Spring Break 2016 - Part 1

Wow. What a week we have had. Mckenna, Ayden Jane and I left Pawleys last Friday in search of adventure for spring break. We covered a lot of miles, enjoyed the company of friends along the way and had a grand time.

First up was a quick visit to get a glimpse of a sweet baby boy. It was brief but a very important part of our mission. Next stop was Indianapolis to visit with the amazing Walker clan!

We piled in on them for Easter fun. Egg hunting, a trip to the zoo - what more could we want? 

Ayden Jane loves knowing other families who have kids with PWS and eat like she does. She has a heart for the ones younger than her and asks often about how they are doing. So fun when we get to visit and she sees for herself the amazing things kids like E are doing. It is also a treat to just do life for a day or two with families who totally get the quirks life with PWS throw at you. Types of food, the need to eat when it's time, reminding to drink, even those darn shots at night. Talk of supplements and doctors and new possibilities on the horizon is good for the soul.

It was a fabulous way to start of an amazing week with my two awesome roadtripping partners.

Sweet Spot

Ayden Jane is just on such a roll lately. If you are reading this and you have a child with PWS or another developmental disorder you likely know what I mean when I say she is just in the sweet spot right now. If you don't, I'll do my best to describe what I mean.

With Ayden Jane there is a delicate balance where if I can get her food ratios just right, her food amounts just right, the right amount of exercise, the right amount of sensory input, the right amount of supplements, the right amount of rest.... She can fly through days without a care in the world.

Right now is one of those times. I tweaked her supplements a bit and I think the time change has also helped for some unknown reason. The result, she has been so active with a steady stream of energy and not worrying about food. We have had meals as far off from her general typical meal time as 2 hours and not even batted an eye. She has turned down snack twice and chosen to put off meals until later... then not even bothered. Her brain is sharp. Only negative at this point is I am exhausted at the end of her day.

She had a wonderful day yesterday at a friends birthday party. It was a big, crowded, fun place with lots of things to touch and do. She played laser tag, climbed on the ropes course, flipped upside down on a crazy bike and generally had a blast for 4 hours. After we came home she had a coconut square and hit the neighborhood. I had to run a few errands and did not get back until after 7. She had just come in and started supper. Then she wanted to walk the dogs!!! Yep, a mile and a half later and 1,000,000 words later we were back and she got ready for bed. Whew.

If I could write up a formula for exactly the amounts of each of theses things she needs to make her stay this way I would but that is part of why this kid is challenging. Her needs change as she grows. The needs change and you can't quite put your finger on it. At first it just seems like she's tired, or allergies are bothering her, or it was just a long week or.... Eventually, you decide it is not temporary and then have to figure out what is the cause and how to address it. I'm not saying the difference between functioning and not functioning. I mean the difference between doing good and doing great. It is subtle and I tend to obsess and drive myself crazy. Sometimes I am nuts and I need to leave well enough alone. Other times, like this one, my suspicions are totally spot on and we almost get a break from PWS. I allow myself to relax for a while and Ayden Jane enjoys a stretch where things come easier.

Long live the sweet spot.

Eye Check-up

Yesterday we headed down to Storm Eye Clinic for our 6 month check on Ayden Jane's eyes. There was good news, but not exactly the news Ayden Jane was hoping for.

The good news is that the doctor was very pleased with improvements. Ayden Jane's right eye has some strabismus and turns in toward her nose at times. We have noticed this happening much less when she does not have her glasses on and he confirmed that she is maintaining good straight eyes when not doing up close work. Another improvement was in her depth perception. She has some now!

So, all this and some other things I didn't totally grasp, result in her being able to play with her glasses off more often when she is not using her up close vision. Wonderful news as we head into the summer beach and pool season. Also, just nice to know that it really is okay for her to run with the neighborhood pack, jump on the trampoline and play soccer without her glasses. It's a wonderful thing because her glasses have been left at home during these sort of things a lot lately and I was wondering...

Ayden Jane was hoping that she would get a reduction in the lens prescription. Didn't happen. I'm not sure if it is even in the realm of possibility at this point, but Ayden Jane thinks she can make it happen.

To me, it shows more than just what her eyes are doing. I remember back when she was tiny and all through early intervention. I sort of had the feeling like there was a window of opportunity for her neurological system to fully develop and that if we did not 'catch up' during that time, then it was too late. Spurts like these show me that although as a child ages there is a slowing of some of that sort of growth, it is not an abrupt stop. Ayden Jane's eyes made a significant jump at age 8. That is much older than I expected to continue seeing these sorts of developmental spurts. It seemed to come in conjunction with her improved handwriting and some other minor things. Hooray for neuron growing!

Heart

Well, it's nearly two weeks into March already! It must be soccer season. Nothing else makes time fly quite like this time of the year.

Ayden Jane is handling both swim team and soccer right now. It feels over booked, but a big break is coming, so we should be good.

Watching Ayden Jane at both swim team and soccer is such an experience in mixed emotions. On one hand, she struggles....  On the other hand, at times she surprises me with how well she does something. So one minute I am stressed out by her seeming to not even realize a soccer game is going on, then the next minute I am so proud of a great run down the field or a time she stepped up and took the ball.

I guess the worry I have for her in the sports arena is more about me than it is about Ayden Jane. I mean, I was athletic, and the thought of not being able to be good enough to truly feel like a part of a team just seems like a terrible thing. In the grand scheme of life I do realize that it's not really that important. and I'm sure there are lots of other ways to be happy. It's just that this is the avenue I know best.

As I watched Ayden Jane this week in her activities I think what struck me more than anything is her heart. That may sound strange. We use the term, "she has heart" to mean somebody works hard and gives their all. We use the term, "she has a big heart" to mean someone cares openly for others and is generous. Sometimes, people use the term, "she has a good heart" to mean that someone is kind and sees the best in others.

I think all of these 'hearts' apply to Ayden Jane. I watch her work ethic and I know that she truly does play, learn, exercise ... live, with heart. She gives everything her best effort. I know that she has a big heart toward her friends and wants to help them and is generous with whatever she has to give or share. I see genuine kindness as she complements her friends on their skills or encourages them as they are learning something new. There is no envy in her over things coming easier or the foods others can eat or just the fact that they have all their DNA and very few doctors appointments.

We talk often of her friends with PWS and the struggles they face. Ayden Jane cares deeply for these kids. Like she feels a special connection to them. Her biggest hope is that they will be able to enjoy life just like she has. She genuinely feels like she has it wonderful because she is able to do all the things regular kids her age do and she knows that lots of kids with PWS just can't keep up.

So, our kid with the rare genetic disorder has a confidence about her that is uncanny. She truly feels blessed by all the things she can do and the thought does not really cross her mind to complain about all the extra work she has to put in just to keep up. Yep, she can teach us all a thing or two.

Rare Disease Day

A rare disease is defined statistically as one that effects less than 200,000 across the United States. Before I had Ayden Jane I had 3 healthy babies with all their chromosomes present and accounted for. I took that for granted. After Ayden Jane's birth and the 8 month search to discover the cause of her struggles I was introduced to the multitude of things that can happen... that do happen. There are so many...

When I say there are so many, I have read statistics that place the number of rare disorders at approximately 7000. Think about that. 7000 ways for things to develop differently. Back when Ayden Jane's genes revealed the source of her troubles, I would have said, "develop wrong, or improperly."

So why the change? Am I just being politically correct now that I am a bit sensitive to this whole genetic sydnrome, special needs, medically complicated, developmentally delayed club we were cast into? Okay, so maybe that's a part of it.

The larger part, however, is that along with being rare genetically, Ayden Jane is rare in many amazing ways. There is a strength and joy and determination and genuine caring that she possesses. There is a boldness of her spirit. She has an incredible ability to love and forgive. She sees the good in people no matter what they see (or don't see) in her. She has a depth to her that is genuine and rare.

I would take away the struggle is a second if I could. Why else would I fund raise to do just that! At the same time I am oddly thankful for the incredible little girl all those struggles have created.

Mostly, as I reflect on rare diseases today, I find I want to know the stories of the people who live with these syndromes. I am, admittedly, a science junkie and I find the science behind all of these fascinating. However, the strength within those who learn to do life differently is more than fascinating. Look for these kids/people. Slow down, take the time to get to know them and allow yourself to be blessed.

Ramblings of a Mom

It is a common thing that the change from not having any children to a family with kids leaves moms with a bit of an identity crisis. Not that you don't have enough 'job' descriptions... I mean now not only are you wife and employee and friend and music/sports or whatever enthusiast, but you add mom.

The struggle, sometimes, comes in how mom is not really something that is just added to the list. The mom title tends to push some of those other things out of the way and change how we see some of the other things. The struggle is real. Sometimes it is a tough struggle. Sometimes it is a relief struggle. But what is certain, it is a big change in more ways than you even imagined while waiting for the little one.

I can honestly say that for Gary and I (yes, Dad's are included) the start of a family was a smooth transition. Maybe it was because Kayla was so easy. Maybe it was because we were just at the right point for our family to begin. Maybe it was so long ago I just don't remember the hard stuff :)

No matter, with each of our first 3 the transition to the addition to our family was a wonderful one. In no time at all we could not imagine our lives any different way. Sure there were some financial worries and some shifting around of responsibilities but I was able to find a great balance between mom life and work life and social life.

Enter Ayden Jane. With this child, there was much more than a bump in the road financially. There was much more than a small redistribution of responsibilities and division of time. There was an enormous amount of stress and worry where excitement and joy should have been. There were serious conversations about how to move our little family forward. There were many things that were tossed aside to make way for the time commitment of Ayden Jane.

This was not the road I intended to travel. Heck, I didn't really even know a thing about this road! Now I am here, several years down the road with Ayden Jane doing well. On the verge of attempting to go back to work - needing to go back to work both financially and mentally. I have an entire community of friends with a unique bond over our children even though most I have never met. I have much fewer bonds with local friends as I have not taken time to foster those friendships. 

On one hand I am so very, very ready to shift away from 'doctortherapistmom' and back toward working outside the home mom. On the other hand, part of me is not sure I remember how! It's an odd place. Much of what I spend my time on is still reading medical journals and new research and books on sensory processing and supplements and nutrition and.... I'm almost addicted. lol

On the other hand I want to be involved in nearly anything that has nothing to do with PWS. I want to remember what I used to read about. I want to be more carefree. I know that I will never be able to go back to the person I was before Ayden Jane and that is just fine by me. I have learned so much that is good and I want to take that with me. I guess, in the end, maybe I am just finally at a point where I can breathe and relax, I just don't remember quite how!

Local Endo

This week Ayden Jane and I made our semi annual trip to see her local endocrinologist, Dr. Clark. She is pretty awesome. We had already done blood draws and knew levels looked good so that was out of the way.

She did the quick back check and all looked well.

We did height and weight. I was sort of dreading that because AJ is still sporting 2 of the 5 pounds she gained while I was away. I have no worries about it as she is slowly but steadily shedding the weight, but I knew that we would be plotting along the growth charts... The good surprise is that she is still tracking right along!

The shocking surprise is they measured her at 54.9 inches!! She is nearly 4'11". That just blows my mind.

Dr. Clark checked her bone age with a hand x-ray. We do this annually. Back when she was so sick for the winter just after she turned 4 her bone age accelerated. At one point she was nearly 2 years advanced which is not good. Basically, it just means that she would stop growing earlier than typical and therefore lose some height in the end. Since that time, her bone age has been slowly correcting. She is now a bit under a year advanced for bone age which falls within typical.

Dr. Clark used bone age, current height... to predict her final height. She told Ayden Jane that she would be 5'6", about the same as me. Ayden Jane told her, "oh no. I am going to be as tall as my sister Kayla." I think she has taken it as a challenge.

Ayden Jane was great. She chatted and showed off her improved writing skills. It is so fun to watch her show just how typical she is to Drs./people who have experienced a very different version of the syndrome. They just love listening to her and watching her and hearing about how great she is doing in school.

We are very lucky to have such a great Dr. not too far away. She is interested in Ayden Jane and learning from her and from Dr. Miller and using that to help other patients. Yep, hooray for smart, humble, compasionate and open minded Drs.