Physical Therapy Update

We are down to having physical therapy once every 3 months. Through the summer we were still at every month and worked hard to prepare for life without orthotics. In August we had x-rays to check on Ayden Jane's scoliosis at Shriner's and input on giving her a trial out of the orthotics. Everything looked great and she got the go ahead.

This was the first post orthotics visit and I can say Ayden Jane has kept very active for the past 3 months. Jen was super excited to see how great she is doing and there were nearly tears as she summed it up. Jen said, "I feel like we have worked for 8 years to get her to look exactly like this and she has done it. She looks amazing. Her tone and balance and symmetry are blowing me away."

We are so excited and she could point to things that were so much stronger - she feels as a result of swim team. I am not sure what has strengthened what but I do know that she has worked hard at swim team, spent lots of time on the trampoline, played soccer, ridden bikes, walked the dogs and just generally been as active as ever before.

Ayden Jane will have about 2 months off of swimming and soccer so Jen is going to give us a running plan. We just haven't had time to run with everything else so we plan to run during her 'off season'. I asked her to include some goals for distance running like we have done in the past but to also include ideas for speed workouts. Ayden Jane is actually excited about doing it and we will start in 2 weeks when soccer has ended.

Speaking of soccer, Ayden Jane is going to extend her soccer season by 2 weeks by playing with the kids who train and play travel soccer. It is going to be way over her head and I am a little nervous for her. I just want her to keep enjoying the sport and have no intentions of her playing with this group regularly. Ayden Jane is perfectly suited to a rec program. She heard about the chance to play and has a couple friends who play with that group so my fearless child is all in. Wish us luck.

Crazy Right Side

Soooo much to catch up on with Ayden Jane.  For tonight, straightening out the right side.

Over the summer of barefoot fun, we have noticed some trouble with Ayden Jane's legs/posture.  She spent the summer out of her orthotics and did great at first.  We have made the trip to Mr. Alan to get her new inserts made and Jen was checking things out closely last Wed.  Basically, she feels that the right leg is internally rotating at the hip and AJ has gradually caused it to go far enough to change the track her patella is taking over her knee.  Great.

She had her stand in her old orthotics, taped up her leg, did some exercises... and started to turn on the muscles AJ has apparently been avoiding.  Ayden Jane's entire posture changed!  The shoulders were straight, the belly pulled back in, her hips were in a good position, her feet looked straight.  Wow.  I continue to be amazed how Jen can find the one thing that causes a host of posture issues!

The result?  On Monday when we take AJ to see Mr. Alan and get her new orthotics, he will check her out, measure her and make her a little knee brace for 'training'.  Jen thinks that she will not need it long and she will start taping her on Wed. before it ever comes, but she wants to protect those little knees from future issues.  I am looking forward to seeing the more athletic look to Ayden Jane's run return.

AJ has also had some very intermittent right eye strabismus.  We will see the eye doctor on Sept. 10.  I have no idea if there is any issue with her vision or if there is much you can do with something so intermittent.

The whole right side things is just so odd.  Since Ayden Jane was tiny and Jen started working with her, it was her left side that was always behind the right.  I guess she loves to keep us guessing!

Sensory Craze

Ayden Jane seems to be at it again. Lots of showers because we are itchy. Lots of running around nakey. Lots of emotion, sort of like just feeling EVERYTHING really STRONGLY. Attention span of a flea for playing with toys. Lots of climbing on the rest of us looking for touches and wrestling. Lots of volume. One day loads of sleeping, the next day NO sleeping. One day refusing food for looooong periods, the next day eating very well. Potty accidents. Laughter followed by tears followed by yelling followed by laughter... EVERYTHING is a conversation of why's... Somethings in that little brain and body are over firing and others can't get going.

I can't imagine what it must be like to be in there.

I talked to Jen about it yesterday during PT. I feel like she is just taking in so much right now she just cannot process it all. I was thinking school and just development. Jen added the orthotics to the list. It just seems for AJ, little adjustments make big changes. This is good because she is very capable of learning and adapting and responding to therapy. It is challenging because sometimes she just cannot handle the amount of change.

So, what did we learn in therapy? Her legs look fantastic! The orthotics are doing a great job. Jen feels her legs look more toned and her form when running is almost athletic looking.

Sad to say, her upper body is in disarray. Jen is not worried, so neither am I, but the belly is hanging and the left shoulder rotating backwards when she is statically standing. Apparently, (per Jen) she looks great in the way that she is shifting her weight something, something... (She loses me sometimes) when coactive.

Her left arm is an enigma. When it works with the right arm, like picking up a ball, climbing... It is strong and useful. However, in isolation, she cannot figure out how to fire the muscles there. BIZARRE!!! We inhibited (strapped down) her right are and had her take a bean bag in her left had and do what is equivalent to a bicep curl with it. She could not make it happen. Totally neurological. We know the strength is there. After working with her she could do it, but the concentration required was astounding.

Homework this week? Use lefty as much as humanly possible.

Jump Highers (continued)

Yesterday, (yes, I always seem to operate a day behind) Jen came and worked out AJ in her new jump highers. It was FASCINATING.

First up we took AJ outside so Jen could watch her run. Not sure exactly what Jen was thinking, but she saw something she wasn't so sure about. For my part, I saw a kid who was doing her best, but was obviously still not used to those things on her feet! AJ said they felt good though.

In we came and AJ wanted to show Jen how good she can jump so we had to oblige. She jumped as usual and hopped very well. In some ways she seems very stable in the JHs and in other ways... very different.

Time to check the posture. Standing in her big girls her legs looked AMAZING. I just kept staring at them. (I was behind her) The best I can describe is that is was a very athletic stance. Significantly different. Jen used her big PT words that I don't even remember now, but when she uses the big words she is definitely impressed (or concerned).

It was funny to watch AJ as Jen had her do some activities because she would start to posture how she 'cheats' but the JHs wouldn't let her. Then she would over react to that so there was a bit of swaying going on. It looked a bit like she was on a boat!

Now here's where the trouble comes in. Ayden Jane still shows a definite left side weakness in her left arm. She was still dropping back the left shoulder and avoiding the left hand. Jen worked for a good while getting the left engaged and AJ looked much better.

What really showed up was when Jen put the 'clomper stompers' on her. We used to make them with coffee cans and string. Flip the can upside down and run string through holes and up to your hands as handles. Jen's were pretty, plastic and green, but the same thing. Ayden Jane can work the right foot perfectly. The trick is to be able to pull up with the hand and bend the knee, taking a step, at the same time. Ayden Jane simply can NOT use the left hand and left foot together! It was really amazing to watch. Such a hidden little piece of evidence of a still out of kilter neurological system.

Since the beginning of PT at 5 months we have seen evidence of the left side weakness, particularly above the waist, sort of come and go. For a good while, the left side was just about 2 weeks behind the right. It was very apparent when learning to crawl... It was just amazing to see it 3 1/2 years later, just in a different form.

So, we are excited to see how Ayden Jane does after she has some time to get used to the JHs. I think it was really surprising for me to see what a change in her stance they made.

Jump Highers

Yesterday I took Ayden Jane to see Mr. Alan. He is the orthotist who made her AFO's. Besides being a really nice guy, he works really closely with Mrs. Jen (PT) and so between the two of them Ayden Jane gets the best help in the business.

Ayden Jane's right AFO is made to keep her from supinating. She likes to curl her little toes and roll onto the outside of that foot. The left one is made to keep her from pronating. Yep, one uneven little kid. Apparently Ayden Jane is a master of finding 'compensatory patterns' which basically means she can find a way to avoid any muscle she desires. We just call it cheating.

Okay, so none of that is too exciting. Today she wore them to school and she did not stop jumping by the time I left! When I picked her up she had noodles for legs. She even had trouble climbing into the car. It was as if she worked muscles that she had not used in a loooooong time. Can't wait until tomorrow to see if it was just the workout she gave herself because she was so excited about them or if we have just caught up with her cheating and are forcing her to play fair.

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.

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!

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!

What's New in PT

Yesterday we had our usual Wednesday physical therapy. It is typical to me, but I have had lots of people ask me just what we do with AJ in PT. Some days we concentrate on gross motor skills which is more classic PT and some days Jen focuses more on fine motor skills which is more OT (occupational therapy). Lots of kids with PWS see have both therapies weekly but we have gotten away with having Jen work them both.

The theme of PT right now is core and shoulder girdle strength seconded by balance and coordination to throw, catch, stop and kick balls. We played outside for most of it. Ayden Jane learned to pump on the swing to keep herself going. Jen also had her standing in the swing and using her arms and weight to swing standing upright. Jen had AJ on her belly on the swing and AJ had to come swing up and grab a ball (Jen made her reach way up with her hands to do it as she was swinging through) and then throw it back on her next swing back. It was really hard work for AJ. We have a set of rings on the swing set and she was using them as well. Ayden Jane got hot and tired so we headed inside to finish up.

Once inside it was ball skills. Ayden Jane is good at catching the ball tossed to her. She did well with catching the ball after one bounce. Not so well when it was bounce, bounce, catch. The timing of that was hard. As for kicking, Jen had not seen her kick in a while. Let's just say all the time on the soccer field has definitely had an effect! She can actually kick the ball with a bit of power now. She is definitely a left footer though! No power in that right foot.

All in all I'd say she worked hard and did a great job. She was thrilled with the stickers she got at the end and was happy to sit on the sofa and talk to them when she was done.

Next up? Get that kid a bike mom. She is ready to learn to peddle. Of course, I will have to keep a close eye on her as she is prone to wander!

Whew! And Belly Update

That's what I have to say about how fast time is going these days and how busy we have been.

Last weekend I took my parents to PA to see my niece in her high school musical. (She was awesome). It is about a 10 hour drive so I really, really, really did not want to take Ayden Jane. Jen (our PT) was planning on keeping her while I was gone, but her own little kiddos got sick. It was a sick, sick that I did not want to take a chance on AJ getting. Her active, healthy little ones took a week plus to kick it so I was not interested in finding out just how much it would wipe out Ayden Jane. I was to leave Friday morning and I spent Thurs. morning preparing to take her. Then, Thurs. afternoon I discovered that my sister was not making the trip! A loss for my niece, but a gain for me.

Now, lets put this into perspective. On Sat. night, I would be 10 hrs away and Gary would be over an hour away. Next in line to know all things AJ is Kayla, but she was with me in PA. The only other person to ever watch AJ for a significant period of time was Jen. Gary took care of shots before he left for work (remember he works night) and I wrote out whatever directions I could quickly think of. I did not prepare much for aunt Bev because I had started working on plans to take AJ and it was a late reversal. It seems all went well. When I ask AJ about it all, mostly she is just distraught that Aunt Bev does not have any balls to play with. Funny.

As for the hanging belly, it seems the tape has worked it's magic. We also have a new (used) car seat that AJ seems more comfortable in. Jen came yesterday and agreed she looked much better. She was able to get to some of the fine motor stuff we are beginning to work like scissors. Ayden Jane did okay with it, remarkably better than a few months ago when we tried. She also had her putting some teeny, tiny beads on a little heart. Ayden Jane struggled with this and tried to avoid it, but Jen convinced her to keep at it. Jen said that she is much more stable in her shoulder girdle so she is keeping her hands in better position.

As for gross motor, our homework was to learn to jump up on things. Mission accomplished. Now all I need to do is give myself an extra 10 min. for every errand I run! Every time we come to a curb, single step... Ayden Jane must jump down off of it, turn around and jump up onto it, jump down... until I can get her to come with me. It is adorable as long as I am not in a hurry!

One last thing of note. Ayden Jane had been wearing her crocs quite a bit lately just because they are easy and she can put them on all by herself. Tue. I decided we needed to get back into our 'jump highers'. Those are her tennis shoes with her orthotics in them. She calls them her jump highers because from the moment she first got the orthotics she started jumping over and over. We would be in the store and she would stop, feel them in her shoes and jump up and down... Well, we have had the same response. It is very cute!

90 Day Eval

I didn't realize that today was our 90 eval. These are not formal evaluations, but an informal review of the goals we had set 3 months ago to see what AJ has accomplished, what still needs work and a chance for me to bring up things I think are important to work on. So, how did it go?

First of all, Jen is so positive that I think she could tell me that the world is ending tomorrow and I would only be able to notice how sunny today is. It's awesome. On the other hand, Ayden Jane is pretty great and her progress always gives us lot to celebrate. (when parenting a special needs child you get great joy over celebrating little things). There were a few technical terms that Jen was very excited about and I was excited about the fact that Jen was excited.

Big skills she now can control, going from high kneel to half kneel, holding and playing there, putting her leg back and switching to the other... Doing the bottom half of a jumping jack. You know, legs together, legs apart, legs together... Crab walking across the room, catching a ball, kicking a ball... There are more but you get the picture.

We are keeping some big muscle work on the list and will be getting AJ to work on building shoulder girdle strength. It is still lagging behind and 'linking shoulder girdle and torso' is the first to go when growth or anything else causes a bump in the road. We are both really excited to see what will come of the next 6 months when summer returns and Ayden Jane can get back on the playground bars, in the pool, on her bike, in the ocean.... She is sooooo craving big muscle work that I am just having a hard time keeping her going. We are adding in pedaling a bike, roller skating and other play skills that are age appropriate.

One thing we both agree on is that we have gotten away from some of the fine motor work. Typically that is taken care of by an OT, but Jen is awesome and handles it all. We will be back to working on cutting with scissors and learning to trace and write letters. Ayden Jane's sensory needs just sort of over powered the fine motor work the past couple of months. It was interesting when Jen was assessing things today how willing to work ridiculously hard Ayden Jane is when she is working large muscle groups. Then when it was time to check those OT skills she becomes a master of avoidance. Yep, she will do a hand stand against the wall until she can't hold herself up anymore, but try to get her to trace an 'A' and she will turn into a silly kid who will do anything other than what you want.

We have some plans to continue to address the sensory needs. (Hopefully we can get her to keep her clothes on) I am thinking they are going to be long term.

Anyway, we have a plan for another great 90 days.

Use It or Lose It

I am really not sure what is going on with Ayden Jane but I do think there is an element of 'use it or lose it' with her. We have just finished a great, relaxing Christmas break with zero therapy. Yep. ZERO. It was too cold so horses was cancelled 2 weeks prior to the holidays and then we had the 2 weeks over the holidays off. A month off the horse. Our PT always takes the 2 weeks over Christmas off to be with her own sweet ones. I even allowed myself to not really do our own home therapy. Ayden Jane looked awesome right about Christmas and I just got a bit lazy.

Around New Year's weekend I noticed AJ's posture looked poor. Her belly started sticking out again, she began hyper extending her knees again, W sit came back with a vengeance... Not that these sorts of spurts are entirely unprecedented, but it was such a huge swing.

I knew Jen was on her way to save the day today. She took one look and agreed her belly is/was completely turned off. It is like the tone just shuts down even though the muscles are all still there. I still don't get it. grrrr. Anyway, when Jen came through the door the first question from Ayden Jane was, "did you bring mr. potato?" (okay, I know that is irrelevant but hang with me.) The next thing Ayden Jane said was, "you bring more tape for my legs?" She hasn't had her legs taped in at least a month, but she asked for it, got the blanket to lay on (just like we did it the first time) and hopped down on her belly. She was hilarious after the legs were taped just watching how she loved the feel of her legs/body with its new support. By the end of the hour her belly looked a bit better. Then she was wild woman for the rest of the night, climbing everything and getting LOUDER by the hour. She went to bed easier and happier than she had been in days... It was like she had regained control of her body and was 'centered'.

So, after 3 days back at school, returning to horses, speech therapy and PT, AJ is more energetic. It really is like activity and energy breed activity and energy for her. I am guessing it has more to do with neurology than anything else. She has made amazing neurologic connections for a kid with PWS. This is shown in the fact that, most of the time, her tone is good, her motor planning is great, her balance it good, she is doing great in the speech area, she is not delayed cognitively, ... I guess, somehow, those pathways just need constant activation or they are still prone to 'turn off.' Maybe someday she will get beyond this, but for now, there is no more getting lazy!

I am definitely going to have to enroll AJ in some activities as she gets older. I think either swimming or gymnastics are my best bet. I am a bit biased toward swimming due to cost and proximity, but not sure I can find much for a 3 yr old. I guess to the gym I go to see if there is anything that will work for her and our budget.

Frigid Temps. and the NEED to get OUT

Being that we live in coastal SC, we are mostly warm weather people now. Occasionally, the cold northern air creeps down this way and we are always completely ill prepared. It is just hard to spend money on extra warm clothes... that we wear a week or so in the course of a winter. Let alone, convince Ayden Jane that such layers should go on her! She still fights the light jacket with a passion. She much prefers short sleeves and in fact, would skip the whole clothing thing all together if she had an option. The result is that we just become house bound like we have this week. My solution? Last night we headed to Leaps-n-Bounce. It is basically a playhouse of big inflatable jumpy houses and slides. Mckenna was awesome and played with AJ for about an hour and a half. They climbed the giant slide and slid down over and over. I let the 2 of them head off for the first half and then I joined in for the second. We all had a great time and warmed up quite nicely. Wow did Ayden Jane need that trip!

Today we had PT. Jen was happy with what she saw considering the recent road trip and what AJ looked like after the last one. I told her the 2 new things I am noticing are that AJ is playing with tiptoeing a lot. Not that she has to, or does it in a way that raises new concerns, just having fun playing with it. The other is the extra amount of falling from leaning on (melting into) everything. She also falls off the edge of things a lot, like the booth at a restaurant.... Sounds like body awareness. We are guessing AJ maybe growing again and trying to adjust. Although, tonight after PT and a nap, Ayden Jane was a wild woman. I am beginning to wonder if we are headed into another spurt of some sort. I am not sure I am ready for 2 weeks of wild woman. I guess I will know for sure in a couple of days.

Jen is working hard on some core things for AJ. Jen now combines fine motor, balance, core... so much that I am not totally sure of her focus sometimes. Today she had AJ do a lot on the ball. One activity she had AJ lay back and get some pegs for a tower on the floor behind her. Then made her use the abdominal muscles of Jen's choice to sit up. I am not sure I could do it. No complaints from AJ though. She just threw herself back to get the next ones... Also working shoulder girdle with some prone reaching on the ball, definitely not AJ's favorite. Finally, Jen had AJ stand on a wedge that can be blown up, or in this case deflated a fair amount. It is bumpy which AJ loves but is definitely hard to balance on. Of course, Jen had her do something with her hands while on it, in this case string some beads. I had to chuckle because AJ would do great but begin to struggle with balance a little when she added talking. Brings new meaning to the saying, "can't walk, talk and chew gum at the same time."

So what does the possible beginning of wild woman look like? Well last night AJ just did not sit still. The night before she had been to leaps-n-bounce, then went to school all morning, had PT after school and a nap. She then proceeded to climb all over and wrestle with the big kids endlessly. She pulled out nearly everything from the closet, played with toys for moments a piece and managed to get into things quicker than we could notice. She was also spotted doing things that are a bit dangerous. As I began this post last night (which I had to stop to put her to bed) I turned to see her climbing on top of the exercise ball which she had placed on the sofa! I asked her what she was doing and she told me she wanted to bounce high. Of course, she had not considered the landing!

With all the craziness, though, she has sort of 'found her play zone' a few times. For a bit last night after all the big kid wrestling and a trip to the play place she settled for a little while (before attempting to launch herself off the sofa). It is really cute to listen to her. She was playing with her Noah's Ark and the animals. She was talking for them and making up all sort of things. It really reminded me of Noah at that age. He played with corps men for hours. We would hear conversations, sound effects....

Changing and growing so much. Maybe we will be lucky and this will be a smooth little spurt.

Language/PT/School

First language: Ayden Jane has become more imaginative, or maybe she can just now express her imagination. A few days ago AJ and I were out back playing and she asked me, "mom, you want to play a game?" I, of course, told her I did, although between you and me I was not too interested. Ayden Jane proceeded to ask me if I wanted to play a new game. Now I was interested. She began describing the game and making up rules and things to do. It did not make too much sense, but it was amazing to watch and listen to her create something and to be able, at least to some degree, explain what was in her head.

Next physical therapy: Jen was much happier with Ayden Jane's posture this week. (I have been too) Although the tape on her legs only lasted a couple of days, the benefits seemed to last longer. Ayden Jane had turned on the tone and pretty much kept it on. So Jen's plan was to not tape her this week and see how things went with our up coming trip... Part way into therapy, however, Ayden Jane asked her, "Jen, you brought you tape?" Jen told her she thought it was in her car and asked her through a series of questions if she wanted the tape on her and where. Ayden Jane was asking for tape on her legs. I believe this is a bit odd as Jen was surprised she would ask to be taped. Ayden Jane does seem to have a good ability to tell in her own way what she needs though. After taped, she again played with her balance a bit and gave Jen a laugh. Then she proceed to do a great job in therapy. I think my favorite was when Ayden Jane again became LOUD like she did after last weeks tape and Jen was able to witness and get a good laugh out of the tapes side effects.

So the plan for the trip this weekend is that we will leave about 12. I will take Ayden Jane to the park, bounce on our trampoline, go swimming... whatever works that morning to wear her out and be sure she is as 'on' as possible. Then she should nap at some point on the trip. About 2 1/2 to 3 hours in we will stop and stretch our legs... Then on to the last hour of the trip. We will be on a soccer field for about 2 1/2 hours so I will be sure to bring a few things for her to do. We will get dinner before heading back and it should be her bedtime by the time we are on the road again. Sunday we will know if car seat time is a major problem or if it was just the quantity and timing of the last trip that caused the problem.

Finally, school: Another student in Ayden Jane's class had a birthday this week. It came with cupcakes... for the kids. I had put some grain free mini muffins in the freezer that Ayden Jane calls cupcakes and told the teachers to give her 2 in place of whatever 'treat' was brought. I hear it went great. So far so good on that front. I have found the easiest place for problems to occur is in the liquids. I am not sure what to do about that, but I may end up sending in some almond milk too. Ayden Jane just does not really like water, okay she barely tolerates it without 'spiking' it. It is amazing how little of something I can put in it and she will be thrilled. Trying to get the teachers to understand that AJ can drink water with a dash of juice, not watered down juice. I guess I should send in a Tbs. and tell them she can have this much juice in her water. Hmmm. Just might try that!

Taping

Jen taped Ayden Jane's legs today in physical therapy. It was very entertaining to watch AJ play with the new feeling of tone and balance after the taping. It definitely pulled the belly in though. This is what it looked like from the back.

And from the front, although as you can see it was hard to get AJ to stand still.

It is was a good day of PT and Ayden Jane's static balance is really improving. It is so interesting how tone effects her. She has the full ability to stay, 'turned on' she just doesn't. Weird.

As for her speech, we are still struggling with a pretty bad stutter. Not sure what to do to help it resolve, but I believe it will take care of itself in time.

Hanging Belly not the Belly's Fault

Ayden Jane is down off this last spurt and we are seeing more great things. However, it seems we also have to deal with a bit of fall out as well.

I e-mailed Jen yesterday to give her a heads up that Ayden Jane is really sticking out her belly. When she is just standing still it looks a bit like a gymnast having just finished a routine and throwing up her hands and arching her back. I am really not sure sometimes how she does not fall over! Now as long as she is active and moving, she lines up much better, but when she is in a static stand, well, YUCK is the best way I can describe it.

So we had therapy shirtless today and Jen tried to address the belly. She was not happy at all with the posture! She tried cueing some muscles... and ended up using kinesio tape on AJ's belly. Ayden Jane calls it her super belly. Then Jen was still not able to get AJ into the correct posture so off went the long pants! Jen found the root of the problem was in her knees! I certainly did not think to look there! Basically, when standing still AJ is hyper extending her knees and 'hanging' on her ligaments at her hips for stability instead of keeping muscles turned on.

Okay, stand up. Lock your knees, let your hips fall forward relaxing all belly and upper body muscles and let gravity take over. Yep, a bit like being 9 months pregnant. Now, bend your knees just slightly so you have to turn on your quads. Amazing how everything else turns on isn't it? So Jen did lots of things with AJ that made it so she had to keep everything turned on. We had AJ in a big saucer standing on a stool so that she had to keep it all activated to keep her balance as she reached for a toy or put together pegs. She had her stand with one foot up on a couple of books. She even had AJ roller skating through the house.

We are going to give Ayden Jane the week to sort out her 'new' body from this last spurt and then Jen will decide if we need to block her knees. I don't really know what that means, but it has something to do with not allowing her to lock out her knees... It has happened before that as Ayden Jane goes through a growth spurt it takes a while for her body to sort itself out, so we are hoping that is all that is going on. I am so glad that I have Jen to keep such a close eye on AJ. She manages to correct things before they become too much of a habit or are able to cause any structural issues.

I will try to get some video of Ayden Jane tomorrow. She has the most adorable little gallop now when she goes from place to place and her run is looking good. Words just can't do them justice.

Good Stuff

Ayden Jane has been great since the swimming. She has laughed way more than whined or argued. Huge improvement. I really like this kid. I am looking forward to PT this week to see what Jen thinks. It is always the ultimate test because Jen will sort of stretch her little muscular and neurological systems and get them working their hardest. She has AJ do things that are demanding alone and also gets Ayden Jane to combine challenging skills in one activity. If AJ can begin to do this again without losing quality, getting frustrated or trying to quit, we will know we can breathe deep for a little while. The big sensory wave will be over for now. If you have been following for a while you will know that these are a pattern for Ayden Jane. I would say that the intensity varies and the length between them varies. The seeming constant is that, for AJ, they seem to always last about 2 weeks. (which also happens to coincide with the amount of time I can last before thinking I can't do this anymore) Also, we usually see some sort of big gain when they pass. The gain is getting harder to see, likely because they are more complex. In the past, gains have been easy to measure. Suddenly she can jump. Or suddenly, she is using nearly complete sentences. Or suddenly she was able to put together every puzzle in the house. It seems to me that there is definitely a cognitive spurt going on as her conversation continues to surprise me, but I will be interested in what Jen 'feels' in her.

She is not doing great with the time change, but luckily she is back to being at least a bit patient. This morning she woke up about 5:30 (which was 6:30 in her own time clock) and wanted to cuddle. This is common in the morning and she just crawls in and falls back asleep. Problem came when, at 6:30 she wanted up for good. (Of course, to her clock it was 7:30!) Well, I turned on Clifford and she was content to sit and watch and chat until nearly 7 when it was time to wake Mckenna. I think we will use this pattern until she gradually shifts her clock to line up with the rest of the house.

Funny stories: Ayden Jane still likes to use her 'little potty.' It is a Winnie the Pooh potty we got at Walmart and it has a handle that when you 'flush' says, "all done," followed by the sound of a toilet flushing. Ayden Jane will often bump it as she sits down. She responds, "I NOT all done." Secondly, during this last little sensory spurt Ayden Jane decided she would only wear her 'stripey' pants. They are a pair of pants/leggings that are multi colored stripes. So one day last week I HAD to wash them. I think we were on day 3 at the time. So, Ayden Jane refused to choose any other pants and just wore her shirt, underwear and shoes while they washed. Yep. She insisted that the shoes go on because she was not all dressed without them.

Oh, yes, today she decided her green pants were a good idea. First day without stripeys in a week! Hallelujah for this to come to a close and may we never be without a pool again.

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!

Swimming

Of course we all know that swimming is great for everyone. It is low impact great exercise. Ayden Jane has loved the water from the beginning and we have always felt that we see benefits both in strength and, quite frankly, mood after she has been swimming.

Let me start by describing just what she does when we go swimming. She HATES to wear water wings/swimmies. So, we just let her go without them. She has become very comfortable in the water with a pool noodle. It is the best $1.50 I ever spent. Last night we went to the pool and Ayden Jane starts by jumping right in. Yep, before I even have a chance to put things down she is in the water. She hold the noodle as she jumps and pops right up. She loves it when we jump in and 'bomb' her. Shortly after she will take a hold of her noodle and swing one leg over to ride it like a horse. Once in this position she will balance, kick with her feet and paddle with her hands. She actually moves across the pool pretty well this way. Her latest trick is to 'swim' to the rope, throw her noodle over and head into the 9 ft! She then thinks it is funny to flip over her noodle like a somersault. She lets go and enjoys the weightless feeling, yes making me get the bigger work out. She usually goes wide open for 20 to 30 and then is content to play on the steps, swimming out and back without her noodle. Jumping in and swimming to me... It is just a calmer pace.

Here is what was new. When I picked up Ayden Jane from school today they were thrilled to tell me what an awesome day Ayden Jane had. She apparently was talking up a storm and over all less shy. They saw a real difference in her. Definitely have to try this experiment again. Of course, the problem is the pool will be getting cold soon!

School, Stitches and PT

Let's start with school. Ayden Jane absolutely loves school. She asks in the morning, "i go my school?" A yes answer always brings big grins and excitement. She names several friends from her class and when asked what she did at school always answers, "we sing songs at school." It is so fun to pull up through the pick up line and watch her grin as she holds her teachers hand and walks down the steps. (She fought the hand holding at first). Her teachers tell me how independent she is. She apparently does not say much at school, but her vocabulary is blooming at home. She is learning so much just being in a new language rich environment. We had a parents get together last night. The director stopped to chat with us and told us how much she loves Ayden Jane's great little personality. She is a woman who loves and independent streak and so the two are two peas in a pod. I feel so blessed to have Ayden Jane is a place that already loves her to pieces and it is only a couple of weeks into the year!

On to stitches. Ayden Jane decided a few days ago to climb into her crib to get something. She managed to pop open a stitch... She came to me and said, "I need a go to the doctor." I did not catch on... Finally, I noticed the blood under her chin and on her neck. It was not too bad so we just decided to let it alone. Let's just say the scar will not be as pretty as it would have been otherwise, but it is up under her chin where no one will see it anyway.

Now for PT. I think we are finally coming off of the last wave of sensory whatever AJ goes through. She is much easier to deal with, can keep her clothes on, can focus, is not clenching every 10 seconds, is not as quick to yell, is not running into things or going so fast... is happy and more under control. Jen said she did great in PT. Jen brought back a bucket of beans that Ayden Jane used to love. She had her weighted and standing in them reaching, bending, doing matching puzzle things... Ayden Jane loved the beans. We decided maybe she needs a sort of pool of beans/rice mixture to sit in when she needs to calm down... Maybe between the trampoline on it's way, a nice bean bucket and a new weighted blanket, we will be able to ride out the next storm more smoothly.

On the flip side, language, language and cognition, cognition seem to be the results of the latest spurt. The more she can say, the more we find out what goes through that cute little head, the more we see how funny this little kid is. The sense of humor astounds me. The confidence she has regained now that she is back in control of her little body (for the most part) is a little scary though. I am sure it is the cause of her return to climbing. I have found her in her crib, scaling her dresser, on the counter, standing on her rocking bouncing horse, just don't even look at her on the bleachers at the Kayla's volleyball games, trying to walk curbs like a balance beam, standing on her rocking chair... I think you get the picture.