Thursday, October 28, 2010

Awesome Sister and Upper Body Work

So, although this blog is mainly about Ayden Jane, she obviously has 3 siblings. I just have to pause to brag on what a great kid our oldest, Kayla is. It has been an incredible week for her. She has been officially accepted to Clemson (not sure if that is where she will go) and offered scholarship funds already for her academic record. She was selected for the all state volleyball team. Her high school team is heading to round 3 in the play offs. Most amazing though, is the hardworking humble spirit she has. She works part time and has decided to use her money to return to Guatemala this Christmas to brighten the lives of the girls at the Oasis, a home for abused and neglected girls there. She also hopes to visit with Oscar, the child we sponsor through Kids Alive. It will be hard on Mom to have her gone for Christmas, but I am proud of her that her choice is for Christmas to be about brightening the lives of others, not about what she will receive.

Now on to Ayden Jane news. We had a genetics appointment yesterday. I still go to see Dr. Pai because he is interested in learning. He asks me what new research I have heard about, conferences I have gone to... He really wants to know and takes notes. Mostly, he just follows Ayden Jane and really does not have much to offer us, but I love that a hospital like MUSC has a guy who at least is interested in learning.

As for Ayden Jane's new 'needs', yesterday we hit the playground near out house. I guessed that bars would be good. Wow, that is exactly what she wanted! She loved climbing the ladders and she can just reach the first monkey bar on her own now. Of course, she shoves me away if I touch her while she gets her grip and lets her feet fly. She like to swing on them and have me catch her as she falls. Then I hold her feet and she goes hand over hand across them like a pro. She is definitely craving upper body work. Ideas anyone???

Tuesday, October 26, 2010

Here We Go Again!!!

We had PT today and I discovered that although I hate to admit it, I am still clueless about many things Sensory Integration wise. I know all the old clues to the sensory integration needs Ayden Jane has had in the past. I could just 'see it'. Apparently, sometimes the needs change a little and look a little different.

Ayden Jane has asked me lately to 'play sand' (she has moon sand we pull out once in a while) and play doh. She has asked to go swimming. I did not think much of these. She has been determined to put heavy things on the counter and put groceries on the belt... She has been hanging on every bar she can find. She has been putting things down or stacking things a bit to hard. Her behavior has been frustrating. Her attention span has been lacking and her patience has disappeared (and mine has sometimes gone with it). None of these alone made me think too much other than she is 3 so.... I had a little bit of a wake up call when I gave her a different pillow case last night and she got upset and declared it itchy.

Then came PT today. Jen had a plan and brought lots of fun toys to motivate. I fed AJ and bounced on the trampoline with her to be sure she was ready to go. Ayden Jane could not focus on ANYTHING. She wanted to jump from one thing to the next. She went so fast in the activities Jen was doing she had zero quality. Jen worked some magic which included wrapping her in a blanket and doing some things on the ball. (I call her 'baby whisperer') She slowed down enough to get in some good work, but it was very apparent that a new sensory spurt was under way.

Jen said that she felt the need has changed a bit and I need to be aware that it may take different things to meet the new needs. She described it something like this. In the past the deep input need was central and core related. That is where the connections were going wild. She thinks that the needs now are a bit more distal. Not to say that means finger tips or anything, but shoulders girdle and arms and hands and legs (probably why she keeps putting stickers on her legs and goes into jumping fits) and feet. So, Ayden Jane has been asking for things to meet the need. The moon sand and play doh and hanging and lifting heavy things up high. I just did not understand her new sensory language. So we are now looking to do things that require pulling and pushing and strong hand work and resistance. We are crab walking and bear walking and wheel barrow walking on the trampoline. We are throwing heavy balls... It is just the beginning so I will let you know how it goes. As for now? She just went to bed nakey because every article in the house was too itchy! Neurons connect!

Thursday, October 21, 2010


"You are so blessed that Ayden Jane is doing so well." I hear this quote a LOT. Yes, it is wonderful and yes I am thrilled with how great AJ is doing. I don't want to sell any of that short, but I have had a constant thought bouncing around in my head.

Do Ayden Jane's abilities to talk and run and jump and be, well, 'typical' 3 mean that I am blessed? Or maybe I should ask, would I be any less blessed if Ayden Jane were not talking and running and jumping? What is the meaning of blessed? Is it when things turn out well?

Here is what has to say on the matter.

1. consecrated; sacred; holy; sanctified:
2. worthy of adoration, reverence, or worship
3. divinely or supremely favored; fortunate
4. blissfully happy or contented
5. bringing happiness and thankfulness

Let's see. I am pretty sure option 1 does not apply! Or maybe it does in the sense that we are all created as such in God's eyes, but our skills certainly have nothing to do with it. Option 2 makes me uncomfortable as sometimes I feel like there is a bit of feeling like I have done something special that makes all of this happen. Now, I am all for Ayden Jane's success causing others to see God as worthy of adoration, reverence and worship. Option 3? Hmmm. Quite the conflict. I do feel fortunate that AJ is so capable, but at the same time is it fortunate that she has PWS? How does that make us supremely favored? Because we have less struggle with a genetic disorder? Option 4. I will say that there is a part of Ayden Jane that is blissfully happy and content. She has also made all of us learn a lot about contentment and what really matters. This has definitely led to some blissfully happy moments. Finally, option 5. Wow. Bringing happiness and thankfulness. Obviously, we are blessed.

So, are we "blessed that Ayden Jane is doing so well?" Yes, but not so much because of what she is doing or not doing, but because she is a blessing. Just like for all of our kids. They are not blessings dependent upon what they do or do not do well. We are divinely favored to be the parents of holy creations of a God who is worthy of adoration and we are thankful for the happiness they bring. Yep. We are truly blessed!

Wednesday, October 20, 2010

Pumpkin Patch

Today Ayden Jane went to the pumpkin patch with her class at school. There was a little show with songs and silliness first, then out to see the pumpkins. Ayden Jane was great. I was amazed that she was actually less overwhelmed than some of the other kids in her class. She participated, sat on her own and listened great. So fun to see her with other kids her age and know that she totally fits right in. Here a couple of cute pictures.

Watching the show carefully:

Investigating the pumpkins:

So strong!

Tuesday, October 19, 2010


So I have continued to do some running. I have always run alone with my own thoughts. It has been my stress reliever, my prayer time, my solitude, my me time.... pretty much as long as I can remember. Last year I decided to run the Myrtle Beach Marathon as a fund raiser for The Foundation for Prader Willi Research. It was a huge leap because although I have always loved to run, I don't think I ever had gone more than 5 or 6 miles at a time. I was very into it. I loved the training. I think I needed the training. Well, it was cancelled due to snow and I was definitely disappointed. I just needed a finish line. I was determined to go for it again this year but something is different now. I have been doing some running and the training physically is easier, but the mental part/heart has not been in it. I was thinking about it as I was running today. I came to realize that I am just in such a different place than I was this time last year. I don't NEED to run anymore. AJ is doing great. The other 3 kids are doing awesome. Gary is starting a new job which will help us tremendously financially. I am crazy busy but the stress level has definitely dropped. Sure, we still work hard with Ayden Jane, we are busy trying to help Kayla choose a college and pay for it, we spend our weekends on soccer fields, our sofa is torn tattered and broken and there are many similar things around the house that are way past time to replace, Gary drives a van with 260,000 miles on it that we can hear 2 blocks away which is dying a slow painful death, we have more practices and games than family meal times...

BUT we are healing. I sleep at night without worrying. Mckenna is so much less fearful. Noah has grown into a fine young man, is doing great in school and making great choices, Kayla is completing a tremendous 4 years of high school as a student, athlete and friend and has a fantastic future on the horizon. Ayden Jane is, well, your basic 3 year old. A feat I was afraid to dream of when she was tiny. Gary is working at a new job which he loves and is so happy and relaxed. Our house is filled with laughter and we enjoy our crazy family. We like to hang out together and we cheer each other on. There is nothing better as a mom than to watch all your kids truly enjoy one another, support one another... love one another.

So, what about the running? I am ready. I want to do it. Yep. I WANT to do it. It is okay to run because I just want to, not because I need to. We will see how it goes since I signed up a long time ago for a half marathon this coming Sunday. YIKES! It will be okay because now my heart is in it. I will run it as a celebration. I will count my blessing for 13 miles. Wish me luck!

Sunday, October 17, 2010

Bug Spray and Ninjas

These are just random photos Mckenna took trying to get Ayden Jane to make silly faces. There is really no point other than they just show the moments of our life. This was yesterday afternoon after Mckenna's soccer game.

I think this one is almost Halloween worthy!

Speaking of Halloween, it has never been my favorite holiday. Okay, maybe as a kid it was fun to get candy and run around with my friends, but that's about it. Mckenna has a great costume idea at least this year! Her friend decided he would be a mosquito so Mckenna is going as bug spray. Noah is in charge of costuming and is determined she will be capable of spraying. It is fun to watch their creative little brains go.

So what will Ayden Jane be? Kayla thinks she should go as a Ninja. I know that sounds crazy, but that is what we call her. There is something about her that is sooooo quiet when she is up to something. Today, for example, she wanted to play in the car I had just cleaned out. I left the back open so she came inside and got her chair from her little table and took it out... Now AJ is getting bigger, but for her to carry even a small wooden chair outside should be noticeable. Nope. She will slip away while we are all in the living room and it is like we have to send out the search party. Usually she is just playing somewhere or on a small mission like changing her clothes... Occasionally, we find her in strange places like in the shower. Yep, water running, clothes on... but washing something very important. She keeps our radar on high alert!

Friday, October 15, 2010


We, well mostly Jen, decided that although Ayden Jane is very functional getting around, she needed a bit of support in her shoes. Things like getting bigger and therefore heavier and the ability to jump from higher and carry heavy things made the final decision. We went to see Mr. Alan and he made molds for her custom afo's. He did a great job of explaining what the inserts will do. It sounded a little odd that little things you put in the shoes could do so much. Apparently they not only support her foot, but they also cue some of the little lazy muscles that might be sort of hiding out other wise. Sort of like the use it or lose it concept. The afo's will keep her feet in the proper position so she will use all the muscles as intended. It sounded a bit odd, but I am a believer in what Jen says and Jen says Mr. Alan knows what he is doing so...

The result? Ayden Jane jumped her way out to the car. In the middle of the grocery store later that day, AJ stopped and said, "Mom, what in my shoes? My feet funny." She followed that with a round of jumping and jumping and jumping... seriously, like 20 plus. She had a big grin and said, "they jump high."

I have to admit she has bumped into her fair share of walls today as well, but the cute little run jump thing she does which is supposed to be skipping is about the cutest thing.

I am sure some of the jumping at random times comes from the trampoline. Ayden Jane has become amazing on it. At first, she did not like when we jumped much and she fell fairly often. Now she manages to stay on her feet even when I jump on it with her. The other new thing is before, when she tried to sit while we bounced, she just couldn't hold herself in a sitting position very well so she would yell for us to stop bouncing. Now she can stay seated upright and thinks it is hilarious. She will also yell, "butt drop" and put her feet out and land in a good sitting position. At first she tried but fell awkwardly backward or sideways. I am guessing it is a combination of improved body awareness and strength.

Tonight at the football game Ayden Jane was enjoying her new shoes. We sat and watched for a bit, but then for the last 20-30 min. (yep, 8:30-9:00 and this kid is still going) Ayden Jane ran up and down the ramp to the bleachers. It is at the far end and has that U shape to it so it is up, turn, up and magic she is way up high. Now you also have to picture the fact that there are groups of wound up kids going up and down as well. These kids are all ages and many are moving FAST playing tag ect.. I stayed at the bottom and watched as she would weave her way through or dodge and be dodged. She was 'taken out' a couple of times but it did not deter her. She would complete the journey up as quickly as she could and then do a little dance at the top, grin at me and head back down.

In the end, all things are working together. She loves her afo's in her shoes and is still getting lots of work on the trampoline in 'nakey piggies'. (bare feet)

Wednesday, October 13, 2010


Now that title may be a bit misleading. No, I am not talking about the why do bad things happen... discussion. Not that I don't still have that one constantly circling in my head as I am sure we all do. I am talking about the 3 year old question to every question, statement, comment.... It has been discovered by one very cute little 3 year old who happens to live here.

I had to laugh tonight as Gary was sharing a snack with Ayden Jane before bedtime. Ayden Jane asked him a simple question and he gave her an honest answer. Then it happened. "Why?" The blessed question of all inquisitive 3 year old's, or is it the cursed question which can never be answered to a 3 year old's satisfaction? I am not sure where Ayden Jane picked it up but I have to say that I am thrilled to be driven crazy in this wonderfully 'typical' way. Gary fell for it hook line and sinker and after several rounds of answers to the question, "why?" he knew he was in this for the long hall.

Tuesday, October 12, 2010

Here Goes

I guess I will go in reverse order in time. That means I start with today. Ayden Jane and I went to visit Dr. Clark. It is about a 2 hour drive so it shoots the day, but Dr. Clark is great. She looked over some labs that had been taken as part of an NIH study. We are a little concerned about Ayden Jane's cholesterol. It is not too high, but with the healthy diet she eats it is hard to understand how it could be elevated at all. I am going to drop one egg yolk from her morning eggs and see what that does. Her IGF 1 level has a bit of room so we are also going to go up to 0.6 gh. Ayden Jane grew like crazy over the past month. It was definitely not my imagination that all her clothes seem to have shrunk. She shot up from the 50th to the 70th percentile in height. That puts her at a bit over 37 5/8 inches and weighing 32 pounds. Those numbers keep her just slightly lean for her height. PERFECT.
We also had horseback riding today. Starting last week Ayden Jane got a new horse to ride. Her name is Zip (although AJ calls her rip). She is much bigger than Mindy was and Ayden Jane LOVES her. I made the mistake of telling her at our appointment this morning that it she would see Zip later... Over and over and over, that is all we talked about for 2 hours home! Anyway, here are some really poor quality pictures to show you how little AJ looks on Zip.

Before we left for endo (remember, reverse time order) we had speech. It was just the second time with her new speech therapist and Ayden Jane loves it. She worked hard and is starting to come up with some sounds I have not heard her make before. She asked for blueberries this evening with supper and instead of the usual 'bu bu bu's' we heard something resembling balooberries. I'd say that's a pretty big jump. Another one is that she is making a sound something like the sh. Up until last week we wore hoos and took hower's. (shoes and showers)
While I was putting in the horse pictures I remembered to check for random pictures taken by Mckenna on my phone. These were taken at Kayla's volleyball tournament.
Say cheese!
Silly face!
This one shows the lovely scar on her chin from the stitches. It doesn't look too great, but as long as she doesn't sit around like this no one ever sees it anyway!
So much more to say, but so many dishes, clothes... to take care of. I will get back on track soon.

Saturday, October 9, 2010

Wow it has been busy lately. One of those weeks where I love having 4 kids, but am thoroughly exhausted from it! Not that next week looks any better! Lots has been happening so I apologize in advance for the scattered ramblings to come...

A couple of things with Ayden Jane. She is definitely wanting to eat more. It is a little scary, but may just be a normal growth spurt... It is just so frustrating that we have to worry about it. I would not really even notice with my other kids! I do know that last spring we wore 2T but bought 3T for summer. This worked great as the 3T's were roomy and easy for Ayden Jane to put on herself. Now? All the 3T shorts are too small for Ayden Jane to get on and off by herself. Last month we went shopping for some school clothes and bought 4Ts. So how do they fit? She can no longer get the 3's on and off herself and the 4's don't even look big! Okay, so that probably makes no sense to read... sorry.

At least I have lots of eyes on Ayden Jane this week which will help me determine if it is good growth and what adjustments to make. We go to endocrinology on Tue., have a well baby check on Thurs. and are fitted with our new orthotics on Thurs. as well. Sounds like 2 chances for height and weight checks to me! I know I am talking growth spurt for AJ, but I have also been thinking that she may need a bump in gh. It is hard to describe but I 'just knew' last time too. I have felt I have seen the signs for just a couple of weeks so I am waiting for our visit to Dr. Clark.

Language has been funny lately. Ayden Jane is so much more interested in talking to people but is continuing to use the "list of questions" approach. Thankfully, with the birthday behind us, "how old are you" has been knocked off the top of the list! Her skills are improving as she can converse a bit after her initial ice breaker. It has been interesting for me to see just how much (well, actually how little) other people can understand her. It has been exciting to see a few people be able to adapt to her speech fairly quickly and not need me to translate too much.

Well, 2 more soccer games to go tomorrow and I am tired! I have pictures to post from last weekends volleyball tournament that I still haven't gotten to, but I will try to get some soccer pictures tomorrow. (If I remember!)

Thursday, October 7, 2010

Daddy Day

Gary has been busy lately. I mean the sort of busy where he is just not here. He is changing jobs so he is currently training at the new hospital during the week and working at the old hospital on the weekends. (he is an ICU nurse) Today he was just off. No work during the day at the new job and no work tonight at the old job. Ayden Jane attached herself to Gary for the day.

Gary picked her up from school, played with her, napped with her and she only allowed him to get her food, help with her shoes, put her in the car... We went to Kayla's volleyball game tonight and she sat next to him, leaned on him... So very cute. Finally, at bedtime Daddy had to do it all... So sweet. (And, I confess, a wonderful break for the Momma!)

Wednesday, October 6, 2010


Mckenna is 9. She is absolutely amazing with Ayden Jane. She is brilliant and funny and artistic and athletic. She is also, however, occasionally very fearful. It was not always this way. In fact, when Mckenna was a tiny thing she was head strong, afraid of nothing, full of confidence... We saw a dramatic change about a year after Ayden Jane was born, shortly after Ayden Jane was diagnosed. It was a rough year on Mckenna. AJ's first 8 months seemed like we were in a fight that we were going to 'win'. I think most of us saw AJ's troubles as somewhat short lived as she continued to slowly get stronger... Once diagnosed, it was a whole other ball game. I think, for all of us it was like a hard blow on already weakened hearts. We were sad and we felt like we had failed somehow to save Ayden Jane. We knew now it was life long... During those same months, we lost a family friend to cancer. It was simply too much for a 7 year old to realize that Mom and Dad cannot fix everything and that bad things happen to good people even when we pray. Deep stuff for anybody, let alone a second grader.

Mckenna worked through things slowly and we began to rebuild her confidence. The lights were on at night, she started karate... Ayden Jane continued to amaze us and Mckenna's broken heart over her little sister started to mend. I would say by age 8 (third grade) Mckenna was happy and confident most of the time, but every now and again you would see that grip of fear. It was just painful for us to watch.

So, last week, after a soccer practice we were riding in the car on the way home and we began to talk. I don't remember exactly how it started, but we talked about how she is still hesitant to tackle or go for the ball sometimes. I told her she wasn't always that way. She said she remembered, but she just didn't know why she now feels afraid. I told her the story. I told her how she was before Ayden Jane and the profound effect it had on her because she loved AJ so much. I told her I was sorry she felt scared sometimes, that is was hard for all of us to handle and that it was more than a 7 year old should have to handle. that I wished I could fix it for her. Her response, (with a tone of relief and excitement all rolled into one) "so that's why I feel so afraid sometimes! Well, I know now that is nothing to be afraid of so I can stop being afraid!"
The next night as I left her room she said, "Mom, you can leave the light on if you want but you don't have to anymore." Mckenna has been joyful (likely well rested) and positive and relaxed this past week. Oh, and on the soccer field at training last night? Let's just say, she rocked! She was ... free.

Tuesday, October 5, 2010

Birthday Festivities.

Bad news. We were so busy having fun I did not take any pictures during Ayden Jane's little party!! Terrible parenting. Jen told me she would bring her kids back and we can just take a few pictures as a redo. Sounds like a plan.

Really, Ayden Jane did not think of the day so much as a birthday party as just having her friends over to jump on the new trampoline. Ayden Jane really got into her birthday on Friday (her actual day) at school she took in 'cupcakes' and shared them with her class. The cupcakes were made basically from almond butter, bananas and eggs with some tiny semi sweet chocolate chips in them. I made them in the little mini muffin size. The teachers, much to my surprise, said all the kids absolutely loved them! I sent enough for the kids to each have 2 and was told most of them wanted the seconds and more. Ayden Jane was the first birthday at school and so was surprised and excited about everything they did. It was adorable. At her home party we just skipped desert and I don't think anyone really even noticed.

So, what have I learned for future birthday's dealing with PWS? First of all, I will have all the food prepared ahead of time. We grilled out and did cut up some pineapple and had salad... It was simple, but it caused Gary and I each to be busy and there was no clear distinction as to who was 'feeding' Ayden Jane... She definitely ate too much. I could tell by the size of her belly! There was not really anything she couldn't eat there other than a bag of chips. (which at this point she has no interest in anyway) And I think that Gary and I just sort of both fed her not realizing the other had... No harm done, but a good lesson.

Better yet, maybe even a party only requiring a small snack!

Friday, October 1, 2010


Wow. I somehow feel like we have made it. We have arrived. I know that with each passing year the challenges don't go away, they just change, but I still have to say there is a tremendous feeling of accomplishment that comes with today. Early intervention is officially behind us. We are being very successful in a typical preschool. We have a good plan for the next year. We run and jump and play and are happy. We can communicate and Ayden Jane has an amazing little personality all her own.

I think the years in review should come in pictures:

A rough start

Growing. Soooo much behind those eyes.

Little did we know this was just the beginning of her comedy routine.

8 months. Diagnosed. (Wow. How did I not see it?)

Our new diet and supplements are bringing us to life.

The love of climbing and mischief begins.

Strawberry picking with friends.

Summer vacation 2009.

Soccer season begins. (and never ends) AJ is on a mission to swipe every water bottle.

Christmas 2009. Texas hat from Grandma and Grandpa G.

Summer 2010 Ready to take on the future!!

Birthday with family and friends on Sunday. I will be sure to get lots of trampoline pictures!