Thursday, October 29, 2015

Shoe Tying

Tying your own shoes is a sort of rite of passage. It is something most kids can do in Kindergarten or first grade and it has been driving Ayden Jane crazy that she could not conquer this one.

She has worked long and hard in OT. She says they do picture cards that she has to lay them out in sequence and then follow. She was finally able to do it in OT with the nice fat easy to use laces that were not attached to her foot. She was so excited and was sure she could now tie any shoe, anywhere, any time. Not so much. It was a long morning before school the day after she finally was able to tie in OT. She had herself set up to believe she would be tying her own shoe for school then next morning. After and lots of tears she finally moved on ... sort of. Enough to let me tie them and kick her out of the car to school.

Finally, on Sunday, the day after she ran with Dr. Miller she sat down and put on her own shoes and tied them!!! We were getting ready to walk the dogs and she just did it. I wasn't even in the room - easier on my nerves that way. It wasn't a quick process but she did it. Our OT lives in the neighborhood so we took the dogs and stopped to knock on her door on the way by. Ayden Jane was so proud.

Now, every morning before school she takes care of her socks and shoes totally on her own. To some that may sound pretty boring, but for us it's like having won the lottery!! One skill at a time, she will do it all. 

Wednesday, October 28, 2015

Fast and Furious

Fast and furious describes life these days.

First of all just in Ayden Jane's schedule. She leaves for school about 7:20 or so and gets home about 2:45. Early is actually good for her so we are good there. She has lots of after school activities - Monday: swim team, Tuesday: horses, Wednesday: swim team, Thursday: soccer, Friday: as much out door play as we can find, Saturday: soccer game, Sunday: church and evening church club. We slip in long dog walks, trampoline and other fun with the neighborhood kids and board games with Dad whenever we can.

Then there is homework. Ayden Jane is totally keeping up in second grade but I will say homework is not taken lightly. Spelling she can whip through, other than she needs to take some time to be sure her handwriting stays legible. Reading she loves to do because her teacher set her up on a computer program which allows her to read leveled books and moves her up gradually in the system they use. (Fountas and Pinnell)  She is so goal oriented it is perfect for her and she does it 100 percent independent - usually at the table while I make supper. Lastly, math. She finds the math most challenging. It is interesting to work with her on it because sometimes she just gets it and she gets so tickled and just grins from ear to ear. Other times I'd have better luck explaining it to the dog. Usually, just about the time I think maybe she is never going to get it, the light goes on and she flies through the rest of it.

I had her teacher conference just before we headed out for the race. One concern is getting focused and completing tasks in a shorter time frame. Mostly this applies to math. I think Ayden Jane is a little unsure in the math so she is a master of finding other pressing issues - like the need to have the perfect tip on her pencil or to throw something away.... Yep. Pure procrastination. The other thing is that her teacher notices it can be hard for Ayden Jane to focus during a large group instruction. I am sure this is that part of her that struggles to screen out all that is going on. It's the same part that was so overwhelming when she was little that she never spoke and sort of shut down in new places. Like everything in the room is really loud and really bright and she has a hard time making unimportant things fade into the background and focus on the important things.

Her teacher is great and will help her work through these things. Also, I talked to Dr. Miller about the attention piece as I know lots of kids with PWS need help in this area. There are a few medications that seem to have good results. We are definitely not there yet, but it is nice to know there are options as she gets older if the distract-ability gets in the way of her learning.

Lastly, my biggest hope is that the Oxytocin study Dr. Miller wants to do gets off the ground. The things that the results of the phase 1 study indicate as I understand them, seem like they would make all of this that Ayden Jane works and has worked so very hard to gain come easier. It could come for her, like it comes for typical children. Her playing field could be leveled and she could not always be running up hill.

Monday, October 26, 2015

So. Much. Fun

Getting ready for the big race! Kayla and Ayden Jane at the start!  Kayla tried to get Ayden Jane all fired up and showing her muscles... Couldn't get Ayden Jane stop smiling.

 This was a little pre race chat. I wish I could remember what they were talking about. Obviously Kayla and Ali thought it was pretty funny.

Out on the course. I think Ayden Jane could talk all day!

Out on the course. 10 obstacles of various shapes and sizes. So that means Ayden Jane covered 3 miles plus 10 obstacles and she loved every minute of it. Not saying we ran all of it but I can say that she ran most of the first 2 miles. The third mile the hills definitely were winning.


And the whole wet, muddy crew! Such a fun day for all.

I wish I had a picture of Dr. Miller diving down the slide right beside Ayden Jane. They'd look like super heroes flying off together.

Saturday, October 10, 2015

Out for a Week

This time last week we were hunkered down and the rains were falling. We ended up out of school the entire week this week as parts of our county are still under water. Basically, the falling rain and the high tides caused the first wave of flooding. Pretty much everywhere saw double digit rain totals and some places even saw upwards of 2 feet of rain. Once the original flooding from the rain as it fell and the high tides caused by Joaquin passing by, then the rivers began to rise. All that water from Columbia area that was hit hard with flash flooding made it's way into the rivers that wind through this county on the way to the Atlantic. The aerial photos and videos are incredible. Main roads turned into rivers, entire towns under water, other communities completely cut off from surrounding areas by water.

It was strange here at the beach side of the county. The sun was out and the weather was beautiful. Things dried up and we even had Ayden Jane's first fall soccer game. In my mind, though were friends whose homes are now filled or even submerged in rivers that will take another week to return to their banks. People who lost everything. Roads that are entirely impassable. Lives completely disrupted.

So what did we do with our week? We played hard. We walked, Gary and Ayden Jane hit the ocean - for long swims. We ran a tiny bit. Kayla went on a bike ride adventure with AJ to the local rec center and Ayden Jane worked on climbing the rock wall. The swam some more. The neighborhood pack came and the kids bounced on the trampoline. They rode bikes and scooters and were a happy pack of kids roaming the neighborhood like days of old.

We also played the board game trouble. It was hysterical to watch Ayden Jane's brain work in over drive on that one. She does have a magic touch with the dice, though, and beat us all!

All in all, we made it a great week. Gary is off to Wheaton to visit Noah next week and then soon he will be swamped with work. It was great that he and Ayden Jane got to spend a lot of time together. Some interviews for me coming up for some part time work and the holiday season will be upon us. Yikes!!

Thursday, October 8, 2015


This is one of those posts that is a little tough to write. Not so much because it is complicated but because there are a lot of conflicting emotions and opinions that are running through my mind as I try to put the words on paper.

It starts with the simple fact that Ayden Jane is doing great. Because of that fact there are parents who want to know our 'secret'. There are parents who have told me, "be thankful things are good now but just wait." I have had her genetic testing questioned.... These and more like them are easy to answer. Our secret? I am doing everything I can to tell people what we are doing with Ayden Jane and I am happy to do so. More and more is being learned all the time and I am hoping and praying for the kids younger than her - that they will do even better. Be thankful and 'just wait'? I am always thankful that Ayden Jane is a part of our lives and the older she gets the less concerned I am about 'just wait'. (btw, that one did get under my skin for a long while. What a cruel thing to say to a parent) Her genetic testing? Haha... yep, and thanks for the compliment.

The only comment that I get that still REALLY bothers me is, "don't give parents of new diagnosis false hope." At first I worried that maybe they knew something I didn't. That maybe I was somehow lying or setting these new parents up for more heartache. That I was doing something wrong. I mean, for the first year or so after diagnosis I was reading and learning on my own and making decisions on supplements and diet by how Ayden Jane responded. It just made so much sense and AJ was thriving, but in reality I was 'making it up as I went'. What if I was wrong?

I decided after a while that some of the confusion was in the definition of hope. I would say Ayden Jane offers wonderful hope. She is not a guarantee, but definitely hope.

For those who have been blessed to never experience giving birth to a child who was diagnosed with a genetic syndrome, let me explain what happens at diagnosis. A doctor calls you or brings you in for an appointment and explains to you that your beautiful child - the one you carried for 9 months, have dreamed about what talents they will have, who they will look like, whether they will be shy or outgoing... is missing some genetics. Then he/she begins to describe who and what your child will become, generally in terms of all the ways your precious gift will be limited. As a parent you simultaneously have all your dreams thrown out and replaced with a fear like you have never known.

We received the call. We sat in the office and heard all that the textbooks say. I took to the internet and read so many things (google at it's worst). What I remember most about those first weeks was looking at my 8 month old and trying to make sense of it all. I wanted to find someone, somewhere that could show me there was even a chance that it would all be okay. Back in that day I found a yahoo group of parents who did not accept that there was nothing to do but lock up and hang on. I read and learned and slowly dared to hope.

So I write about and share our crazy life with Ayden Jane and all that we have done because I truly believe Ayden Jane offers true hope. Just like with the birth of any child, there are no guarantees that Johnny is going to grow up to be president but as parents we are free to imagine he might. What the diagnosis of Prader Willi Syndrome tries to take away, Ayden Jane and the growing host of other children with PWS that are defying the text books are giving back. - Hope.

There will be hard days, you will learn things you never wanted to, you will find a new family you never asked for, your heart will burst with pride as your child learns hard fought skills - these are the guarantees. So hang on to the hope of new research, amazing families with happy, incredible kids and allow yourself to dream big for your child. I look forward to hearing about the amazing lives they will live and the joy they will bring.

Tuesday, October 6, 2015

Little Things Big Lessons

With all the crazy inside time and water and lack of schedule... Ayden Jane was a little nuts this morning. She needed to get out and run around and swim and play until she dropped. It just calms her. Calms her physically and calms her mentally. Pretty sure that's true for all of us but she can just bring it to a whole new level.

So, she and I walked our mile and half. It didn't really even put a dent in her energy... Gary was my hero and took her to the ocean. They swam and were crashed by waves and played with the dogs for an hour. Ayden Jane's smile is bigger, eyes brighter and entire disposition wonderful.

After all this she headed down to the neighbors to play. Shortly there after I got a text that read, "KG gave Ayden Jane a piece of candy. Should I be worried?" My response was no, but please send AJ home so I can give her an earful...

Ayden Jane came through the door and I let her get out her side of the story. Her friend told her that it was made of apple. We all know that Ayden Jane can not be fooled that easily unless she wants to be so I went with the question - Did you know what you were eating? She answered no, not really. I made it very clear that if she did not know what it was then she obviously did not know if it was safe to eat so she made the wrong choice. Next question was, did you need to eat anything at all? Her answer was no, she wasn't even hungry-just curious. I added that I know it is hard to always make the right choices but if she wants the freedom to go her friends than I have to be able to trust she will make the hard choices. I made it very clear that if she can't do so she will be staying home for a good long while until I feel like she is able to make good choices. Losing independence is a fate worse than death for my independent little soul.

She agreed that if she does not know what something is she will ask an adult or text mom. 

Next we talked about how these sorts of situations will come up and that I know her friends are not trying to hurt her, just being nice and sharing with her. She said sometimes she just wants to take something because she doesn't want to make a deal of it. We talked about things she can say in response. Plain old no thanks...  or I don't know for sure what's in that so I can't eat it, lets go play. She liked that.

In the end, one small piece of apple candy is not going make a bit of difference so hopefully we have learned a great lesson in a safe way.

Monday, October 5, 2015


Whew. So. Much. Rain.

Ayden Jane has been pretty good. We have been stuck inside for weeks days. It did feel like weeks though. I hear the sun will be out at least for a few minutes tomorrow. I will be so glad to see it.

Things are bad in South Carolina as a whole. The amount of rain was unbelievable. Our yard is quite wet and puddle filled, but our home is dry and cozy so we feel wonderfully blessed. We do know many others, however, who are not dry and whose home and/or businesses have taken a hard hit.

Roads are a big concern. Bridges in particular... Gary made it to work fine on Saturday afternoon but went with extra clothes just in case. Well, getting home on Sunday was not possible. In fact, I saw video later that day of boats patrolling up and down the highway. Monday he made it home but the bridge to get back across the Awendaw creek was closed off and on depending on the tides and other features. He could not get back to work because even the 2 other ways around have washed out bridges... Luckily, they had people to cover and he is not due back in until the end of the week.

Lots of people have also been stuck out of town as even major interstates have been closed. At one point 70 miles of I95 was shut down. Columbia is the capital and most all major roads go through the town which was hit with so much more water than it could handle the infrastructure is a mess.

Ayden Jane asks about the flooding and if people are okay. She wants to know if we can help them. Not sure what we will do but we will have to find some way to help clean up or donate or something.

Looking forward to getting back to school hopefully Wednesday after being stuck inside for the most part Friday - Monday and out of school Tuesday as well. We need to get back to some serious exercise and I think it starts tomorrow!

Thursday, October 1, 2015

8 Will be Great

Just pictures of the transformation...

On oxygen, monitors, non responsive ... 

Just before diagnosis at 8 months
oh, the rolls

On my new diet and coming to life! 10 months

Eating well, learning tons and getting mobile! 13 months

Constant motion, always on a mission - 2 years old.

Vacation to Texas, loads of personality - 3 yrs old

Still on vacation and showing off my love of all things wild.

4 year old preschool!

First day of Kindergarten at "Big School"

Ringing in the New Year 2015 With my Family

Ready to rock second grade!