Great Conversations - Part 2

I have so much to say, but I think I will just post Ayden Jane's questions along with Dr. Miller's answers for tonight.

AJ: How do you know how much your body needs in a day to be healthy? and how do you decide how much of each kind of food?

Answer: Based on how tall ou are, how fast you are growing, and how much you weigh (compared to how much we want you to weigh), doctors decided how many calories you need in a day to keep you healthy.  For you, personally, it should be about 9 calories/cm of height/day.

PLEASE: notice that things like numbers of calories are specific to each person so if you are unsure find a doctor to help you calculate what your unique body requires.

AJ: Why can my body not use some sugars - like bread and cookies but it can use other sugars - like fruit? How do you know?

Answer: The difference is in the type of sugar found in these things - fruits have fiber in them, that allows the sugar to be digested more slowly in you rbody, so the sugar can be used for energy vs. turned into fat. If you eat what is called "simple sugars" which are grains, cookies, potatoes, pasta, they do not have fiber and so get digested quickly, which causes your insulin to increase a lot and that turns all of the calories directly into fat and also causes your blood sugar to fall lower and the fall in blood sugar will make you more hungry.

AJ: What is bad about fake sugars if they do not make me feel bad?

Answer: Fake sugars do exactly what simple sugars do to your digestion - they cause a huge release of insulin and insulin causes all calories to turn into fat and also causes your blood sugar to drop.

AJ: How many grams of sugar is too many? per day? per meal/snack?

Answer: It depends on the person, but in general, I like to keep the amount of sugar at <30 day.="" grams="" p="" per="">
AJ: Why does my belly tall me I'm hungry sometimes even when I know I already ate?

Answer: Unfortunately that is part of Prader-Willi syndrome, but it can happen to all of us. It tends to happen when we are sick with a cold, when we are tired, and if we eat too much sugar or fake sugar. The only way to fix it is to eat a small amount of protein (a bit of cheese, a few nuts) to settle your stomach and then that feeling will go away.

AJ: Are you close to having the medicine to fix my Krebs cycle?

Answer: Yes - the study for the medication that should help it will hopefully start in December.

Great Conversations - Part 1

It was such a great trip to see Dr. Miller.  We made some new friends who were also there that day and had all our questions answered.  What more can you ask for?

On the way down, Ayden Jane was thrilled to find out that she was going to get typed up answers to her questions.  She thought it was so funny that she had given Dr. Miller homework! During our appointment we received a copy of the answers to refer back to which was great! Especially since Ayden Jane tends to alter what she heard over time to suit what she wants....

The most awesome conversation Dr. Miller had with her though was when Dr. M drew her a diagram on the exam table paper. She walked her through how food enters the mouth, travels down the esophagus and into the stomach where it is digested.

Here is a paraphrased version as I didn't hear it all, so I am relying on Ayden Jane to explain it. 

They talked about how the stomach digests simple sugars very quickly and they are then rushed into the intestines. When they hit the intestines fast in a bunch the intestines tell the pancreas to send out lots of insulin. She explained that the insulin then roams around in the body and sucks all the energy it can and stores it away into fat. (AJ already knows that her body can't use the sugar for energy since it won't enter the Krebs cycle - that was last summer's lesson)

So, after the insulin has been high and sucked up all her energy and dropped her blood sugar down to low, she feels yucky and her belly/brain starts to say it is hungry. (just like it would for us, just magnify it)

So, in the end, the goal is to eat in such a way that the insulin does not spike so rapidly or high. If there is not too much insulin the body won't store energy in the fat (make her gain unnecessary wt) and she will not feel hungry. In fact, the body is incapable of gaining weight without insulin ... Makes me think twice about what I'm eating too!

So why are fruit sugars okay, or at least better, than simple sugars like in bread, pasta, cookies... ? Because the fruit has fiber which slows down it's digestion so the sugar is released slowly. That means the insulin does not burst out either so there isn't too much insulin floating around to cause the problems. 

After the appointment when we were chatting over lunch, Ayden Jane summed up her time with Dr. Miller: I like that Dr. Miller talks to me like a big kid. She makes it easy to understand how all the big words I know fit together and explain what's going on inside me. 

Apparently, all this time AJ has been listening and learning and just frustrated that she only had the pieces to the puzzle but couldn't figure out how they all went together.

Time to Step it Up.

Wow.  It's November. I was not good with posting in October but it is time to get back to it.

Ayden Jane is cruising along. She is staying healthy (more on that coming soon) and is just easy these days. She has so much 'verbal energy' there are times my ears hurt. It is all good though because she is talking about all sorts of things and is not arguing or 'stuck' or just questioning for the sake of questioning.  It is a very typical kiddo spouting off every thought that comes into her head.

Most entertaining is first thing in the morning.  Mckenna is my least talkative child and the polar opposite of a morning person. Let's just say that Mckenna does not appreciate Ayden Jane's zest for mornings...

Lots of things are coming up around here.  Ayden Jane and I will head to Florida to see Dr. Miller next Monday.  AJ is very excited and has a list of questions prepared for Dr M.

1. How do you know how much your body needs in a day to be healthy? (I have introduced the words metabolism and calorie) and how do you decide how much of each kind of food?

2. Why can my body not use some sugars - like bread and cookies but it can use other sugars - like fruit? How do you know?

3. What is bad about fake sugars if they do not make me feel bad?

4. How many grams of sugar is too many?  per day? per meal/snack?

5. Why does my belly tell me I'm hungry sometimes even when I know I already ate?

6. Are you close to having the medicine to fix my Krebs Cycle?

It should be fascinating to hear the answers. What is most amazing is that Ayden Jane really wants to know and Dr. Miller is so great at explaining really complex things to her in a way that she totally grasps them.

Busy - Life's Theme

This fall is racing by. Ayden Jane is doing great in school and she is participating in several after school activities.  She is one happy, busy little first grader.

Mondays she has school, of course, and then swim team for an hour. It is a great little group of kids and the coach does about 15 - 20 minutes of a 'land' work out with the kids first and then they swim for about 45 minutes. Ayden Jane is the youngest and she is doing great.

Tuesdays she still has hippotherapy (therapeutic horse back riding). She has been going to the barn since she was 18 months old. She works hard on the horse doing lots of strengthening exercises and really loves when she gets to jog.

Wednesday she has soccer practice for her little rec soccer team. She does her best and is improving. She has a long way to go before you could call her a soccer player, but she runs around and has fun so it's all good.

Thursday she has her other day of swim team.

Add in there a couple of dog walks or bike rides or trampoline time or playgrounds or beach time and we manage to keep her pretty active.  She is of the mindset that the busier the better so off we go.

Instilling the idea of daily exercise has been a great benefit to Ayden Jane. Since she is a routine kid she does not feel that any day is complete unless she has had some exercise! What I notice is that daily exercise keeps her energy level high and her brain sharp.

I know, it's just like so many other things for her dealing with PWS. It is actually true for all of us that we would feel better, think better, sleep better and be happier if we committed to daily exercise.  It's just that our typical bodies can cheat on that and still get by.... No pass for Ayden Jane, but she doesn't mind. She thinks it's wonderful that we take long walks together or bike rides or that we  'have' to get exercise. She uses this need to get time with me, her Dad or her siblings - but of course we don't mind.

Parent/Teacher Conference

The first quarter of first grade is coming to a close. Not sure how that is possible, but it does bring on time for parent/teacher conferences. I was a little nervous for Ayden Jane's; not sure why. Just as background, yes, Ayden Jane does have an IEP, but it is solely for the purpose of receiving OT. She does not have any other support and is a typical kiddo in first grade with a few quirks that deals with a lot of medical crap with style.

The numbers stacked up like this. Her standardized testing which is a 'MAP" score done on computer placed her as average and low average with percentiles in the 40's. Of course I would rather not see 'low average' written on things, but since the word average is on there I am good with it!! Yep, not one area was labeled low or below average.  Woot!

Next up was the running record. AJ"s school uses the Fountas and Pinnell running records for reading as a way to track reading level. Ayden Jane finished last spring as a level C. She is now sitting at a level E. I'll take it!

Teacher feels that Ayden Jane 'gets' the math they are doing. She just is sure to position herself next to AJ during teacher directed activities because AJ will decide she knows what she is doing and try to work ahead. The problem comes in when Ayden Jane takes off and is wrong she is one tough kid to reel back in!

Her teacher is concerned about the quality of Ayden Jane's handwriting because she feels the second grade teachers will not accept it and will melt AJ down over it. I told her that I am not too worried about that because she is writing letters now quickly and the quality of her sentences is excellent. She is able to come up with good, grammatically correct sentences. She can spell phonetically and come quite close to the correct spellings. She is spacing between the words all the way through the sentence and it is all a fairly smooth process. I asked her to just keep doing what she is doing because I see huge improvements. I just really think that if we can keep the ability to put thoughts on paper flowing, we can clean up the quality of the handwriting in time.

Mrs. C says that Ayden Jane is always happy, never a behavior problem, works hard and listens intently. Nope, can't ask for any more than that.

The only other thing of note she added is that when she works one on one with Ayden Jane, that is when she sees just how much Ayden Jane is picking up in school and how smart she is. I just love that Mrs. C sees the smart little brain in there even when her ability to express what she knows is compromised.  

Let it GO

No. That is not a reference to Frozen. As Ayden Jane turned seven this week we had so much to celebrate and be thankful for. We did that! There are so many ways that Ayden Jane is blowing PWS out of the water and making it seem like just some little thing she deals with. Yep, kicked some butt at swim team, reading like a champ, can trade wits with a teenager, manages to be thoroughly happy without sugar in her diet, fearless in her approach to life... I could go on.

Just when you start to be excited about these things, PWS manages to sneak up on you. Well, it snuck up on me, not so much Ayden Jane. Saturday as I watched her soccer game, PWS just glared at me. Her team played a team of girls all her age that train together and are prepping for club soccer. They are sweat kids, good friends and several are in her school. They are the group of girls that would likely be Ayden Jane's good friends ... IF she had all her of chromosome 15 intact.

Instead, Ayden Jane wandered around a bit lost. Honestly, she was super tired from the awesome birthday week. It was her first game so she was still 'taking it all in' as she does during the first of most anything. She was more concerned about drinking and going to the bathroom than playing. She was obviously not in sinc with the rest of her team, or with anyone else for that matter.

Now I need to take a lesson from Ayden Jane. She was happy. She was not worried about much of anything, she was just enjoying a pretty day on a soccer field and doing what she could do and not worrying about she couldn't. I don't know why I let it bother me when she lags behind upon occasion because it doesn't bother her. Generally, she kicks it into gear in her own time and it all comes together.

Somehow, I need to figure out how let go of the things that she is just not going to be great at, even if she wants to be and be thankful for the things she does do well and the incredible can do spirit she has. I guess that sounds pretty obvious and like it shouldn't be too hard. It's just that it sneaks up on me. I get angry that her body is uncooperative and takes away the ability to simply run and play with ease. I begin to go down that dangerous path in my head of thinking about what she would be like if she had all of her DNA. I begin to allow bitterness for what she cannot do and the struggles she faces creep in when I should focus on how awesome she is and all the things she CAN do.

Seven!

Ayden Jane was properly spoiled for her birthday. Last weekend, the prebirthday activities began with Kayla and Allie coming in from Clemson. They rode bikes to the beach, swam at the pool and played whatever Ayden Jane wanted for the entire day on Saturday. (which actually started more like Friday night) Ayden Jane is one lucky little 7 year old. They even showered her with presents!

Next up was the actual birthday. She asked to take chocolate dipped strawberries as a treat for her friends. It worked out great! Some of the kids looked at them like they were foreign objects from some crazy planet, but in the end almost everyone loved them. A few even said it was cool that they were on Ayden Jane's 'magic diet'.  (see the book Gordy and the Magic Diet) After school she had soccer practice and then Grandma came to visit and brought presents. Yay! She loved it.

For the grand finally, we took Ayden Jane to ride her first roller coaster. To say that she loved it is quite the understatement! She loved all things fast, high and spinning. The more wild, crazy and dangerous, the bigger the smile and greater the joy.

Sorry the pictures are not the greatest, but lighting and the speed at which they were going were a challenge.