Tuesday, December 31, 2013

Grandma and Grandpa G

Christmas 2013 is done.  It was great, but .... complicated.  Sunday, December 15 we got the call that Gary's mom passed away.  It was a shock and we knew Gary had to head to TX.  We did not want him driving it, or going through it all alone so Kayla went with him.  Noah and Mckenna stayed behind with me as Ayden Jane had so much pre Christmas stuff to do and my parents had an upcoming wedding anniversary that I needed to help get my Dad to ...  It was a very complicated week.  (trust me, I am skipping a lot)

Gary spoke at his mom's funeral and I would have loved to be there....  It was small, mostly just family and not a dry eye in the place.  He got to spend lots of time with his dad because they went out early and Kayla spent some time with her cousins.

When I told Ayden Jane that her Grandma G died, at first she was a bit speechless.  (that never happens!)  Then I told her that Grandma G was in heaven with Jesus and her expression just relaxed.  Then she told me, "It's okay Mom, I will still make pictures for her and send them to Grandpa G.  Then he can take them to her when he goes to heaven."  We talked a bit and I told her that Grandpa did miss her and she decided that she would draw him pictures of Grandma so he wouldn't miss her so much.  The kid has a solution for everything.

Today (2 weeks later) I was on the sofa talking to Noah.  Ayden Jane came over and out of no where she asked when we can go see Grandpa G.  I told her that it is a long way but we will plan a trip when we can.  She asked again, but when.  I told her that Daddy is working on it and she can ask him when he wakes up.  She burst into tears and said, "but I want to go see him before he dies like Grandma G."  Wow, guess she has been holding that in a while! 

Thursday, December 19, 2013

Typical Kindergartener

Yesterday I had to go out of town for a few hours. Noah was in charge starting about 1:30 for PT and had her until about 6 pm.  In Ayden Jane's terminology it was a Noah day.  She loved it.  Noah helped out with PT and then took Ayden Jane to soccer with him.  He wanted to play pick up but wasn't sure how she would hang.  Apparently she was awesome.  Afterwards he took her to a local pizza and sub shop where he got her the special supper he designed for her last summer, (he works there) a meatball, grilled onions, peppers and cheese.  I was back at about 6 and AJ was in the bath tub chatting away and happy as a clam.  She finished up and wanted Noah to help her get dressed because he had promised they could take the dogs for a walk.  What a great brother!  He was technically off duty, but humored her and away they went.

When I asked him how AJ was he said she was great for him.  That she is so easy to take anywhere.   I'd have to agree with him.  She has been so incredibly easy lately.  Her brain is thinking clearly and quickly.  Her energy is way up.  Seemingly no afternoon lull.

Today I went to Ayden Jane's Christmas party at school.  I wasn't really planning on it but they decided to have a pizza party and Ayden Jane wanted me to make pizza she could eat it with her friends...  How do you say no to that??

While there, I watched her completely fit in.  I know that sounds like a strange thing to say (unless, of course you have a kiddo with some extra stuff going on) but a friend called her over to meet her little brother, she chatted with the other kids, she moved about the classroom with ease, she picked up the juice box she knew she could not have and gave it back to the room mom saying with a grin,  "you know I can't have this.  What were you thinking?" 

A couple of her friends passed out goody bags with candy and she brought them over to me.  She pointed to the different candies and decided which ones each of her siblings would get.  Just thrilled to have something to give them and not even a thought or care about eating them. 

The chaos of 23 students filled with Christmas excitement was not even the slightest issue for her.  You have no idea how that blows my mind.  This kid just keeps defying all the odds and she doesn't even know it :)  She is just being a typical Kindergartener...
 

Tuesday, December 17, 2013

Life is not just PWS

So I really do my best to keep this blog about Ayden Jane and PWS because, well, that's it's intent.  Hopefully, there is some benefit to some family along the way who has taken time to read.  Life, however, is not solely about PWS. 

As we navigate and worry about all things PWS related, other stuff happens too.  Our kids have been blessed to have four grandparents who love them dearly.  They pray for them and spoil them.  Their lives are tremendous examples of how to live and love.  Combined they add up to about 120 years of marriage!! 

On my side, my father is a fair ways down the Alzheimer's path.  It is rough road with many casualties.  His health is okay but his life is frustrating.  He is a Marine.  He was a very successful business man.  He was the guy in charge and he commanded respect just by his demeanor.  He was a numbers guy.  He was an athlete.  Inside he is still all those things but he now lives in a very uncooperative body as his mobility is failing him.  The connections in his brain from the disease makes communication very hard.  My mom shows the meaning of commitment and love rolled into one with how she cares for him.  I know that her heart breaks daily for him and that she must miss him terribly even though he is right in front of her. 

Gary's mom passed away this past weekend at age 84.  She and his dad, if you include dating, had been together for 72 years!  They still held hands as though they had only been dating a short time and they laughed constantly.  She was not in great health, but it was still a sudden loss.  He was serving her breakfast when she had a heart attack.  A short time later in the ICU she was gone.

So this Christmas season we will say goodbye to Grandma G here on earth but rest in the knowledge that she has a new, healthy body as she dances in Heaven.  Gary will travel to TX for the services and speak as his Mom requested.  I will stay here and enjoy my parents 57th anniversary with them, with dinner followed by a candle light service at church.

They have truly left a legacy of love and commitment and family for Gary and I and for all four of our kids to witness.  We are blessed.

Tuesday, December 10, 2013

Christmas is Coming!

So what it Santa bringing Ayden Jane for Christmas?  We have a pretty good handle on things...

First up, she has asked Santa for an American Girl doll.  Ummmm.  Way too expensive for us, but a friend was looking for a new home for one that her much older girls no longer want.  Sweet!

Next, something for our little reader.  Ayden Jane has loved learning to read and we have used the Bob Books to get her started.  She is now able read all of the first box so she will get the next set.  Also, she is struggling a little with rhyming words and there is a set of books to work specifically on rhyming so those are headed our way too.  Anyone looking for a way to introduce reading to their little ones can't go wrong with the Bob Books.  All 4 of my kids loved them.  Well, loved learning to read with them.

Ayden Jane does enjoy popping beads together and building things so we decided it was time to upgrade the few things she has like that.  We chose not to go the lego route and instead go with  Zoobs. We got the giant bucket so she can build with her friends C and C :)  I can't wait to see the crazy things they all come up with.

Since we live in SC and the weather is good for outdoor fun most of the year I always like to get outdoor toys for the kids.  Ayden Jane has actually used her little scooter so much that she has worn it out, so a new razor scooter will arrive with flashing wheels!  That should be fun on dark winter evenings.  Not to mention safer!

There will be a few other things along the way but I am thinking Santa is off to a good start.  It is always interesting to balance getting toys that are just for fun and getting the therapy type things we could use.  I know that AJ will be ready for a new bike soon, but I think she needs to put a bit more effort into riding her current bike.  Since we can get outside so much of the year we have not gone to the Kinect type system.  I know that some of our PWS friends to the north use them a lot to keep the kids moving. 

I am noticing that Ayden Jane needs more activity in her day.  Luckily she likes to walk and I think running is in her future.  It is hard, though when school takes up a large part of the day and then it gets dark so early.  I look forward to when she can get further involved in a swimming program and things like that.  (yes, I just get tired of doing all her exercise with her:)  She is so close!


 

Saturday, December 7, 2013

Silly AJ

Ayden Jane is still on Augmentin for an upper respiratory infection.  What happens to this kiddo when she is sick is a little crazy.  Basically, she started the Augmentin on Monday after showing her telltale signs of illness the previous weekend after 2 weeks of congestion.  Tuesday did not show much difference.  Wednesday was a meltdown of epic proportions.

I got a call from the school nurse.  She had Ayden Jane in her office complaining of a headache.  Her temp was 99, ears looked good...  I told her that she had been on antibiotic since Monday and I would be picking her up soon anyway (PT day) so just let her go back to class and I will get there.  I arrived and peeked in the window.  Ayden Jane was playing with some blocks and seemed fine.  Once we cleaned up and grabbed her things I touched her.  Holy cow she was roasting!  Of course she had decided to wear a sweater and the weather turned hot...  Didn't occur to her to take off the sweater! 

We got home and I asked her to take off the sweater to cool off for a few minutes while she had a snack before PT.  You would have thought that I shot her!!  It was a fight I had to pick because she needed to cool down.  She does not have temperature regulation issues typically (many kids with PWS do) but I think her body was just working so hard to fight off the infection and the added sweater on a 60+ degree day was just overheating her.  She refused her snack and argued and cried for nearly an hour!  Luckily it was a 90 day evaluation day which meant that mostly Jen and I just needed to chat.  Eventually she ate a few bites and then fell sound asleep for 2 hours.  When she woke up she was cool and fine...

She finished out the week gaining a bit of steam each day.  Fast forward to today and she is a whole new kiddo!  She dictated one of our super long walks and she was cracking me up the entire way.  She was funny and conversational.  I love when her wit shines through.  When we got back I sat down and had a drink.  She came over next to me and asked for a sip.  I gave it to her and she informed me there wasn't much left.... That was a hint that she was going to finish it off.  She asked what I was going to do if she didn't give it back.  I said I would sit on her.  She giggled and said that if I sat on her she would die and I didn't want her to be dead right?  So I should go get my own darn drink out of the fridge.  Ha!  That was my own darn drink!

It is good to have her heading back to full steam. 

I have to say, on the sad side, her belly is definitely distended.  Her gut gets so stinking thrown off by the antibiotics but they will be done soon.  Hopefully I can get that belly back on track soon.

Thursday, December 5, 2013

Interim Report

Kindergarten report cards are basically boxes with checks or 'x's' and general comments about how the kiddo is doing.  It was great to get Ayden Jane's sheet with lots of checks showing she has learned every skill she is supposed to by now.  Her teacher goes a little further and does a quick assessment with the kids to give a little more information on how the reading skills are coming.

 
In the first picture the highlighted things are all the ones she got correct!  This page shows she knows all the letters and the sounds.  She also read most all of the sight words she is supposed to know!  She informed me as we were looking at it that she now knows how to read do and see so she will get them all next time.  (of course they'll be different...)  The second page shows she still does not get rhyming words and is just starting to get syllables but she did great on sounding out the consonant/vowel/consonant words!  I'll take it!
 
She is learning so much and is so happy at school.  I wish every year could be this awesome!

 

Wednesday, December 4, 2013

Crazy Kid

Yesterday I was cleaning and I removed sofa cushions.  Much to my surprise I found a months supply of probiotics!  (yes, that means I have not properly cleaned in a month...)  A lot of things suddenly began to make sense!

I noticed Ayden Jane's belly distending a bit.  I started to slack off on the iron because it can back you up.  I added back in a gummy probiotic.  I started to push fluids...  All little things that usually get things going again.  Jen even noticed it last week at PT and commented.  At first she thought there was some lumbar curve thing going on then she realized it was just reactive of the big belly!  I was still just scratching my head!

After the good, long, hard swim in the pool she had some relief.  Major pipes emptied and stomach flat.  Well, here we are Wed. of the following week and it's back!

Now to be fair, she also had a cold 2 1/2 weeks ago that she hasn't been able to shake.  We went in to see the pediatrician and are on Augmentin.  It is awful!!  She is miserable and a terror.  Today was the first meltdown I have seen in months.  She actually did not really want food, she is just so argumentative and emotional.  Soooo hoping she shakes it tomorrow because I am not sure how much longer I can handle it!

I brought her home today and she was sweating and complaining her head hurt.  Well, it was hot out and she would not take off her sweater!  I made her take it off to cool down and you would think I took off her right leg!  She refused to have a snack and she argued ...  After she cooled down and fell asleep for a good long nap she woke of much better.  It is amazing how everything gets thrown off, even the ability to regulate body temperature!

Hoping that tomorrow brings a breakthrough in the infection and some relief for us all!

Monday, December 2, 2013

Thanksgiving


For Thanksgiving, Gary had to work so the kids and I were off to Grandma's house.  We brought some of the Thanksgiving meal and Grandma made some and together we pulled off a nice supper.  My little meat eater was very happy with the turkey leg!!


 
There was a time when I stressed over Thanksgiving (or any big meal for that matter) and I suppose there will come a time again one day when big holiday meals will be a concern.  For now I can honestly say it was really stress free!  Ayden Jane had her turkey leg, some green bean casserole, a few mashed potatoes (a treat for her) and some applesauce and thought she was queen for the day.  She enjoyed the big family meal with her college siblings home and Grandpa and Grandma.  Honestly, she had eaten breakfast but basically skipped lunch with all the excitement.  There were a few pies to choose from when desert time came, but Ayden Jane was very excited about her ice cream so a few scoops of that and she was basically done for the day.  It was a breeze.
 
 
After the feast (as AJ calls it) the kids put up Grandma's Christmas tree for her.  (or played in the box)
 


Just love this one of Kayla and Ayden Jane.


Friday, November 29, 2013

Swimming Part 2

Ayden Jane finally had her swimming lesson with Coach R.  He was awesome with her.  Ayden Jane had literally been counting down the days (twice) to get to go.  She did all he asked, worked really hard and loved it.  By the end of the one lesson she was swimming freestyle so much better!  It will take some doing, but I am going to try to get her in the pool with Coach R once a week until Christmas rolls around.

So, why am I so excited about swimming?  First of all, Ayden Jane is genuinely good at it.  I mean good for a typical kiddo.  It is so awesome to watch her do something that comes easily and naturally for her.  Maybe it sounds awful, but it is honestly great to watch her excel over other, typical kids.  Trust me, we have plenty of time to 'build character' in other activities.  When she is in the water, it's like the playing field evens out and that hard working nature makes her excel, not just keep up.

Secondly, it has always seemed to calm her.  I don't mean makes her tired, not that sort of calm.  It sort of quiets her sensory system and makes her able to focus tremendously well.  For example, today she spent time playing with play doh, working on writing letters and 'painting' (with water).  Things I love for her to do as fine motor is her weakness, but she struggles with doing for extended periods.  She followed that up by reading 10 books!  Yes, 10!  I was amazed at how sharp her reading was (well for the first 5 or 6).

As a bonus, the rigorous exercise helps 'clean out her pipes' and she is oddly less hungry when she has had a good hard swim.  So, today she had breakfast, a snack before swimming around lunchtime, some green bean casserole and mini almond butter muffin after swimming followed by a long walk with the dogs. Now it is bed time and all she wanted was a few apple slices instead of supper.

No doubt I am calling Coach R Monday and getting things nailed down to get this kid swimming at least once a week!

Tuesday, November 26, 2013

Thanksgiving Kindergarten Style

 
Today was the Kindergarten Thanksgiving feast.  For some kiddo's with PWS (and their parents) holiday parties at school can be stressful.  Okay, any parties at school can be stressful!  Just the idea that there are lots of foods and well meaning adults doling out all sorts of treats and drinks...  Yikes!
 
Honestly, we have been blessed in that Ayden Jane handles these things really well, the parents we have had in her preschool are amazing and her schools go way above and beyond  Here is how the 'feast' went this year.  Each Kindergarten class was responsible for 1 item.  There are 5 Kindergarten classes and the kids rotated through the rooms to get something from each room.  I texted Ayden Jane's teacher the Friday before to get a clearer picture ... She responded that she had already put a sheet in AJ's backpack that listed each room and what they would be giving the children so I could figure out what Ayden Jane would eat and what she wouldn't.  Sweet!
 
The 5 things were: turkey sandwich (1/2), carrots and ranch, grapes, ham roll-up, trail mix and a pumpkin muffin.  I sent in a small nut snack for the trail mix and a grain free almond muffin for the muffin and Ayden Jane was good with the rest!  (of course she did not eat the bread and saved it for the dogs....)  We also talked about how we would not need an afterschool snack since this was so late in the day.  She was totally cool with that.  It all worked out great!!  She was one cute Indian!
 
The only disappointment this week was that the swim coach called and had to postpone her swim lesson until Friday.  (His son was sick)  Ayden Jane took it well but now has me counting down the days until Friday!  Hopefully the return of the big kids for Thanksgiving Holiday will help distract her!

Saturday, November 23, 2013

Swimming

It is winter...  It gets dark too soon...  It is cold... (well, cold for us)

So what is the answer to the lack of opportunity to exercise?  Swimming.  Well, indoor swimming.

I am taking Ayden Jane to the local health club which has a new aquatics director.  I heard he is good so I called to chat with him about options for Ayden Jane.  It is hard to know when to say anything about Ayden Jane's challenges because I want them to treat/push her like they would any kiddo.  I also don't want to scare them off! 

Basically, I told him she has a rare genetic disorder that effects her motor planning and muscle tone.  It means that it will take her a little longer to lay the new motor pathway and that she may not be able to just watch and magically make it happen.  She needs things broken down and help figuring out which muscles to use sometimes.  On the flipside, she will work at it until she gets it!

He was not deterred in the least and thought she sounded awesome.  We decided to go with a one on one lesson to give him a chance to see where she fits.  He has a group that is likely a little behind her in skills and there is a swim team.  (the ultimate goal)  If she is close to having what she needs to join the swim team I will just have him do a few lessons with her until she is ready.

Ayden Jane is THRILLED!!  She told me tonight she wanted to go to bed so that she could wake up tomorrow and only have one more day until she got to swim.

Can't wait until Monday! 

Wednesday, November 20, 2013

Swagger

There is a boldness and confidence about Ayden Jane.  Sometimes I am in awe of how she approaches everything just knowing that she can do it.  She totally believes in herself and almost doesn't even see the things she can't do.

She played soccer this fall.  Well, she was on a soccer team this fall.  She had her moments where she was right in there but by and large she just runs up and down the field... She does not kick well and timing running and kicking?  Nope.  In fact, she can't even make up her mind which foot to kick with!  So, if you ask her about soccer she will tell you she is awesome.  She will try her best if you ask her to do something and then be proud of her accomplishment.

She is the same with reading.  She is doing a great job and is a pretty average reader.  Ask her and she will tell you that she reads very well and in fact can read anything.  ha.  She recognizes that other kids are better at reading and some not, but she doesn't really care what other kids can do.  It is awesome.

Last night we were at Mckenna's cross country banquet.  The coaches talked about the effort put in and the improvements kids made.  They talked about how, through running, the kids found confidence and a belief in themselves.  Ayden Jane listened intently and asked me how long they had to run fast.  I said about 20 minutes and Ayden Jane grinned.  I know I can do that when I get as big as Mckenna.  I am going to run cross country mom.  Yep.  Swagger.

The flipside is Mckenna.  She is beautiful, athletic, smart, musical, artistic and a middle school kiddo.  She lacks swagger.  She approaches things unsure of whether or not she can do them.  She is so talented she should have loads of swagger, but it is just not there.  She ran cross country this fall and when she started she honestly could not complete a mile running.  She worked at it (holding back of course) and was thrilled when she finished her first race.  Her time?  30 min....  As the season went on she continued to improve but still always held back.  In her final race she was chatting and making a friend. lol.  We are so proud of her season ending time of 25:34 and look forward to her gaining a bit of swagger over the coming years.

Mckenna is an awesome kid and I often wonder if some of her lack of confidence comes from Ayden Jane.  Maybe it comes from the attention she did not get when she was little because we had to pour time into Ayden Jane.  Maybe realizing that there are things that mom's and dad's can't fix was too much for her.  Maybe having two amazing older siblings she doesn't think she can live up to plays in as well.  Who knows.  What I do know is that I see the beginnings of swagger.  Just glimpses here and there and I am hoping and praying for Mckenna to attack life with the same confidence and swagger that Ayden Jane does.  Heck, Mckenna has all the talent to back it up! 

Monday, November 18, 2013

The Balance

Sometimes I wish that there was someone or some way we could see inside Ayden Jane, all the way down to the cellular level, and figure out what makes her function so well.  I know it sounds strange and a bit like wanting to do a science experiment on your own kiddo, but I really wish I knew what is working so well in her that sort of over rides the PWS.

Basically, when she has the right diet, stays healthy and has the necessary dietary supplements she presents as a typical Kindergartener.  When she gets ill (especially with a bacterial infection) pieces of PWS pop up.  Things like food interest/seeking.  When we let the b-12 wash out her preschool teachers were really worried about her and it was so bad they had to remove her from the classroom.  When she ate a heavy carb load it was ugly.  Her behavior was awful, her speech was awful, she became lethargic and fell asleep waking up with a nasty headache...

I know most kids with PWS don't respond so dramatically to little changes in supplements or diet or even illness.  It is like I can watch her go from a kid with PWS to a typical kiddo by changing what goes in her. 

This was all brought to mind this past weekend when Ayden Jane picked up a little virus.  Her body still responds to viral infection without too much trouble but her speech was slow, her right eye (strabismus) started to turn in again and she slept a ton.  She is feeling much better and has returned to her typical self.

The flipside in this is the ever present feeling that although she is doing so great, it could all fall apart at any moment.  Such a precarious balance and the only way to keep it going is a bit of trial and error.  Yep, takes me back to wanting to be able to see inside those cells!

Tuesday, November 12, 2013

Jackets - Not So Fun

So Ayden Jane is cruising along these days. It is easy to almost forget that she has added issues to deal with.  Then little things like this pop up.

The weather is changing.  Like it or not it is getting colder and Ayden Jane is going to have to cave on her, "no winter clothes until Christmas" mantra.  Today when she got dressed in her tiny shorts and little short sleeve shirt, I decided it was time to take a coat to school.  I know, what a horrible mother to make her take a jacket!  Yep. It caused a meltdown.  After a few minutes in her room to get herself under control she decided it was okay to take it but she was not going to wear it unless her teachers said she had to.  Deal.  She still cried a bit off and on and was totally stressed by the whole thing but... I just hung tough.

On the way to school Ayden Jane asked me if I would walk her in since she had a jacket.  Umm, sure but aren't you the same child that would not even let me walk you in the first day of school?  We parked and walked in.  Yea, she cried a bit but I'm sure she is not the first kindergarten kiddo to shed a few tears at school. 

When we got to her classroom she went to her hook and said, "see, I don't think I can hang up everything with a coat and I have to have my bags!"  (spoken with the voice of a very stressed 6 yr old)  Ahhh, the root of the problem.  She has a system of knowing where everything goes and she just couldn't picture where the jacket would fit in that picture.  I just showed her that her lunch box could fit in her cubby and then there was plenty of room on her hook for her jacket.  She was instantly happy and had a great day.  Sheesh! 

I did mention to her teacher that she hates coats and does not get cold easily so I am not concerned if she does not wear it often.  She was glad to know that.  I told her that I knew times would come when they would tell students they had to have a coat to go outside and I did not want her to have to deal with the fallout from AJ having no coat and having to stay in!  Also, I told her that AJ is not so good at getting her jacket on and gets upset by that fact.  (Maybe if she wore one more that 3 times a year she would get better at it!)

I guess it is easy to forget that clothes don't always feel good, having extra things to keep up with is stressful and adding a bit of motor planning and frustration (putting on a jacket) to the joy of going outside is not fun.   We will see how tomorrow morning goes :)

Thursday, November 7, 2013

Glasses

About a month ago Ayden Jane lost her glasses.  I was sure they were at the house, just had no clue where!  We found them a few days later in the backyard ... broken.  I mentioned getting them fixed and she protested that there were so many lines in them she can't see through them anyway.

It was time to head back to the eye doctor anyway so I just let her go without them.  Today we had the eye exam.  Her eyes are actually getting better!  Her prescription previously was for 2.5 in each eye and now it is for 2.0.  (eye don't speak eye but improvement is improvement).  Also, I mentioned that her right eye that used to turn in occasionally no longer seems to.  She has not had her glasses for about 3 weeks and she has done great.  Doc said yep, that all the way around her eyes were doing better.

It was pretty cool that now she responds so well that they could ask her to name letters instead of pictures and he lined up some different things for her to look through and he could not just test, but ask her which way it looks better to her.

She is doing really well with reading and her writing is... improving, but still needs a lot of help.  I am really hoping that the glasses help with that.

In a week or so we will have new purple and blue glasses! 

Wednesday, November 6, 2013

Look, No Training Wheels!

video
 
 
A while back Ayden Jane asked to have her training wheels off so she could learn to ride her bike on two wheels.  It must have been Sept. because she was determined she would learn when she turned six.  We worked on it a couple of days but she seemed really far from making it happen and was just nervous enough that she would not allow us to help her.  Ummmm.  In case your wondering, it is hard to teach yourself to ride a bike with zero help getting going.
 
After the few days the bike was left in the garage, training wheelless and lonely. 
 
Renewed interest in learning to ride came as the big trucks rolled in and paved our road!!  Seriously, it was like a holiday celebration here.  I texted Kayla and Noah because it was a 15 year dream come true!!!  They had hoped their whole childhood that the road would be paved and roller blading, hockey, skate boarding.... would all be awesome on our street.  I am thinking Christmas this year will include them reliving their childhood dream skating with Ayden Jane :)
 
So, today the weather was good, the road was paved ... It was time to give it another go.  In about 20 minutes she was riding solo.  (sort of)  Jen got her started and ran with her in case she needed to catch her.  It was wobbly but she did it!  One more thing that was supposed to be too hard ... ha!  Too hard?  It only took 20 min.  (yea, I know it will take a lot longer to perfect, but I am claiming this victory now)

Tuesday, November 5, 2013

Homework

I have a confession.  I am terrible at having Ayden Jane do her homework.  In fact, I really don't even like that we have homework in Kindergarten.  That's a big confession for a teacher!

Ayden Jane's teacher is great.  Actually, even her homework system is great.  Ayden Jane has 'required' homework on Wednesdays.  The rest of the days there are assignments on a calendar for the month.  The ideas are simple and they are just small things we can do to reinforce what the kids are learning in class.  (okay, fine.  I have no reason to complain about homework)

I have not been great about creating homework time and doing the smaller activities with Ayden Jane.  I decided it was time to step up as mom.  So, tonight's assignment was to write 10 sight words.  Hello?  I didn't even know that Ayden Jane knew what a sight word is!

I offered to help since I was sure that she could not even name 10 sight words let alone begin to spell them!  You would think I would learn.  First of all, Ayden Jane does not need help, just ask her, she will tell you she already knows everything :) 

So how did she do?  If you looked at the paper you would have no idea what she knows, but watching her do it and listening to her sound out the words as she writes them....  Holy cow she knows so much more than I thought!!  She thought of and spelled 8 sight words on her own.  Sure there were mistakes, but only the kind that some from the English language being so complicated.

Let's see, she knew exactly what a sight word was.  She could name them.  She knew how to spell most of them!  You would think by now I would stop underestimating the kid.  I feel like Marlin in finding Nemo.  "you think you can do these things Ayden Jane, but you can't"  Apparently, she can.

Saturday, November 2, 2013

Soccer Adventures

Our day started with a trip to soccer fields in Charleston for Mckenna's game.  It rained last night and I envisioned Ayden Jane having little to do and being wet and miserable.  At first I did not remember this particular field so I did not think there was a playground.  What a great surprise when we arrived and the grass was not so wet and there was a great little playground!  Ayden Jane played and played during the 45 min. warm up and pretty much the entire game!  It was great.

On the way home I mentioned to them that Noah had his last home game today as well.  Yep, they both wanted to make the trip to go see Noah.  After the hour or so back home, a shower for Mckenna and Ayden Jane and some school work completed by me it was off to see Noah.  (just over 2 hour drive)  The girls were great.  Ayden Jane slept about half way there and was seriously wound up at the game!  She wrestled on top of me during his warm ups and entertained herself during the first half.  Then the big surprises arrived!  Kayla and Allie made the trip from Clemson!

The game was a blow out, Noah did not play at all the second half so Kayla still has not seen him play college soccer,  but Ayden Jane was on a roll entertaining everyone!  Mckenna kept giving her crazy 'missions' which included singing and animals sounds and general silliness.  (Mckenna will be an amazing therapist of some kind one day) 

After the game Noah was so happy to see his sisters.  So fun to see them all enjoy being together.  We took Noah out to eat and just hung out a while. 

Such a fun day.  And to think, when Ayden Jane was tiny and Noah was still playing club soccer, we wondered if traveling and eating out would ever be possible again without much stress.  I can officially say, PWS does not impact our traveling soccer adventures (well, other than we try not to stop as often)

Friday, November 1, 2013

Happy Halloween

Yes, a Happy Halloween post without pictures.  I will post one when I get one.

I have to say that even before PWS Halloween was, well, not my favorite holiday.  Let's see, I dislike all things creepy and scary.  I am a total wimp with scary movies and hate all the previews that come out this time of year.  As a mom all that candy is ... not optimal and when I was teaching, oi! 

Now add on top of that Prader Willi Syndrome.  I really thought early on it was going to be a nightmare!  I envisioned candy at every turn and Ayden Jane spending her day sneaking food and me having to stay one step ahead of her.

The day before Halloween Ayden Jane's teacher read Gordy and the Magic Diet to the class.  It ties in with Halloween and the holidays and is a great story for a kid on a no junk diet.  The teacher really liked it and said that she thinks it helped make sense for everyone why Ayden Jane eats the way she does. 

So, how was Halloween?  A breeze.  Ayden Jane loved her day at school.  She came home and informed me that they did not do any school work all day long.  All they did was play!  She wore a dalmation costume that was comfortable enough to make it though the day.  I had not done any planning ahead with the party moms and it was the first party in Kindergarten.  I slipped out of work and arrived just after food was passed out.  Apparently when the mom who had never met AJ attempted to give her a chocolate covered something on a stick, Ayden Jane told her there was no way her mom would say yes to that.  Lol.  Then she told her she can't eat sugar.... Apparently she was impressively convincing.  All in all Ayden Jane did great and I have just a few things to tweak for parties in Kindergarten and all will be well.

The big night came and Ayden Jane was amazing.  She trick or treated with Gary and Mckenna and Mckennas clan of friends.  She didn't wear out (guess that's the 5K training) and never even asked for a piece of candy.  At the end of the night she fell sound asleep on the sofa after putting her candy out for the great pumpkin.  We packed up the candy and replaced it with a toy and Halloween was officially over.  Whew!!

A win all around.  A happy worn out Ayden Jane and candy to 'donate' to our starving college students :)

 

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

Kickball

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.

Monday, September 30, 2013

Birthday Wishes from Clemson

Ayden Jane's birthday is not officially until tomorrow, but she was spoiled rotten all weekend by Kayla and her friends from Clemson.  It started Friday night when they arrived and played on the trampoline with her.  It was so fun to hear all the squeals of laughter through the window.  I think Ayden Jane outlasted them!  When they could jump no more they came in to read books.  How cute is this?


The main event was on Sunday.  I took Mckenna to Charleston for a soccer game and the Clemson crew took Ayden Jane on a day of adventure.  The grand finale of it all was a trip to Build-A-Dino.  Ayden Jane told me all about how they kissed the hearts and stuffed the dinos.  Then about bathing them.  Of course she had to explain that they actually used air and not water but still called it a bath.  We walked the dogs after the crew left and Ayden Jane recapped her day for the entire hour.  Some of my favorite quotes were; 

This was the best day of my whole life! 

Today makes me six already because it was the best birthday ever.

I went in and when I saw the one I picked I totally knew that was the one I wanted.

Well you get the idea.  Here are a few pictures of Ayden Jane's dinosaur birthday.


 


Sunday, September 22, 2013

September

September is going by so quickly.  I feel like there is so much I should be writing about, but it is all coming so fast I don't get the chance. 

One thing I will be working on in the coming week is ketones.  I am waiting for our blood ketone monitor so we can finally answer the question once and for all, is Ayden Jane generally in ketosis.  I have been sort of slow to measure and track ect., but I just felt like I can tell what Ayden Jane needs food wise.  It is time to figure out if what I see on the outside matches what we think is going on in the inside.

The 'we' in that statement includes myself and a few crazy smart medical minds.  (and good friends)  Here is a very simplified (because that is all I can handle) version of what is being discussed/investigated by these smart folks.  We know that people with PWS have an impaired carbohydrate metabolism.  Remember Ayden Jane and her Krebs Cycle?  So, if they are not good at using glucose for energy, what do they use?  Fats.  Yep, the dreaded word in the American Diet. 

The brain can use glucose for energy, however, in the absence of glucose the liver can metabolize fats and turn them into ketones.  The PWS body has trouble using the glucose properly (although I don't entirely understand the details) so that the brain and body are not fully energized and much of the glucose is stored as added fat mass.  The PWS brain and body seem to use ketones for energy efficiently so now you have a happy brain and body.

So, this is the basis for feeding a person with PWS low carb, and I am talking no grains or sugars and generally low glycemic index fruits and veggies.  Some parents are sticking with as low as 20 grams of net carbs per day.  That is hard.  The diet is actually called a ketogenic diet and is used in treating patients with seizure disorders.  Yep, good for the brain.  We are not likely on a true Keto diet, but likely close.  Ayden Jane eats too much fruit and I add honey to a few things and she has a few carbs in her supplements....  But we definitely have never feared the fat.  In fact, avocados and flax meal and butter and eggs and nuts have been her staples since the start.

So, how does AJ fare in all this?  I discovered this week that she is the oldest kiddo to start eating this way pretty much from the start.  I did not set out to be a rebel or ground breaker.  It was not even my idea to feed her this way!  lol.  I just read what a couple of these brilliant folks wrote and watched Ayden Jane.  She made it absolutely clear that grains and sugars crashed her system.  She made it obvious that she had lots of energy and felt good when she ate fats.  So I just kept it up.  I didn't have any other nutritional guidance until she was 2.  That was the first time Ayden Jane saw Dr. Miller.  She ran an analysis of her diet and gave it a stamp of approval as well as being thrilled with how AJ was doing.

So, coming full circle, I realized this week that it is important to know what is actually going on inside Ayden Jane.  Not just think I know.  I don't expect to change anything but Ayden Jane could provide some information to these smart ladies.

What they are thinking is that Ayden Jane has learned to use fat very efficiently.  Almost preferentially so that her metabolism slips into ketosis quite easily.  Among the questions are is she in ketosis even though she is not on a diet that would create ketosis in a typical person?  What level are her blood ketones?  What level are her ketones when I feel she is really 'on'?  What is she burning for fuel when she goes and goes and goes?  How do her ketones fluctuate over the course of a day?

So, as Ayden Jane works on getting ready for her 5K, I will be using her as an information source.  Good thing she thinks having her blood checked is cool ;)

Thursday, September 19, 2013

Odd and Ends

So much is going on and I am way behind.  Let the rambling begin! 

First up, our endocrinology visit and labs.  Hey, lets get the boring stuff out of the way.  We saw Dr. Clarke and our weight and height check was good.  Not perfect, but she is sitting at 90th percentile for height and 95th for weight.  That brings her BMI back in check from our last visit.  Basically she looks good.  Maybe not as lean as I would like, but definitely comparative to our other kiddos at that age.

We drew labs as well.  I thought that we were going to leave with orders for fasting labs, but we just drew them instead.  So the results?  Mostly all good.  Mysterious eosinophils still a big high... IGF1 a bit high and cholesterol high.  Soooo, we are going to draw the lipids and IGF1 fasting to see where that leads us.  I am just not worrying about it until then.

For now we are choosing to just concentrate on the One Small Step walk.  Ayden Jane is having so much fun with it.  She even asked me tonight why all those people are coming to walk just for her.  She also occasionally comments when she looks at her growing chain, "wow Mom, look how many people love me and are cheering me on!"  It is so cute.

Kindergarten seems to be going well.  We did have our first meltdown tonight over handwriting.  I have a feeling it is the first of many to come:(  It is hard for her and she sees that her peers can do it.  I think it is time for me to figure out how to hit it harder.  Any suggestions?

Friday, September 13, 2013

How Food Changed Ayden Jane

Lots of people have asked me about why I chose, back in the day when diets recommended for PWS were more along the lines of calorie control than anything to feed AJ as I do.  First of all, I learned from what L was figuring out with K.  AJ was just diagnosed around the time L went low carb ect. with K and it just made sense.  Also, O was wonderful and accessible by email and the yahoo group was a great source of info. I figure it is easiest for you to just see it.
 
This is Ayden Jane at about 5 months just before we introduced cereals.
 
 
This is at 7 months after 1 month of cereals and other baby foods.


 
This is 8 months after more cereals and baby foods... just diagnosed!!
 
 
Here she is at 10 months after we went zero grain, low carb, pushed fats and started supplements.  The mischief to come is beginning to show.
 
 
Now at 11 months with one full month of gh.  Wow I am growing and getting strong


 
 
This is 13 months.  Just 5 months post diagnosis and loving my new food, supplements (particularly b12 at this age) and all the energy.  I will be walking in just over a month!



 
And finally, Ayden Jane at 22 months showing signs of determination to come :)
 

Thursday, September 12, 2013

Running It All

Ayden Jane has a strange tendency to internally rotate her right leg.  It seems connected to the scoliosis issues, of course in a chicken and the egg sort of way.  Jen has been determined to 'fix' this and it is so cool to watch Ayden Jane run now. 

So, how has she been working on it?  First up is the basic orthotic in AJ's shoes.  She has had 'yellows' in her shoes since early on and just when I don't know if they are really necessary we get new ones and I see a good improvement. 

Secondly, she has done leg/hip exercises.  These are cool for me to see because in the beginning when Jen was trying to figure out just what was going on she discovered muscles AJ was just not using.  In fact, didn't really know how to fire.  Now those same muscles are strong and AJ can find them quickly.

Thirdly, we have been using a 'derotational strap' that Jen and Mr. Alan cooked up.  Ayden Jane does not wear it a lot, but she does when we walk the dogs.  (It amazes me what this kid puts up with)  Anyway, at first it gave her leg a lot of support/cueing.  We backed it down a notch now and I am hoping to do away with it one of these days.  What I can say is that watching Ayden Jane run now she looks so much better. 

Ayden Jane is ready to run and Jen and I were talking about 'training' for the 5K.  Jen said she wanted Ayden Jane to take the amount of running slowly up.  That she does not want her to run too much at this point...  Well, Ayden Jane heard our conversation and burst out into tears.  "But I want to run the whole race!  I don't want to have to walk at all!" 

So, where are we with it all?  Last night Ayden Jane ran our whole road 1/4 mile straight through.  She wanted to go more, but that was it for now.  Then we walked 2 plus miles and she begged to run the 1/4 mile back home.  She did it!  "Mom, this is hard but I can make it.  When we go to the race I will be able to run it all."

Sunday, September 8, 2013

Fun Visit

We really enjoyed our visit from 'the college kids'.  It was quick and fun and Ayden Jane is EXHAUSTED.  It's a good sort of exhausted though. 

Friday night was a trip to the HS football game.  We left about half time to come home and see Kayla and her friend Allie.  Yea!!  Ayden Jane hung on until 11 pm!  She did not let them out of her sight.  I think she was convinced that if they got more than 10 feet away from her they would be headed back to Clemson.  The girls spoiled her rotten and she loved being the center of the universe.

Saturday morning we sent her in to wake up Noah.  (she did not know he was home)  She enjoyed jumping on him for a bit before moving on to jumping on Allie and Kayla.

Off to the beach we all went...  It was a beautiful day but a bit rough in the ocean for her to show off her surfing skills.  They mostly swam and fought the current.  Kayla has pictures on her phone and I'll post them when I can!

In other news.  Starting tomorrow we will have C and C after school 4 days a week.  Ayden Jane is so excited.  It will be great for her to have friends her age to play with on a daily basis.  The boys are great and I am sure we will settle into a good routine.  My plan is snack and out the door!

I am still waiting to hear on the job front.  I think all the options I have heard mentioned work for me so I am not too worried about it, just anxious to know just what it is I will have to get excited about.

I am thinking it's about to get busy around here!

Wednesday, September 4, 2013

Surf's Up

We all know that when Ayden Jane gets an idea in her head...  You just have to let her run with it.  Over the weekend she saw a friend her age up on a surfboard.  The seed was planted.  Today when Gary woke up Ayden Jane ran to him and before he even really had a chance to become conscious she was informing him that he needed to take her to the beach and teach her to surf. 
 
Like I said, you just have to go with it when she gets an idea in her head!  Now, Gary has never surfed a day in his life and they took Mckenna's board which is a great board to practice on as a kid who is just starting, but not an easy board for a total beginner.  Not that any of that was going to stop Ayden Jane!  Gary had her climb up, pop up to a squat and then stand while he steadied the board.  It was pretty cool.  She didn't ride the wave far, but in her mind she was surfing and that's all that mattered!
 
 
 
 
 
 I'd say she rocked it for a 5 year old, let alone a 5 year old with PWS!

Tuesday, September 3, 2013

Labor Day and Stuff

So what do you do when the air conditioner maintenance guy has you trapped?  Write a blog post...

It's Tuesday after Labor Day weekend.  We had a great long weekend.  Lots of beach and pool time and a good bit of dog walking.  The energy stream just keeps flowing out of this kid right now.  The cold is running it's course but I have hopes it will pass.  I ordered more pharmaNAC (which I should have already had on hand) so starting tomorrow I should be able to double dose her on that.  Plus, she is so good at blowing her nose!!!  Hooray!!  She does not act sick at all.  In fact, she is running me into the ground!

Speaking of running me into the ground.  Mckenna has her first Cross Country meet today!  On Saturday we decided to head out and see if she can make the whole course.  She had not actually completed the entire course at one time yet.  I was really proud of her!  It was HOT and she definitely was not feeling good at around 2 miles.  She plugged on through and she finished the entire thing.  Hopefully the confidence will carry her through today!  (and I survived the run.  It has been a while!)

 Kayla and Noah sound like they are off to a good start for the semester.  Neither sounds like their course load is going to kill them (Kayla is only taking 3 genetics classes, public speaking and Spanish. LOL)  Both sound happy.  We here on the home front miss them for sure.  I think we had adjusted to Kayla being off at Clemson, but it is really new that Noah is not around.  The younger girls definitely miss him and even the dog keeps checking his room to see if he is home.  Glad we will be able to go see him soon.

As for me?  Well, there is a possible job on the horizon that I would LOVE.  A lot would have to fall in place (will require an act of God) for it to happen, but I am trying to be patiently hopeful.  If it comes through I will fill you in on the details!!

Sunday, September 1, 2013

Kindergarten Update

Ayden Jane is rocking Kindergarten.  I have only heard positive feedback so far from her teachers and even from other parents who have seen her around school.

A friend who has seen Ayden Jane around school during these first 2 weeks said that she, "seems so happy and full of energy.  She has the Kindergarten thing down."  Wow.  Could I ask for a better review?

Realistically, I don't know whether AJ is talking much in school or just taking it all in.  I have my suspicions that she is keeping to herself a lot, but that's okay too.  She is seated next to her friend C from down the street.  They are a great combination.  They are pretty similar in the need for structure and their ability to analyze (talk repetitively about) a subject.  Having C by her side gives her confidence even though I don't really think that they play together much during the day.

I am doing my best to just stay out of the picture for now and just let them get to know Ayden Jane.  I will get in the mix in a few weeks to see if there are any areas we need to work on.  I really want the teachers to tell me anything we can work on.  It is a bit challenging because I am asking them to pick her apart and tell me her weaknesses.  Usually parents want you to tell them all the good stuff! 

Only down side is that Ayden Jane woke up this morning with a stuffy nose.  Please say a few prayers that we can kick it quickly and will not head down the dreaded sinus infection path! 

Tuesday, August 27, 2013

So Excited


Ayden Jane is making a chain to keep up with all the people that are supporting her.  She is so excited for each and every link.  We put the names of those that are supporting her on them and she wants to know who they are and why they think she is so awesome.  
 
 
Thank you to all who are cheering her on.  It has been so much fun to watch her excitement!!
 

Friday, August 23, 2013

Decisions Decisions

There is so much positive going on the Prader Willi Syndrome community.  There is phenomenal research going supported by parents and loved ones of those with PWS.  There are new ideas coming along all the time.  There are support groups for those who need help with every thing from and IEP's to insurance to a place to scream and be heard to just sharing of ideas as parents.  All great stuff.

As the parent of an amazing child with Prader Will Syndrome I can say I love all the hope that I can see, even if it sometimes seem a little to far in the distance for my liking.

Here is the challenge.  With so much information and varying opinions and ideas, how do you sort through it all and decide the path you want to take?  Which supplements?  How much of the supplement?  Do I count calories and monitor food intake that way?  Do I follow a low carb diet?  Is low carb enough or should I go all out Ketogenic?  Should we eat on a schedule?  What if she is not hungry at the time the schedule says it is time to eat, still feed her?

I guess the question is how do you balance doing the most you can for your child and yet, not lose the time with them just being mom and kid.  You know, just typical, non analyzing, no playing with a therapy in the back of your mind, silly, pointless fun.

Oh yea!  Balance... some days it eludes me.

Thursday, August 22, 2013

So Far So Good

We have two days of Kindergarten under our belt.  Woo Hoo!  It has been very entertaining to see Ayden Jane's response each day.  She is obviously a bit over done when she gets through those doors.  She craves a deep hug and doesn't say much at first.  The best strategy has been to talk about something old and familiar and she starts chatting away!

You would think that she would then be exhausted and hit the hay early.  Nope.  The first day she and I ended up playing wrestle mania and chasing all around the house like crazy people for 45 minutes!  She did dose off a bit but only to then return to action and hit the beach and the pool with Gary.  It was actually hard to get her to bed!

Day two she came out quiet, but it didn't last long.  She doesn't really want to talk about school, but she says she likes it and has informed me that she will not be dismissing early for PT once a week!  We walk home from school (3/4 mile) and it seems to help her relax.  At home she had a snack and watched a bit of well earned TV.  Then it hit.  Crazy energy time.  She helped with some work around the house and played with the dogs.  Then it was back off to the beach and pool!  No nap at all and when she got back from the pool at 8 she was WOUND up and hysterical.  Finally in bed by 9 and she will be back at it at 6:30 tomorrow morning.  Whew!

It is fun to see Noah in her.  He was my one that had to deprogram from school for a few minutes and then run hard to get the school day out of his system.  Home work or anything seated and requiring concentration HAD to wait.  No homework right afterschool for him.  So far it looks like Ayden Jane is going to follow suit.  Only problem with that is Noah could run with the neighbor boys and get out all his pent up energy.  Ayden Jane pretty much has to play with ME.  Guess we will find some fun things to do and enjoy being active!