Fake Sugar

Okay, so it's confession time. Although I have done a good job keeping artificial sweeteners - fake sugars as Ayden Jane calls them - out of AJ's food, I have failed as it comes to drinks. I have known that they are not good for AJ but have rationalized my way through because she absolutely will not drink water.

Dr. M sent me an article the other day about fake sugar and the negative effects both short term and particularly long term.  She asked me to read through it with Ayden Jane as the answer to all AJ's questions about fake sugar. Then let AJ know she wants Ayden Jane off them completely!  Yikes!! And by off them she means all of them. No rationalizing that this one is better than that one...

So, I talked through all of it with Ayden Jane. You see that means no more diet green tea at home. No more vitamin waters, no more life waters.... Dr M suggested something called Hint waters. They are EXPENSIVE but are sweetener free.  As to what they are slightly (thus hint) flavored with I have no idea what but are not sweet at all. There is no sweetness to the taste but there is a mild taste.  I don't get it...  Luckily, I found 2 flavors at a store up the road and Ayden Jane gave them the thumbs up.  Whew.

Now Ayden Jane was ready to make a deal with Dr. M. No more fake sugars at home but when we go out to eat she can have the usual...  It was a nice try, but Dr. M gave her a counter offer. She could have fake sugars once in a "great while" when we go out.  Of course, "great while" had to be defined for little miss AJ. The answer brought tears... twice a month at most. Ayden Jane and I talked and negotiated and we compromised on once a week. I figure that is a huge win for me in that it really will add up to a big reduction. Dr. M told her she was proud of her for doing her best.

That's when Ayden Jane really got to me. AJ's response to Dr. M: I love you and I will do my best. I know you are just keeping me safe and healthy. I told Dr. M, I wish I could have gotten a picture of the expression on Ayden Jane's face as she said that. Just picture sad-heavyburdened-determinedtomakeyouproud-feelingloved. 

Pirate Voyage

I went on the first grade field trip today with Ayden Jane.  Her teacher asked if I could go because it was a dinner theatre sort of thing. Just imagine pirate acrobats, sea lions, Christmas story....  And lots more combined. The kids loved it

I was there basically to manage Ayden Jane food wise. The menu was pirate fare, all things eaten with fingers:cheese biscuit, potato wedge, chicken leg, corn on the cob and a cookie. They served the kids either coke or water to drink. Obviously AJ had water.

We knew the menu ahead of time so Ayden Jane had asked if I could bring her a couple things to replace what she couldn't eat. We are working on independence so it asked her what she thought. She decided I should bring a cheese stick and a square of dark chocolate.  She said she thought she could have the chicken and corn on the cob and cheese stick for supper and eat the dark chocolate when everybody had a cookie.  I thought it was a great plan and Ayden Jane did great.

The potato wedge was actually a half a seasoned baked potato.  Ayden Jane asked me about it and I told her that potatoes are a lot of carbs. She asked if it would shoot up her insulin and make her feel bad and not enjoy the show. I told her I didn't think it would cause too much insulin but that she really hasn't eaten potatoes before. She decided she would like just a piece of it to be safe and she thought she'd be okay because she wasn't even eating any fruit.  I told her that was great thinking and she did great!

I love watching her learn to navigate these sorts of things so well and set herself up to feel good and have a great time.

Return to School

I will back up and post some video of roller skating and other fun stuff we did over break but since my computer is in the shop and I'm not good at doing all that from the iPad I will move on to the return to school.

Ayden Jane has been getting frustrated with a program called accelerated reader. In this program the kids read books and then take tests to earn points. Her school does a great job with rewards and Ayden Jane wants in on those points!

She has done okay ona couple books but is struggling a little. My guess is that she is in a hurry to get points and does not read the questions carefully...  Then she gets so upset when she doesn't get enough answers correct.

She told me about it a few weeks ago but I did not communicate how frustrated she is with it to her teacher like I should have. So yesterday when she came out of the building she burst into tears. We talked through it and decided to go chat with her resource teacher. Her classroom teacher, mrs. C, would totally help too but since AJ has an iep but has yet to ever need support I thought I'd see if she wanted to tackle this one. Honestly I think AJ just needs to slow down and do a few well to get the hang of it. Then she should be fine.

In the meantime she will go at the end of the day to mrs. R's room and reread the book with her or the assistant and then they will listen to her take the computer test. Basically, make AJ read it out loud so she will slow down.  The cool thing is mrs. R has not started the program with her kids so Ayden Jane is going to "teach" her all about it.

This is all a perfect example of why Ayden Jane is doing so well. She is absolutely determined to keep up with the other kids in her class. It does not matter to AJ how hard it is sometimes she will find a way to achieve the same things!  Sure it's sad to see her cry, but I can't help but be amazed as the tears are never combined with thoughts of giving up. Just an expression of needing help to form a new plan. 

Thanksgiving

Today is Thanksgiving. Our little family has much to be thankful for. Our joys far outweigh our struggles. My house is full with happy, healthy, active kids with bright futures. Gary has the day off and we are prepping for a full day of thanksgiving and family fun!

I get a lot of questions about Thanksgiving and Prader-Willi syndrome. For some families Thanksgiving is rough because it is filled with stress. I know. Strange statement but it is true for many kiddos with PWS that stress and excitement tend to come hand in hand. Excited about the big meal but already thinking, plotting about what they will get to eat and hoping for extra treats....  Wondering how much of this or when or if the days schedule will be messed up. Wondering if food will be unattended or if aunt Sally will remember to bring ________.  It's rough for those families.

It can be stressful on parents as well, especially if family members or guests are not on board with PWS. Will Uncle Fred slip treats to little Johnny even though he's been told not to. Will the herd of cousins leave uneaten food or drinks lying about. There are strategies for dealing with all of these issues but I am no expert on any of them.

One of the things we can add to our list of what we are thankful for is that Ayden Jane is not stressed at all by Thankgiving. She loves the "feast " and really loves that her entire family is all home. (We should have a few more years where that's the case).  She simply asked me if she can have some of everything she is allowed to eat. Of course the answer was yes and off she galloped to play.

We make a few adjustments, like this year Noah suggested we make her some chocolate covered strawberries to enjoy while the rest of the crew eats a super sugary, strawberry jello salad with pretzel crust thing.  She does get mashed potatoes with lots of butter and thinks she is a queen!  How could we not give her grandmas famous mashed potatoes though... She enjoys the green bean casserole, lots of turkey (usually wants the whole leg all to herself) and any other vegetables.  Sometimes I bake her some apples and walnuts with honey and cinnamon but didn't pull that one off this year.  She is unconcerned about skipping rolls or stuffing or her brothers baked Mac n cheese.  Things I could do for her that may come in handy down the road are make Parmesan crisps or other carb free crackers or even cloud bread.

Honestly, Ayden Jane just makes it easy because she is so thrilled by the little gestures. Noah's thoughtfulness of the chocolate strawberries has already made her Thanksgivivng. So, I will keep other families for whom holidays such as this are challenging to navigate in my thoughts and prayers and thoroughly appreciate the gift of yet another relaxed, joyful Thanksgiving. 

Updates

So some follow up/adjustments on the questions and answers from Dr. Miller and an update on the less is more approach.

First of all the calorie calculation. I did the math and by the formula Dr. Miller gave us Ayden Jane needs 1200 calories a day. Honestly, the couple times I have checked her calorie intake (maybe once a year?) she runs more in the 1600 + category.  So significantly over 1200. Secondly, the answer to Ayden Jane's question of number of carbs per day surprised me a bit. Dr. Miller's recommendation for Ayden Jane (and this is one that varies by child) was for her to eat less than 30 grams of carb per day.

So yep.  I had some things to think about. Ayden Jane being Ayden Jane wanted to count up the carbs in her day. She was getting at least double that many!  Mostly because she was eating grapes and oranges and other more carb heavy fruits with nearly every meal and snack.  I also use a bit too much honey to sweeten some things.

I tossed the question back to Dr. M as to whether I needed to cut calories. Also told her that by our count Ayden Jane was eating double the carbs...  She replied that Ayden Jane looks good. She said to NOT cut calories because AJ burns them like crazy and needs those extra calories. As for the carbs, that is where we should make adjustments. Not that we have to because things are going fine but that if I want a lean, mean, AJ machine trimming off those extra carbs would make it happen.

So, back to Ayden Jane. After reviewing our carb counts she asked me, "mom, so what are we going to do about this carb situation?"  We decided that since she can now (finally) swallow capsules that her carnitine fumarate capsule will go down that way and we will be able to cut some honey. Next up we decided that we will replace some of the servings of the higher carb fruits with berries.


We are now about a week into less is more lunch and a few less carbs. At this rate she may just lean out over the holidays!  I must admit I forget she is just a little first grader sometimes. She is working so hard to be the healthiest, smartest, happiest kid around. So far she has not let PWS slow her down. 

Less is More

Ayden Jane has amazed me once again.  The other day, she asked to pack her own lunch. You would think that she would pack a FULL lunch but on the contrary. It was a light lunch. In fact, we asked her if it was enough and offered ideas for more to pack in it. The answer was fascinating: I always eat everything you pack but when you pack too much I feel yucky by snack time. Like my sugar is low. 

Now, we have been fighting this dropping sugar thing for a while and I have talked through it with Dr. M, tried adding extra fats or extra proteins...  With no other ideas left and still feeling like something wasn't quite right, I just sort of decided that the early snack would have to get her through and I would just have to hope she out grew whatever was going on.

So I tried Ayden Jane's less is more technique with her lunch. I am happy to report that after 4 days of the new improved 'less' lunch Ayden Jane comes home from school less hungry and with more energy.  Yep, you read that right. I asked Dr. M if it is possible for her to simply be over producing insulin in response to a bit too much food after a relatively long time without food. (4 1/2 hours). That's what we think was happening! Then, since she is not starting the roller coaster of high insulin, low insulin... she feels better, has more energy, and is less hungry.

I'm glad one of us was smart enough to figure it out. Today she was checking up on me. As I handed her lunch to her on the way out the door she stopped and said, "Just 3 things right Mom? Not too much?"

She has been a happy bundle of energy this week. On the second day of the less is more trial she came home and didn't even make it inside before she was playing with the dogs and having a blast. No snack at all. So much energy I pawned her off on Gary and they took the dogs on an adventure.

So cool that this kid is starting to be able to read the signals her body is giving her.

FPWR conference - Hope

I returned from the trip to see Dr. Miller to turn around a few days later and head to the Foundation for Prader-Willi Research (FPWR) conference in New York. I missed the last one in San Antonio and had really wanted to get to this one but it seemed unlikely.  A few last minute things fell together and I was off! All I had to do was drive to Richmond and stow away in Ali's car.

I will cover some of the research stuff tomorrow, but for today I want to explain a bit of the other stuff you take away from a conference like this. You see, on a daily basis I do not run into any one in Ayden Jane's schools or on her teams or at our church or .... who deals with PWS. We have lots of fabulous friends who are supportive, have taken the time to learn, love Ayden Jane, take the extra time it takes to chat with her sometimes, and even don't walk away when I need to talk about it.  lol

When you get to the conference ALL the people there live daily with a child or grandchild with PWS. No explanations need to be given - about anything. Our kids are not the same, our journeys are not the same, our challenges are not all the same, our approaches are not even all the same but we are all working toward the same goal. We want to celebrate all our kids CAN do and work to find answers to many of the common challenges of energy balance, chronic hunger, speech delays, anxiety, social skill deficits ... 

So we, parents on a mission, learn all we can and listen to long scientific presentations that make us wish we had paid more attention in science class. We rally around hope. We find ways to use our talents to support the research. We rally around hope. We celebrate the research and fundraising accomplishments of the past year. We rally around hope. We cheer the accomplishments of each others children. We rally around hope. We learn from those ahead of us on the journey and support those behind us. We rally around hope.

There is so much more, like how much fun it is to play and squeeze all the little ones but the most amazing part is that the hope we have been rallying around for the past 7 years of our journey is turning into reality. The amazing technical research is making it to the point where treatments are developed and being tried. Sure, there are lots more hurdles and so very much more we don't know and need to do, but the forward progress is astounding.

There is no way to properly say thank you to the brilliant folks and talented people that are so instrumental in this fight. Can't wait for Austin next fall!