Wednesday, August 27, 2014

First Grade So Far

Whew.  Never a dull moment.  So the first 3 days of school went fabulous!  Ayden Jane took her basketball and played all recess long with her new friend. (and I doubted her) She had 3 great days and her teacher seems to be an excellent match.

I picked her up a bit early on Friday to go get molds made for her new orthotics and chatted for a moment with Mrs. C. Two things I loved! First of all she said right up front, "you were right about her handwriting it is awful!" Now some people might get offended if a teacher told them their child's handwriting is awful, but what it said to me is that she is willing to be up front with Ayden Jane's weaknesses. I was very happy not to get the platitudes of all is peachy keen and all that when it's not. Secondly, she also said that even in the first 3 days Ayden Jane has made it clear that she has it all going on inside that little head of hers. So what more could I ask for than a teacher that will meet her challenges head on and already sees that just because she can't always get it out doesn't mean it isn't all in there.

So, you imagine my surprise when I got a call from the nurse at noon on the following Monday. Ayden Jane was complaining of a headache but had no fever or other symptoms.  I picked her up and she came come and took a nap.  She was not too full of energy that evening but did not seem like she was 'sick.' I sent her Tuesday morning and I got a call about 12:30.  Same deal.  Headache and then she started to say her tummy hurt.  Hmmmm.  Nurse said there is a stomach bug going around with a fever and nausea/vomiting. AJ came home and promptly took a nearly 3 hour nap!  When she woke up she look great and was full of energy. We went to horses and then she kicked a soccer ball with me at Mckenna's practice.

I sent her off to school this morning and I am hoping for no phone calls!  We shall see!

I can add that she has had homework each night this week. Some things were a struggle, but not because she doesn't understand the work, because she is sure she knows more than mom! Actually, the first night was a bit rough but by last night she had it down and it took her just a few minutes to complete.  Little by little we will get there.

Thursday, August 21, 2014

First Grade

This was at the end of Ayden Jane's first day of first grade.  She summed up the day saying that it was awesome, her teacher is REALLY nice and she is sure she will be able to learn everything she is supposed to in first grade.  I'd say that's a success!

I brought her scooters and we rode them home together.  Possibly not my best choice with a heat advisory in effect, but we made it.  She did fall asleep on the sofa after a snack and a drink, but I was not surprised.

She could tell me a good bit about her day and knew just what she was supposed to do for 'homework' (bringing in items to help describe her talent, a favorite and what is special about our family)

Today was day two and it seemed to go just as well.  She did ask if she can take a basketball to school tomorrow.  Ha!  The kid has never played basketball in her life!  Apparently, a new friend wants to play basketball with her so she is all in.  I'm not sure it's going to work out as AJ plans, but there is no telling her no!  I hope it doesn't cause a melt down on day 3 but I'm not going to start telling her not to try things now!  She seems to pull off anything she puts her mind to so I will send her with ball in hand and hope for the best!

Just one of my Marlin moments:)  You know, from Nemo - "You think you can do these things AJ but you can't"  I love how she keeps proving my inner Marlin wrong.

Sunday, August 17, 2014

Getting Ready for First Grade!

I thought I'd post the notes I am using to chat with Ayden Jane's teacher before school starts later this week.  On any given day, Ayden Jane is as typical as the next first grader.  However, there are quirks the teacher needs to be aware of and extra things to keep AJ safe.

I always stick with a one page summary and use as few words as possible.  Lets face it, if it is too long the teacher may read it once, but it will not be useful for keeping around and referring to quickly.  I will meet with the regular ed and special ed teacher together even though Ayden Jane does not actually go to the resource room for services.

Prader-Willi Syndrome (PWS)
Approximately 1:15,000
Diagnosed by genetic testing showing deletion or duplication on the 15th chromosome

There is a very long list of challenges associated with PWS and for a full picture of the disorder you can visit and 

Medical concerns for Ayden Jane:

Dietary concerns:
Grain free sugar free diet (no crackers, pretzels, pasta, cookies, juice…)
Ketogenic – her body and brain use fats best for energy
Similar to diabetes, maintaining blood sugars evenly is important
Low metabolism – truly requires less calorie intake than a typical child
Does not feel ‘full’ and will continue to eat if offered – no off switch
Could become hyperphagiac
Extra focused on meals/snacks

Immune issues: 
Does not ‘catch’ viral illness easier but struggles to recover
May have odd skin reactions
Cannot fight bacterial infections – strep throat, sinus, pneumonia…
Please let me know of illnesses that ‘go around’

Odd and ends:
Diminished pain – Let me know if she complains for more than a few min.
Temperature regulation – Can over heat easily, even in winter with coat.
Strabismus – glasses

Sees OT for writing – it is awful ….
Takes in way more than she can express
Started preschool WAY behind her peers and has been slowly gaining since.  Pretty squarely average currently with the exception of handwriting.

Ridiculously hard working and independent – approaches everything with an uncanny optimism and confidence

Monday, August 11, 2014

Out of the Shadows

If you have read much at all of Ayden Jane's adventures than you know she is doing great.  My head knows this.  In my head I know that she has beaten so many odds and that even when she was thrown off track when she got ill, we were able to get her back on track... each time.  My head knows that she is right where she should be academically.  My head knows she gets along with other kids and makes friends.  My head knows that she is disciplined and determined and willing to take on the challenges of navigating food.  My head knows she is smart and funny and sees the world in an amazing, creative way.  My head knows that she has reduced her scoliosis curve and the 'chances' of it returning are small.  My head knows that she is confident and happy.

I think you get the picture.

The problem comes in the heart.  I know she is right where she should be academically, but what will happen in 1st grade?  I know that she is managing really well with food but when will hyperphasia make her hungry constantly.  My heart worries that the ways in which she is different will cause her to be ostracized.  My heart panics a little each time I look at her and think I see her alignment slightly off or her weight climbing.  My heart is scared that the next illness will be the one we can't recover from.  Basically, my heart worries about so many things that I just took for granted with my other kids.  It just casts a long shadow that I pretty much just get used to...

Not to say that there isn't plenty of joy and awe and even a bit of pride in my heart as I watch her.

Just that there is a constant struggle of head vs heart.  All the great things in I know in my head are often a bit shadowed by the concerns of the heart.  There are days where the things in my head are so clear and bright it is like sunshine.  I love those days. Then there are days where the fears in my heart just well up and the shadows return.  The fears and what if's begin to creep in.  I think the constant fight to stay one step ahead of the next problem, to look at the outside and try to 'see' what's going on inside, to live a 'normal' life when things are in fact, not 'normal' just take a toll.

As I get ready to send Ayden Jane off to first grade in about a week, I am excited that she is doing so great.  But those shadows.  They keep following me and casting doubts.  Funny things about shadows, they dull the brilliance of light and make you see things that are not really there.

The best I know to do is to use my head and ask God to take charge of my heart.  Only He can calm the fears and doubts and give me the patience and strength required to fight the daily, exhausting battle of raising such an amazing, complicated little miracle.  (Of course, that actually applies to raising all kiddo's)

Saturday, August 9, 2014

Questions on the Beach

It's been a busy week and with all the rain before that, we missed being on the beach.  We headed out today and Ayden Jane had a great time riding the waves.  It is so much fun to watch her have so much fun.

Typically, after she works hard playing in the waves she has a snack.  We usually pack some nuts and a drink and plop down on the boogie board and watch the ocean while she snacks.  Often this is a time when the deep questions (or hysterical comments like, "why are that guys shorts so stinkin' tight?") come.  Her body is calm and she is relaxed.

The question that started things off today was, "how do people get big bellies and does it make them feel bad?"  (the feel bad is in reference to health, not feelings)  Which led to: Is my belly big?  What do they do to make their belly big and how do they make it small again?  Why can some people like Noah eat so much and not get a big belly and other people can't eat very much?  It was the first time I included that people with PWS have to be careful because it is easy to get a big belly and extra hard for them to lose it.

I introduced her to two new words: metabolism and calorie.  She is so ready to understand the entire big picture of metabolism and food and sugars and managing it all ...

The best part is that Dr. Miller is going to take charge of explaining it all to her in November when we go to see her.  I do my best but Ayden Jane finds something I can't explain and then gets stuck on that.  I am ready for her to truly understand the big picture and start the process of managing her own food.  Her discipline is astounding and she truly has no problem cutting things out or limiting things if she understand why.

We will keep a 3 day diet log and send that on ahead so it can be analyzed and Dr. Miller can show her what is good and what needs to be improved ect.  I sure hope Dr. M doesn't have too busy a day because this kid's questions can go on forever and she really, really, really wants to understand it ALL.  It is challenging sometimes because she is 6 and wants to understand stuff that can be tough for an adult to fully comprehend.  (I might have to record it :)

Tuesday, August 5, 2014

Excited About Labs

Lab work is a part of life with a kid who's a bit medically complicated.  Since Ayden Jane's body does not do a good job of monitoring and adjusting to life or getting some nutrients out of the foods she eats it is how we know if all is well on the inside.  Generally speaking, I can tell if something is off on the inside by how well her brain and body are working.

We had labs done last week and got results today.  Everything looks fantastic!!!  You have no idea how rare a treat that is to be able to say.  I don't have the actual labs in hand, but Dr. C emailed a summary of the results to me.  Thyroid - good, carnitine - good, IGF 1 - a tad high but no drop in dose, cbc - normal, cholesterol - good, insulin - good ... the list goes on.

So how does this match the outside?  Ayden Jane has been great lately.  No hunger, no behavior issues, energy to spare, great sense of humor .... just a joy.  Today we spent 7 1/2 hours with friends at the water park.  She took a break for lunch and that was it!  She did more slides than I did and I was exhausted.  I wish I could have counted the number of stairs she climbed and she carried her own mats or tubes!  

If I can just keep this kiddo healthy and keep all bacterial infection out of her little system there will be no stopping her in first grade!!

Saturday, August 2, 2014

A Good Life

A week or so ago I posted about a conversation Ayden Jane was having with Dr. Miller about 'fake sugar' and drinking water ect.  Ayden Jane had made up her mind to drink a cup of water everyday after that.  No small feat as I have tried most everything to get her to willingly drink water!

After a few successful days, Ayden Jane wanted me to email Dr. Miller and tell her...  (not sure how Dr. Miller handles all the email)  Anyway in the process AJ asked her a few other questions and Dr. M told her she was going to have a conference call about a medicine that would help.  Naturally, AJ was thinking about something to fix her Krebs Cycle.

Dr. M explained that this is something different that would help her not crave the sugar she can't have or even fake sugars.  I had to explain what crave meant.  I told her that it means to want something really bad so that it was hard to have it around and not get some, sort of like bananas. Her response was pretty awesome and makes me really glad we have chosen to feed her the way we do.

Ayden Jane was actually sort of confused.  She said that the medicine didn't really make sense and wouldn't really be helpful for her.  She told me she just wants the fake sugars in drinks because she hates water but has to drink something and that she doesn't crave sugar in food.  That she just wants to be able to eat things without having to worry about accidentally eating something with too much sugar and then feeling awful.  I know this is a concern for her as she sometimes will choose not to eat something because she just isn't sure and has things she wants to do that day.  I'd say her biggest food anxiety is accidentally getting a sugar load so she likes to just stick with foods she knows make her feel good.

Now, I know that Ayden Jane is more sensitive to sugar/simple carbs than most with PWS.  I don't know if this is because she has eaten this way for so long or if she would be that way anyway and would have just adjusted to not feeling great.  (that's an awful thought)  What I do know is that Ayden Jane is 100% happy eating the foods she is allowed.  She is 2 months from being 7 and hyperphasia is not an issue.  There are no locks because she doesn't need them.  She is not bothered by food left on the counter and can walk past it without a thought.  She can hang out with her friends while they eat cookies or candy and be totally content with a coconut square or keto chocolate.  We can go out to eat and she is not concerned in the least with foods she does not eat.

Not to say she wouldn't eat more than what she needs of what she does eat.  She is not constantly hungry and does struggle if something comes up and she feels hungry but needs to wait. Her body is definitely not great at tapping into stored reserves of energy like the rest of us can do.  The satiety signal is definitely not great.  Sometimes she will declare herself full, but it is rare.  Basically, she knows when she needs food (most of the time) but would eat more than necessary if she were not using her brain (and us) to limit portions.

It's not a perfect system and I do look forward to someday freeing her from so many restrictions, but it truly is a good life.  She is happy and healthy and content even though she has to work hard and be careful.  She is a fantastic example of doing your best with what you have and enjoying life to the fullest.

Friday, August 1, 2014

Problem Solving

This morning I went out and ran some errands.  Okay, so I took a quiet breakfast to myself at Hardees and read a news paper then ran some errands.  I left Noah in charge of Ayden Jane with breakfast done and AJ dressed.

About 11 o'clock I got a call from Noah.  Apparently, Ayden Jane had asked for a snack and as Noah was talking with her trying to figure out what was okay food wise.... AJ lost it.  Some of you will understand what that means.  It does not happen often for Ayden Jane (as long as she stays healthy) and for that I am thankful!  It is hard to explain if you do not live with it.  Basically, she just gets over emotional, cries and argues and cannot reason or think through anything.  There is not much to do but let it pass and then deal with it.

Luckily, when Noah called I was pulling into the neighborhood.  I diffused things and after a few minutes Ayden Jane was ready to talk about what had happened.  She began to smile and giggled that the argument was silly.  She told me Noah still loved her when she even though she was difficult sometimes.

Then she came out with this question:  "does Prader Willi Syndrome make me loose control for no reason sometimes?"  Wow.  Loaded question.  Short answer - YES.  Definitely did not want to give her any excuses though!  So we had one of our famous long discussions ... which I ended with no matter what the cause, you need to learn to use your words and smart brain to solve problems before you lose it.

Ayden Jane answered, "I'm pretty sure I can do that.  So, should I use my words to tell Noah I am sorry first, or eat lunch first."

A couple times during the day she was getting frustrated with Mckenna (who tends to like to push AJ's buttons...) and she told her, "I am using my words to tell you I don't like what you are doing and I want you to stop.  I'm going to lose control if you don't listen."  What 6 year old talks like that!  She is hysterical and her understanding of her own challenges and effort to over come them continue to amaze me.