 2 more boys, J and J.  (no this is not a math word problem)  The name of the game for the afternoon was kickball. 

So I began to realize as I watched it all unfold, that we have culturally deprived Ayden Jane.  She has legitimately not ever seen a baseball or kickball game.  She had no clue what bases were, what order you ran them in or even the point of the whole game for that matter!  Didn't slow her down.  She was placed on a team and told she was 'up.'  Kicking a moving ball is not her talent, that much we learned.  The boys were so patient telling her what to do but it was hilarious as they wanted to explain every inch of the game complete with the intricacies of playing a man down. 

So what happened?  First 'bat' she proceeded to dribble the ball like a soccer ball to first base!  Oh the neglect from her parents...  The boys were so great and patient with her.  In the end she sort of stopped the pitched ball and then kicked it and ran.  Whew.  First base.  Navigating the bases after that had it's own challenges.  When do you run?  More importantly, when do you stop?  It was hilarious.

I tried to help a few times but I was basically told I knew nothing of this complicated new game so just go away.  Okay, not really, she just wanted to hear it from the experts on the matter, J and J.  The boys were AWESOME with her.  They repeated and waited and never got frustrated.  I am not sure Ayden Jane is totally up for a kick ball tournament at this point, but it was fun to watch her communicate and learn from her friends. 

So glad my Ayden Jane is blessed with families that have raised great kids.

A Day (or 2) of Eating Like Ayden Jane

Well, apparently I had comments waiting to be moderated.  Who knew?  Mostly they were questions from a few posts back what Ayden Jane eats these days.  Well here goes.

Breakfast:  We learned early on not to mess too much with breakfast...  Every morning starts with ketochocolate.  These are home made and are basically coconut oil, a bit of butter and cocoa powder sweetened with stevia.  Ayden Jane checks in with me in the morning to be sure it is time to get up and then heads to the freezer.  This keeps her happy for a while so I can wake up!  Once it is time for me to make breakfast it always starts with 1/2 an avocado with a bit of honey and cinnamon.  I know it sounds gross, but Ayden Jane takes all her carnitine, iron and even prebiotic mixed in there and never complains.  She also eats a slice of cheese, 'spoons' of pnut butter, almond butter and coconut oil.  Yep, right off the spoon.  She gets to pick a fruit which varies according to what I have on hand.  She also takes pharmaNac so that's her drink and sometimes she also has added water or almond milk.  Lastly, 1 scrambled egg.  I know it's a LOT, but this kid is averaging 1600 calories a day!  (or she was last summer when really active)  In the end, if you look at it there are lots of sources of good fat in the coconut oils, almond butter and avocado.  Some protein sources from egg and cheese and carbs in her fruit.

She has lunch at school... Today I packed egg salad, coconut bar (a keto recipe), a keto candy, celery with ranch and almond milk.   Generally the same format every day:  chicken salad, egg salad, hard boiled egg ect; almond milk, keto candy, fruit or veggie and often coconut.

Late afternoon snack at school (they eat lunch at 10:45) is pretty much always almonds, walnuts, a few chocolate chips and blueberries.

Afterschool snack today was 'spoons' and coconut bar.  She has these a lot because the spoons are fast and she and can take the bar with her and head off to play with the boys.  Oh, and today she also had a clementine with the boys.   

Supper she had grilled chicken and grilled onions and peppers.  (she eats the least at supper) Generally I try to have her eat whatever we all eat minus the grains.  So, hamburger bunless, taco shelless, meat and veggies without the rolls or potatoes... you get the picture.

Each day she gets a bit of unsweetened applesauce to get the second dose of carnitine in.

I have found the keto recipes to be awesome.  They taste really good (I was surprised) and if I use them as the base for the meal, then I can adapt the rest to everybody.  Example is if I make keto pancakes the others can use syrup and Ayden Jane gets an alternative.  Having thing like the coconut bars and keto chocolate make it easy to hand her good fats.

So, no grains, no sugars, just good nutrition packed food and remembering fat is her friend.

Friday, October 11, 2013

Sometimes a Very Odd Life

Contradictions is not really just the right word but it is all I can come up with.  Yesterday was a perfect example of how parenting a medically complicated or special needs child can have such contradictions going on in the same day.

I spent the morning at the lab getting blood drawn.  There were some mix ups so I had to recall what labs and why and fill in the pieces.  Ayden Jane?  Well they were fasting labs so she sat and waited while quite hungry.  She was pale but being such a trooper as always.  After that there were conversations with Dr. Miller and a friend about concerns of lab work and high ketone levels and what does it all mean.  What long term concerns should I have if any.  What does the realization of just how easy Ayden Jane goes into ketosis with a meter reading of 3.9 mean?  How do I keep her safe?  Lots of email and few texts and a several labs to discuss.  It was stressful and the stakes were high and it all seemed so very urgent and overwhelming.

Then evening rolled around and Ayden Jane had a soccer game with her friends.  She is, after all, just a Kindergarten kid.  We followed it all up with a trip to Chik fil A for school spirit night and homework all such 'normal' kid stuff.  She was silly and fun and did a great job reading her book before bed.

So, a day of huge, urgent, overwhelming, ground breaking things right along side adorable, typical, relaxed, fun stuff.  It is sometimes a very odd life.

Wednesday, October 9, 2013

Be Safe

Lot's of people contact me and ask questions about how I handle things like school and diet and family and parenting and doctors and ST, OT, PT, sensory integration....  I love that.  Really, I do!  Please always feel free to ask!  I just want to be sure that everyone knows who is answering.  I am a special education teacher who has taken a 6 year course in Ayden Jane.  Along the way I have learned so many things regarding early intervention, special needs parenting, food, endocrinology, immunology, supplements, genetics, PT, ST, OT... the list goes on.  I do, however, know all of these things as they apply to Ayden Jane...
In regards to food we have found what works very, very well for Ayden Jane.  I do think there are parts of what we do with Ayden Jane's diet that apply fairly well across the board.  I think for young children it is good to not fear the fat.  Their brains need it to grow.  I think that choosing foods that are nutrient dense is a good idea.
Ayden Jane's body has proven to us that grains just do not work for her.  I would go so far as to say that a lot of grains are not necessary for most kids, but I don't know that all kids need to go to the zero grain point.  Sugar?  Well, lets be honest, no one needs sugar. 
As for how to feed your very own child with Prader Willi Syndrome?  That's between you and your medical professionals.  It is a balance.  As the parent you have to make decisions about food many times a day.  I honestly, did not have professional help with Ayden Jane.  I just didn't have access.  I did the best I could and most importantly, things that I heard/read about from other parents I ran by my pediatrician.  He did/does not claim to know PWS, but he was fine with his role of making sure I was not doing anything that could harm her.  He often thought I was a bit crazy and did not expect things to help (like b12) but was good with monitoring her and making sure she was safe.
Whether you have a PWS knowledgeable folks guiding you child's care or whether you are a bit on your own, find someone to walk the journey with you who can keep your child safe.  It's okay if they think your crazy:)
I borrowed this picture from Vanderbilt Kennedy Center's Facebook page.  I think it's a great reminder that we are all in this together and if your Mommy gut says something is a good idea, run it by a professional so you can try it safely.
(and seriously, feel free to ask me or other parents questions, just remember we are, well, parents)
We all want to do what is best for our children but it is easy to get drawn into something we do not fully understand. Be sure to consult with your child's doctor before making changes in diet. It is very important to have someone who knows what to look for monitor and support you and your child on your journey to health.

Tuesday, October 8, 2013

MCT oil

A few parents of kids with PWS have researched, checked with their doctors or dieticians and decided to try MCT oil for their kiddos.  We gave it a go as well, starting at a very low dose for her size ect.  I wanted to give it a fair shot and not just a day or two so we slowly worked our way up until we were at 1 tsp per day. 

What did I decide?  Not good for Ayden Jane.  I don't understand exactly how it is supposed to work internally but I know that it is derived from coconut oil.  I figured if Ayden Jane does great on coconut oil then she should do super on MCT.  Also, I had heard a few other parents have great success with it.  I found that Ayden Jane has significantly less energy and stamina on MCT.  I tested it a few nights with our 5k training.  She was able to run and walk much less.

I also found her to have less focus and be oppositional.  I mean more oppositional that usual :)  She had homework to do and it was an all out war.  It has never even been a small battle before.

She was tired and slept more.  She was hungry.  She typically is not hungry.  I know that sounds strange to say of a kiddo with PWS, but she would rather play most of the time.  She gained a bit of weight on the MCT. 

Any good stuff? Yes.  I think her conversations were deeper.  I know she was able to memorize longer songs.  There is something to it, but Ayden Jane cannot handle it. 

Tuesday, October 1, 2013

Birthday Reflections

Ayden Jane is 6 today.  It is always cause for celebration when a birthday rolls around and as parents we are always a little sad that another year of childhood is behind them/us.

I look at pictures of each of my kids on their birthdays and I remember such fond memories of their happy little faces and all the joy they bring.  I love to remember them if even just for a few minutes just as they were when they were 'little'. 

It surprises me each year when Ayden Jane's birthday rolls around.  The emotions that come with the pictures are ... well..... complicated.  All the same joys are there and I know that her life has been filled with joys.  I wonder though, when the emotions of fear, anger, sorrow... will fade.  I suppose they will never fade completely, like wounds that heal and leave scars.  Over the years the scars continue to fade, but they never go away completely.