Beach Pictures

Gary was able to hit the beach with us today. Yep, that meant I could safely take a camera!

These are just a taste of the endless wave jumping Ayden Jane loves. As you can see she has a lot to say to those waves!

And of course, she is not about to hold anyone's hand out in the waves.

Here comes a big one!

Come on waves, where are you?

This is a really off center picture of Mckenna surfing. They were tough to catch today so I will have to get more of her soon.

Gary and Mckenna enjoying the sand and a good chat.

Meanwhile, Ayden Jane has work to do.

Nemo

So, I believe that I am living my own version of the Disney movie Nemo. Ayden Jane is obviously Nemo. She has a nagging disadvantage, (note to self: find a fun name for PWS, like lucky fin) but a huge heart and an unbelievable amount of determination. Me? I am Marlin. I find myself sounding like him multiple times a day, "You think you can do these things, but you can't Ayden Jane!" I won't, however, pin the roll of Dory on any of my friends.... although I am sure there is a comparison there about being guided by well meaning medical folks that might feel a bit like Dory as they try to piece together this crazy syndrome. I know that I feel at times like they are speaking whale.

Ayden Jane is not touching a boat in the open sea, but she is interested in touching a moving vehicle in a parking lot. I don't have to cross an ocean (although somedays it seems like I am) to save her, but she can be a full time job.

The courage and determination in the kid are astounding. Nemo is also an appropriate name as the crowning accomplishment so far this summer is that she has learned to swim. She has been working hard at it and if you have followed at all you know that she has plunged fearlessly ahead. The breakthrough has come! Tonight, she swam toward me and when she stopped to take a breath she managed to get going again. She was so excited she sputtered, "i taked a breath and keep on swimming." Sure enough she was able to repeat it and I would now call her a swimmer.

Go Nemo Go! As for my part? I will do my best not to sound like Marlin. Can't promise I won't be thinking like him though.

I Do It Myself (and I mean everything)

So lately, Ayden Jane has been trying my patience. I mean more than usual! She so ridiculously independent it is enough to drive us both crazy. Mix a bit of I have to have things done my way, in my order... and AAAHHHH.

Let's start with getting in the car. She has to go to the opposite side, open the door herself and climb across the seat. Of course, we have to check out every scrap of everything we can find as we cross the seat and discuss it in detail. Once her little bottom has finally hit the car seat she will panic if you touch the straps first. She wants to strap herself. 20 min. later you are on your way.

How about lunch time. She will make great choices, but insists she get them out of the refrigerator, she will choose which spoon... All the while major spills are narrowly averted...

Clothes? Hard enough to get her to wear any, but don't even think about picking them out for her. The only thing you will assure when suggesting an article of clothing, is that particular item will not go on her body today!

At the playground she wants to climb the highest slide, monkey bar... and wants you a 1/2 mile away to prove to you that she does not need any help. Pool? Her greatest delight is when she swims away from you.

She will push herself to do anything that big kids do. It is a part of her that helps her overcome so much and I am thankful for that, but it would be nice to just take a breath and relax for 2 seconds.

I know, I know, she is 3. Either just being younger with my others at age 3 made it easier, or Ayden Jane is just the most strong willed of the 4. Whichever the case may be, it is exhausting!

HOW DO I KNOW?

It is well known that food, to some extent at least, rules the lives and homes of those with PWS. Now, life for us has been pretty easy in terms of food, but I am frustrated this summer. Ayden Jane is great about what she eats. She does not question that she does not eat foods with sugar in them like candy or cookies... and she knows she does not eat bread or goldfish... She is great about it.

What I have been running into is that she has been telling me a lot lately that she is hungry. She loves fruit and with all the fresh fruit in season we have lots of it in the house. Now if my other kids wanted to eat 15 servings of fruit a day I would consider it a miracle and tell them to go for it. Not so much for Ayden Jane. She also wants nuts and other things she knows are on her list of foods that are good for her.

Here is where I am stuck. We have been doing lots of swimming ect. and maybe she is truly just burning off so many calories that she needs the extra food. But maybe it is the beginning of her belly playing tricks on her and just telling her she is hungry when she does not need any more calories to burn. HOW DO I KNOW? We have had a few pretty big melt downs over food. Is it PWS or is it a hungry kid? HOW DO I KNOW? It is heart breaking to think that she feels hungry and I have to say no in order to keep her safe and healthy. It is just cruel, though, to think she is hungry because I am not meeting her nutritional needs. HOW DO I KNOW?

Ramblings

First off, the big bloated belly has resolved. It did so over a couple of days where all Ayden Jane wanted to do was drink and she pottied more in 48 hrs. than she does in a normal week! I have no idea why it came or why it went. I guess I will leave it as an unsolved PWS mystery for now and worry about it if it continues to randomly occur.

Next up, PT today. Jen is happy with how back to symmetrical Ayden Jane is but she definitely has some work to do on the hanging belly. Ayden Jane hangs her belly on the ligaments in the front and has managed to stretch them out pretty well. She has enough trouble with this problem and then went through the massive belly thing and wow. It is always fascinating to watch Jen work with her on this stuff. She started by having her stand with her heels up on a notebook. (elevated her heels). At first AJ could not even balance properly, but once she figured it out, she was standing beautifully with her back straight instead of swayed. It is another way to approach getting her to stop locking/hyper-extending her knees. They they moved on to lots of belly work and Ayden Jane looked much better. I am guessing that new orthotics in the fall when we go back to school (and actually wear shoes) will be necessary.

On other fronts, Ayden Jane's swimming is getting amazing. Today for the first time she was jumping in the water (slightly over her head) and coordinated getting a breath. She has jumped in the past but just held her breath the whole time and could not figure out how to breath when she came up. I am really hoping this will translate into being able to take a breath while swimming. (Hoping to get some help getting pictures soon!!)

Speech. This summer is our first ever break in ST since Ayden Jane started at 15 months. Last fall we transitioned to the school district for speech and Ayden Jane was doing great. We talked about whether to continue services over the summer and we agreed that we should take the summer off. Now, I don't know that taking a summer off of speech is an option for a lot of families because the speech is working on language/communication skills like vocabulary and expression. For Ayden Jane speech is just for articulation. I was really wondering myself how she would do without it. Let's just say, we (the family and extended family) all agree that AJ has lost some articulation skills. It is not horrible and I am not ready to call Mrs. R, but I will be glad to get her started again. I think AJ will be glad to get things going again so she doesn't have to repeat things so many times! I am sure she will quickly get back on track so I am not really worried, but I can say I am glad to know that it is a totally worthwhile hour a week!

Getting Away and Coming Back

First the getting away. I have had very little opportunity to go... anywhere without Ayden Jane in the past 3 1/2 years. Now, I am not really complaining, just stating the facts. AJ is quite portable and she has traveled lots of places to see ball games ect. She loves to go, so whether it is shopping or swimming or errands, she is up for a trip. Handing over the reins to all things AJ is never an easy thing for several reasons. This trip, Gary was able to get off work and Kayla and I headed to Clemson for new student orientation. It is always interesting to get some perspective when away and then return. I say interesting because it is both good and bad.

First of all a shout out to Clemson. Kayla had decided in April or May that was where she was headed, but I still had not seen the school. It was a great trip and I was really impressed with the school. The orientation was smooth, the campus was great and I think I am ready to go back in time and 'do college' all over again. Seriously, it was just a great experience to see all the opportunities that Kayla will be able to take advantage of. I know I am supposed to be heart broken that she is leaving us, but I am really just so excited for her to start her next chapter it is hard for me to feel bad for me. Sure, I will be anxiously awaiting her return home for a visit and tell us about her grand adventures... but she is going to be so happy there, how could I not be happy for her. She will be missed, but she will always be such a part of our lives...

I was surprised that I actually missed AJ during the 2 days. I guess when someone is with you 24/7 it is not surprising that you miss them when you are away. Mckenna and Ayden Jane had such a great time with their Dad though. He treated the couple of days like a mini vacation.

Since I have been back, I can see that Ayden Jane is definitely dealing with the belly bloat. I have not done much to ease the problem yet. I am guessing that dairy is the likely cause. I think maybe she had a bit too much yogurt and cheese with Daddy in charge. We will see how the next couple of days go.

It has made me stress over Ayden Jane's eating. Then I just get mad that I have to stress over Ayden Jane's eating. Then I head down the road, mentally, of all the things that may cause Ayden Jane's life to be a challenge. Okay, just plain hard. The anger that she has to live with this thing, the guilt and frustration that I cannot take this burden from her, the stress of feeling like every meal, every min. of the day will make or break her future. (yes, I know that it is completely irrational!)

I know that things have gone all to well for us. I am thrilled that this is the case, but it does not erase the pressures and worry of raising a special needs child. Just sort of makes you roll along almost believing that she is not a special needs child and then you get hit all over again with the emotions of learning that she is, indeed, a unique gift to be handled with special care.

Okay, tomorrow I will start to address the belly bloat from a dietary stand point and see what I can do. Guess it is time for a quick weight and height check too just to make sure things aren't more in the other sort of big belly direction.

Epic Fail

That would be how Mckenna would describe Ayden Jane's attempt at swimming lessons. If you've followed along this summer you know Mckenna swims on the swim team. Ayden Jane and I watch most days for the hour she is swimming and we were going to have Coach Fabio take a look at what Ayden Jane's got so we could see about helping her be a bit safer in the water. (okay, so help ME) Yesterday, he had a break at practice and invited AJ to come in with him. She was hesitant but went with him. Ayden Jane completely shut down and even freaked out a bit. If you had never seen her in the water before you would think that it was her first time!

I asked her afterwards what her trouble was. She said the pool is a little bit loud and scary. I guess it being an indoor pool with lots of kids swimming.... She has a point. Anyway, she proceeded today to swim really well in our pool and seems no worse for the wear. Although, I think Coach Fabio is convinced she was scared by him.

Plan B is to go swimming with Jen and her crazy crew. Jen, as well as being a competitive gymnast, taught a bit of swimming in her day. I think between the 2 of us we can get Ayden Jane to take that breath and then there will be no stopping her.