Tuesday, June 28, 2011

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.

Sunday, June 26, 2011


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!

Friday, June 24, 2011


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?

Wednesday, June 22, 2011


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!

Sunday, June 19, 2011

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.

Tuesday, June 14, 2011

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.

Sunday, June 12, 2011

Looking Forward

One of the joys of parenthood is looking forward toward what type of person your child will grow into. Will they be driven to run things, will they be more servant oriented, will they be academic or more of a hands on kid... Yes, it is somewhat the question of what will they do, but beyond that. I truly enjoy thinking about the possibilities my kids have before them and the potential within them. The picture changes and either broadens or narrows as the child grows. No pressure to make them into your picture, more in a trying to figure out the picture as small pieces are revealed.

I guess Kayla going off to college next fall just kicks this sort of mind wandering off. It is pure joy with her because she knows generally what direction she is going and has all the discipline and skills to get herself there. With Noah, a rising junior it is fun in sort of the opposite way. It is so wide open because he just doesn't really know what he wants. Mckenna? We all love to think about what she may do in like. She is dripping with brains, beauty and creativity. Whatever she decides on she will most definitely succeed.

When it comes to Ayden Jane it is a strange little game. Obviously she is too young for us to really have any idea what her long term interests will be. But for me to try to picture her just after high school.... College? A job? Will this nasty Prader Willi Syndrome take her joy? Her zest for life? I guess it is just that constant collision of what AJ's life is supposed to be like and what our actual experience is. Some days I can picture her being able to handle PWS well enough to just take it in stride, go off to college and have a great future. Other days I worry about being able to care for AJ when she is older and we are OLD. I think I most worry about her finding her purpose here and happiness. Which really go hand in hand if you think about it.

Thursday, June 9, 2011

Yucky Posture

Well, we had PT today. Last week Jen was noticing the wierd posture Ayden Jane has started. In fact, her response when looking at Ayden Jane was, "UGGG." I will try to describe what AJ is doing but I am not promising anything.

Ayden Jane is shifting her weight to her right side, locking/hyper extending her knee and rotating her body so that her left shoulder back behind her a bit. Jen took stickers and put them on each shoulder. Then we had AJ stand and look in the mirror and told her she needed to be able to see both stickers. Ayden Jane could not see the left one and really had no awareness as to how to make it come forward. We worked on it for a bit last week but did not get far. That was the day that Ayden Jane was starting to feel really puny...

Now to this week. I was sort of hoping that her not feeling well was contributing... but alas, she still does not look good. Jen tried to get to the root from a couple of different angles. Basically, Ayden Jane is just REALLY good at compensating for muscles she does not particularly like. We spent a lot of time with our feet on a line pointing straight ahead and throwing and catching a ball a bit to our right. Jen did several things to get at the root of why she is doing this and I am not sure she knows yet, but what was interesting is that Ayden Jane seemed to be much better after some good stretching on the left side. I am guessing that the tightening of the left side is not the cause, but more from a bad habit that is in turn making the bad habit harder to break...

Anyway, this week we are handing things to Ayden Jane to her right, throwing balls to her right, coming up behind her and getting her to turn her head over her right shoulder to look, swinging a bat to improve rotational control and stretching the left side a bit. Also, sitting criss cross apple sauce to stretch the outside of the right leg that wants to internally rotate which is likely the start to the whole body rotation. YUCK.

I am so glad we have Jen. She knows Ayden Jane so well and does such a great job of noticing the crazy little things that seem to come with growth in Ayden Jane. It amazes me how Ayden Jane can do so much, climb so well, swim so well... and yet anything that requires static posture she is lousy at! That seems to be where the low tone really shows up. I guess I need to find some yoga for kids around here. Hope we get this straight soon so we can get on with teaching some new skills!

Wednesday, June 8, 2011

Swimming Like a Big Kid and Kites

So today after Mckenna's swim team practice I spoke to her coach for a minute. He is a bit hard to have a poolside conversation with because he has a Portuguese accent and the pool area is noisy... but I was trying to ask him what he might be able to do with Ayden Jane. Basically, she is on a mission to swim out to the middle of the pool with no plan on how she can possibly return to solid ground. She also likes to swim to the bottom of the 3 1/2 feet and wait to see how long it will take me to get her... You get the picture. I just don't think that putting her in swim lessons for a 3 yr old is going to help much. I also don't think she will be able to listen well enough or have the motor control to put her in with older kids. I don't know if you can actually teach a 3 year old to swim 'like a big kid'. That is what I was trying to ask him. Anyway, he suggested that I put AJ in a swim suit and then after practice next week he will take a look at what she can do and what he might be able to teach her.

Ayden Jane was really cute when coach Fabio was trying to talk to her. She just looked at him and then just as we were done and he was starting to turn and walk off, she looked at me, grinned and said, "he gonna teach me to swim like a big kid?" I sure hope she is capable! It would definitely reduce the stress of pool time this summer.

This evening Gary was put on call so we decided to head out to the beach for a nice evening swim. The ocean was rough and the breeze was chilly so Ayden Jane was finished swimming before Mckenna. Gary stayed in the water and helped Mckenna surf and AJ and I watched a couple girls fly kites. Ayden Jane was fascinated with them. She just watched (and asked questions) and enjoyed. Yes, Gary promised her he would take her to buy a kite tomorrow. How can you say no to that sweet little voice. She was telling him all about them and asked with lots of pleases.

Monday, June 6, 2011

Summer Fun

It has been 5 days on the antibiotics and Ayden Jane is still very junky. We went to the beach for the past couple of days to do a sort of natural saline therapy. It has helped, but there seems to still be so much in there. I think if she is not cleared up by the end of the week I will have to take her back in.

As for the beach, Ayden Jane LOVES it. We were there yesterday and she was having so much fun. She asked me if we can go surfin', every day, forever! There are no words for how happy I am that she is a beach bum through and through!! Mckenna is 10 and now loves to surf so she loves the beach and to have them both happy at the same place is awesome, but to have them both happy at the same place and that place be just a mile down the road and my favorite place.... what more could I ask for! (Okay, so maybe to be able to actually read a book there once in a while would be nice but I'll take what I can get!)

Ayden Jane has started to 'surf'. Actually she is riding a boogie board, but she thinks she is surfin' so I go with it. I help her get up on her belly on the board and balanced. Then give her a push into the wave and she rides it in! Well, usually. She has taken her share of spills, but she comes up happy every time. It is adorable and exhausting on both of us. She also loves to just go out waist or so deep (on her) and jump the waves. She tends drift out to chest depth, but a good size wave sends her back. She will allow me to stand close by, but does not want me to touch her! I figure it has to be some sort of therapy because it is hard work out there.

I do need to get my act together and start to really work some fine motor skills. Ayden Jane's attention span for sitting still and working those things is not good. She will always start things like coloring or cutting with enthusiasm, but gets frustrated very quickly and wants to move on in no time. It is strange to me. She will work soooo hard and soooo long on gross motor skills but just does not like to work the fine stuff. I am hoping to get into a bit of a routine where we can get the wiggles out with swimming.... and then sit down and really get some quality time on the fine motor. We shall see.

Saturday, June 4, 2011


Ayden Jane has been remarkably healthy through her first 3 1/2 years. No ear infections and only a few nasty colds. She even made it through the first year of preschool! Well, it seems her downfall has come in the form of inhaling water! She loves to swim and her favorite game lately is to swim away from me and have me chase and catch her. Only problem is that she is not a good enough swimmer to laugh and swim at the same time.

Now for the bad parenting part of the story. This happened on Monday afternoon. I thought something was odd the one time she came up... but she was undeterred so I just left it alone. She was coughing some that night and into the next day Tue. but was acting as normal as ever and I just figured she needed a break in the swimming. Wed. came and by afternoon, during PT we started to realize something was not quite right. We finished PT, put AJ down for a nap and then I took her to Jen's house so she could play with the kids during Kayla's graduation. When I picked her up she was running a fever and sounded AWFUL. Jen was worried too, so I promised to take her in the next morning. As for that night? AJ came with me to Kayla's graduation party. She fell asleep on the chaise by the pool. It is rough being a 4th child, but I just really wanted to be at the party!

Sure enough the next morning the doc heard something he was not happy with in the right mid lobe so on the antibiotics we are, but the x-rays looked okay. That was 2 days ago. Ayden Jane is feeling much better in that her energy and personality are coming back to normal, but she has sooooo much junk in her it is amazing. The cough is horrendous and her ribs HAVE to be sore. Hope she clears all this stuff soon!

In other news, IT IS SUMMER!!! All the kids are out of school!

In PT on Wed. Jen was NOT happy with a weird posture thing that AJ is doing. I doubt it is related to the pneumonia, but I guess I can hope. She is rotating so that all her weight is on one hip (the right one). She ended up taping one leg, but with everything else going on I think we will have to get to the bottom of it next week. Crazy tone. It still just does not like to stay on and it seems AJ devises ways to allow as much tone as possible to be turned off when she is static. Especially during growth spurts... Glad I have Jen to keep her evened out!