PWS Family

Often times when we are connecting online... the families who are affected by PWS often refer to themselves or are referred to as one big PWS family. There are some definite things that cause us to feel like a family. None of us asked to be a part, just like we are born into our own families, we were born or are related by birth into the PWS family. We are connected, like it or not (and by the way I have to say I have loved getting to know our PWS family!).

Just like family, we are closer to some than others, but we deeply feel the pain each other suffers and we love to rejoice in each others triumphs. It amazes me how hard it is to hear that a little one is struggling with hunger issues, scoliosis, behavioral issues... you name it. Not to offend my friends who have all typical children, but seriously, it is ridiculous how it pains my heart to hear of the struggles our PWS kids. On the flip side, it can make my week to hear about how a little one finally has thrown aside his walker and is daily transforming into a full time, gettin' into everything walker. (Go Dean!)

I find myself a little bit addicted to cheering these kids on, praying for them, doing what we can to raise money for research. I sometimes wish I could just travel around and visit all of them. Since that isn't happening, I will just continue to enjoy pictures, stories and the connection we have walking this crazy journey.

So, to all those of you who are part of this journey because your personal family has been touched by PWS, I will be cheering for you! For all of you who are walking this journey with us simply because Ayden Jane has stolen your heart BLESS YOU. We can use all the help we can get.

According to AJ, All is Good

So I think I am ready for school to start back. I have thoroughly loved the summer days with no appointed times or schedules... but I am ready for a schedule. Ayden Jane is getting 'antsy' with the same old stuff we do and is getting into everything as a result. She has come out of this last little developmental spurt so funny and full of energy and life. It is wonderful and exhausting!

Today we picked up the house and then went surfing and to the pool. We left about 12:00 for the beach and did not get home until about 3:45. Nearly 4 hours of swimming! Ayden Jane took a little nap with Daddy for about 30 min. and then we went to the mall to do a few things. She was literally running up and down the mall giggling with glee. She never wears out.

At home she is getting more and more independent. Well, if that is possible! She wants to get her own food, wear sweatshirts in 100 degree weather, climb the shelves if the mood strikes. She feeds and waters the dog each day and honestly thinks she is helping when we wash Sadie and give her hair cuts. AJ just has her own opinion about EVERYTHING. And is sure there is nothing she can not do. I know that her spirit and determination are a big part why she is doing so great but at times I just want her to get into the car seat the direct easy way and let me buckle it!

She has been adorable lately, however, with asking about why God made her. She has totally latched on to the fact that she is special and loves to ask what makes her special. Then she goes through our family asking about why they are special and how God makes every body different and special and why.... Then she usually switches gears to why we have a big family and how lucky she is to have a big family and how Daddy loves her and Mommy loves her and Kayla... you get the picture.

I guess I see why she is such a positive, confident little kid! She knows there is nothing she can't do and that she is special and everybody loves her. Wonder if that will stick through her teens.

The After Trip

Since we returned on a Monday, we managed to get both horseback riding and PT in this week. I figured that would be a good thing after such a long ride. Past trips have made it clear that car seat time is not really Ayden Jane's friend.

So last night we had horses. Ayden Jane was awesome. There is another little boy in the class, J, who Ayden Jane really likes. J is an adorable boy who is a bit older and does some pretty cool things on his horse. AJ sees J doing something, she has to do it! It is good because the things that J is working on are very similar to AJ and he is a bit more capable so AJ really pushes to do what J can do. She worked so hard and was so proud of herself.

Today, came PT. I was expecting that the trip would require at least one PT session to be devoted to 'fixing' the car seat trauma. Instead, Ayden Jane did great! She still attempts to rotate a bit, but she was doing some great work. After some good gross motor work Jen really got down to some fine motor stuff. Basically, strengthening those fingers to get writing. It was very cool. Jen taped her last 3 fingers down so that AJ had to really work the index finger in the position Jen wanted. They did patterns with clothes pins and then Jen transferred it to using a marker. Once she freed the middle finger for a bit of added support, Ayden Jane was doing pretty well with her grip writing. It was some good hope for me as I have seen AJ really shy away from writing.

So, I think the wild spurt has ended (2 weeks once again) and it looks like Ayden Jane is ready to learn volumes. I am not sure what was connecting, but it seems like a very age appropriate developmental leap. Hard to say, but language has improved in her ability to really converse back and forth about a topic. Also, her interest in reading and writing has jumped. She seems to be able to more smoothly connect skills as well, for example, she can steer around anything now when riding her bike and carry on a conversation at the same time. In the past 2 weeks she has improved in her swimming to where she is now swimming across the pool, doing handstands on the bottom like Mckenna and is even trying to do strokes.

We're Back!

What a great trip. All four kids were awesome. We were packed into our Ford Freestyle which was great, but not really intended for 18 hour trips with a family of 6! Especially when 4 of them are full adult size including two guys that are 6' 3".

The kids were able to spend some time with their grandparents, cousins and aunt and uncles. Also they met Gary's cousins (not sure what relation that is to our kids). They listened to stories of Gary and his family times with cousins... They learned a lot about his family and what a nutty but loving bunch they were/are.

Ayden Jane was so funny the last night as the stories and laughter were going on around the table, she was on the floor playing with her beads. I went and told her it was time to clean up and get ready for bed. She asked if all the stories were done yet. Then told me that she only laughed once but wanted to hear the rest of them. I really was surprised because I didn't know she understood what was really happening. I mean, sure it was a big group of people she hadn't met before talking and laughing. But somehow she knew this was special.

She was so open and talkative with her grandparents. I was a little worried she would play the shy routine and not talk much... She acted like she has been around them her whole life. By the end of the trip Gary's sister Linda (whose house we were staying in, Thanks Linda) noticed Ayden Jane's volume was much louder. Yep, by the end she was quite comfortable.

So here is to a great road family road trip to see family. Not sure we will be able to wrangle all our kids in the car for another family reunion by the time one comes up again, but this trip was a good one.

Speech Therapy and Letters

We decided at the end of the school year to take the summer off of speech therapy. I was curious how it would go, but confident that we would not lose too much ground even if it proved that the benefits of therapy have been bigger than we thought!

So how has the experiment gone? We can positively say that the speech therapy is a necessary part of Ayden Jane's life. We are lucky in that, for Ayden Jane, ST is for articulation only. I don't believe a break in therapy is possible for those who are dealing with apraxia or other more whole language delays.

Basically, we find that we are asking Ayden Jane to repeat herself more and more these days. That is something that we, as those who spend a lot of time with her, did not have to do last spring. I can't put my finger on what sounds are getting left out or replaced or 'mushy' but I find myself asking her to say it again... and again. Luckily Ayden Jane is not getting frustrated by this and I get a kick out of how, on the second or third 'say it again' she usually get louder. Like she thinks we just can't hear her or something.

Her word order is often strange and she still uses pronouns incorrectly more often that correctly. (or maybe I just notice cause it sounds so cute) For example: Sadie not give me she ball. or Her want me to give she a drink.

The poor articulation does not, however, deter AJ from increasing her vocabulary. She is good at using big words (if you can understand them). Some off the top of my head are: supplements, eventually, frustrated, patiently, annoying, actually, determination.... She is just a parrot and understands words and loves to use them.

Ayden Jane is also getting very interested in letters and books and reading. She is constantly on the look out for the letters in her name. She is good with recognizing them and is interested in how the letters make words. As for writing them? Wow is that an area that we will have to really work on. I will leave that for a future post.

Travel

Well, I have several posts rolling around in my head, but no time to get the all out. I will start with how travel has been.

We left home EARLY on Tuesday morning. We made it to Atlanta by about noon and hit the water park at Six Flags. Ayden Jane was good but very ready to get out by the time we got there. The big kids took off for the giant slides and there was lots for Ayden Jane sized kids. We found a couple of slides for kids over 36 inches and AJ just knew she was finally a big kid. She was soooo excited! She and I walked the hill and stairs to the top and slid down the slide on our mats over and over. I was getting tired and she was going strong. She had the best time. It was a great day.

We stayed until the park closed at 7 and Ayden Jane managed to hang the whole day and then stayed awake in the car for another hour or so! She is just loving having her whole family together. She kept asking, "is everybody going to Texas? All of us?" Not sure where she thought we might leave somebody, but it has been so cute.

The only draw back to traveling with Ayden Jane has been the fact that she does not watch tv. Yep, 18 hrs in a car and she basically refuses to sleep or watch movies! We have taken turns entertaining her and she has traveled amazingly well. I am sure that there will be some residual effects on her balance... that Jen will have to correct but so far so good!

Have to admit I am not really looking forward to the return trip though.

Surfin'

Today, I spent at least a solid hour doing this!

It was hilarious as Ayden Jane rode the boogie board in she had a fan club watching her. The first 200 times she jumped up and down with excitement cheering for herself and with her fan club. (the fan club was a group of very nice ladies on vacation and just getting the biggest kick out of AJ) Gary came just at the end when he was placed on call for work so he managed to see the last few and catch this video. Yes, that's me in the water.

Wild Child

Ayden Jane seems to be on another one of her crazy spurts of... out of control energy and determination that is completely maddening, adorable, fascinating, exhausting, remarkable, frustrating... And entirely exciting because it usually means some new developmental leap is on the other side.

You'd have to look back a good ways to find descriptions of earlier leaps. When she was younger both the tornado behavior and the spurt were even more visible but there were definitely some similarities between those days and the past few.

Let's recap. Tuesday, Jen was even weighting her down with ankle weights to get her to slow down on the moon shoes. (something proprioceptive...) Still she was a bit uncontrollable as she was moving before she was thinking and there was no stopping and redirecting her. Jen had to make some pretty great catches as AJ was going way too fast. We were trying to get her to do some static work. Yea right. It was pretty funny to watch and made me feel a little better that even the baby whisperer was having trouble with her.

Wednesday. I went running in the morning and by the time I returned Gary was done with her! Well, done with the tornado of destruction and the 2 massive wipeouts because she would not slow down. He said, "she tries to do things she can't and goes at it so fast and hard she takes out everything in her path. If she would just slow down and listen..." Yep, apparently he is Marlin too. I took Ayden Jane and Mckenna to the safest place I could think of, Leaps n Bounce. Yep, a padded play land because we both sort of needed a padded room. Mckenna would come to get a drink and AJ was right behind her saying, "come on Mckenna, lets go leaps and bounce..." After a couple of hours of that I thought she might nap in the car on the way to Mckenna's swim team practice. Wrong. When we got home, I traded her off to Gary who took her for a swim. 2 hours later and after she had learned to swim (not pretty, but effectively) across the deep end, they returned.

Thursday has come and gone. We kept busy all day including a swim this afternoon. Still, after nap, we had 2 spills and she was climbing all over me. I took her to the play ground and she did all the climbing she possibly could. Once she was done she came home and played calmly and sweetly with her toys. The need was filled for the moment. It is just so strange to watch and I am so curious what connections are being made in there! Will it be obvious? Will it be physical, speech related, cognitive? Who knows. I guess it is exciting enough to just know that, although her developmental leaps are still not always smooth, they keep happening.

Bedtime Stories

So every night when it is bedtime, Ayden Jane picks out 2 books. One for me (or Gary) and one for her. I am instructed to read mine first, which means read it to her. Then it is her turn to read to me. I am not sure when this tradition started, but it is very cute. She has a couple of books like Brown Bear, Brown Bear where it works pretty well. Many of the books though, her rendition is fascinating. It is a mix of spot on and no where close.

Tonight, however, well, I'd say, it umm... left me speechless.

The book she 'read' was Shaoey and Dot. It is a story by the Steven Curtis Chapman family in honor of the adoptions of their little girls from China. The story goes that a lady bug finds a noisy bundle and then stays with the little baby at the orphanage until her family adopts her. Okay, so that was the ridiculously short version. As the lady bug watches over Shaoey and sorts out where they are, how they are cared for... this line comes in: "She started to fly, then the little thing cried as if saying, "Please don't go away!" Ayden Jane's version is "please not leave me". Dot (the lady bug) stays with her, of course.

They stay together through baths and feeding and napping and crying... Then the day comes for Shaoey to get a family. The book is a read aloud book and is a long, sweet poem so it is not straight forward. Here is an example right before she 'gets her family':

"But, then, there's a cry that's the saddest of all,

Infact,it's unlike any other,

It comes from a deep, empty place in your heart

That can only be filled by a mother.

"And after today, I will never again

Hear that sad song coming from you,

You're getting adopted, you're getting a mother,

And you're getting a family too!

I have always thought it was cute but was not sure how much Ayden Jane really understood about it.

Then she 'read' it to me. She came to the end and said, "I missed a page. She needs her family." I went backwards page by page for a few pages and she got excited, "there it is. She have a new family. She has a family forever." Next, AJ dropped the book and grabbed my face (to make me look her in the eyes up close) and said, "will you always be with me? please?"

Yes, I squeezed her tight... and assured her that I love her and will always be with her and we will all always be her family. She just astounds me at times. She does a good job of expressing herself and uses a wide variety of vocabulary, but every once in a while there is a glimpse of just how deeply she understands things.