Permobil Head Array Prototype - Update

Since the beginning of February Caleigh has been using the new Permobil head array. In that amount of time we have done quite a bit of tweaking and customizing for Caleigh.

About one week into using the new system, Caleigh began to throw her head back against the forward switches extremely hard. It was puzzling and honestly we did a lot of guessing as to why she was doing it. Then we wised up and actually asked her. Turns out she didn't know why it was happening. She said it was muscles. She didn't want it to happen. It didn't feel good. She didn't think that she had to hit it hard to make it move. So we blame dystonia, and an excited girl that gets to drive her chair all by herself.

With this issue in mind, we met once again with a person from Permobil to brain storm a solution. One week later we met again and added a foam rim to the main headrest. This has helped a lot, and now Caleigh seems more gentle when picking her head up. The final version will have some padding to the molded switch areas.

The molding of the switches was worked on, as well as tightening everything up.

An issue that we have had with the head array is probably pretty unique to Caleigh herself. There are some loose threaded areas that we constantly tighten to no avail. When loose this make her left side "resting spot" slide down, which in turn hooks her glasses, which then allows her to get her head stuck underneath the head array itself. Just call her headrest Houdini. Whatever the situation she will find a way to wrap her head around it. I've been told that those threaded or not so threaded areas are being addressed.

Another interesting occurrence happened on Sunday. I wet Caleigh's hair down and styled it like I normally do, and then put her in her chair. We were going to do some yard work, so I figured she could drive around a bit while we did that. The day was pretty humid as well, but the moisture off of her hair was causing the proximity switches to become activated. Basically the chair was driving forward on it's own. The super amazing engage/disengage button located right behind those switches started acting up as well. It was disengaging Caleigh's driving anytime she put her head up to go forward. Frustration set in quickly and we ended up taking her out. So, the moral to this story is that electronics do not like moisture, no matter how much. Lesson learned.

The amount of time that Caleigh can hold her head up and drive continuously has really expanded. Especially if we are out in an open area, she will hang on and keep going. 

Overall, this new head array has been a huge improvement for Caleigh. With the anticipated changes, I'm certain that this is the driving system for her. 

Enjoy this short video. These recorded days are before we added the foam for padding.

Spring Happenings

Since Saturday Caleigh has been feeling better. Eric made it through his surgery with a lot of rest, ice and only one day off of work. I made it through taking care of both of them.

In a nut shell, I think that "something" we're dealing with is hormones from the premature adrenarche. Signs are pointing to a menstrual cycle sooner rather than later. Having your four year old deal with hormonal issues just doesn't seem right, but just like everything else we will push through and find a solution. For some reason I don't feel incredibly worried about this. There's a plan of action in place; maybe that is the difference.

 
This weekend we went to our local Make-A-Wish Run for Wishes. Caleigh's cousin, Avery (who is doing great by the way) just received her wish a few weeks ago so this was perfect timing. Caleigh and I had a great time getting our exercise in for a good cause. 

Caleigh and Kendall got to hang out at a friend's birthday party this weekend too. They are just too cute together. Seeing Kendall's awesome manual chair gets me excited about Caleigh's. It should be in soon. We've been notified that insurance has approved it.

We heated the pool and swam most of yesterday. The water is getting warmer with the early Spring weather. The temperatures aren't dropping as much at night so it doesn't take very long to heat when we are ready.

Caleigh, just yesterday, really started kicking in the water. Maybe it was because she wasn't feeling great before, but she's warming up. Just because there hasn't been much kicking doesn't mean there has been a shortage of smiles. She is having a blast. Caleigh plainly told me to "let go" several times yesterday because I was holding her arm. I love the little bits of language peeking through.

 In reference to language, we have decided to wait on ordering the PRC communication device that Caleigh recently trialed. There is an ugly lawsuit going on with PRC and an iPad app developer. We were also waiting on a new device to trial before making the final decision. Since the release of the iPad, AAC in general has been tossed up in the air. Nothing in the field will ever be the same, and I think this is a good thing. Another huge contender is Proloquo2Go, which Caleigh has been using for two years to communicate. They have announced plans for a free update complete with a core vocabulary base. The core language system is a huge seller for us and they may be able to fix that one weakness that the first version has. This may mean that we will need to go ahead and purchase a very expensive mounting system for Caleigh's wheelchair. Usually you can bundle this system with a device when submitting to insurance. Since we wouldn't be getting a device, we will need to buy it separately. For this to be successful we will need to have the best accessibility. Whatever it takes. I'm waiting to see what happens in the next few months before making any decisions though. Until then we keep doing what we are doing because it is working. 

That Something

One month after getting new spectacles, Caleigh, again, got new glasses. Confused yet? Long story short, everything that was amazing about the silhouette frames did not work for our dear sweet Caleigh. The nose pieces were spending most of their time in, on or hoovering over Caleigh's eyeball. The loss of an eye wasn't an option, so we traded them in.

Caleigh's new glasses are extremely similar to her older pair. Most everyone can tell that something is different, but can't quite put a finger on it. So far they are working out great.

These past couple of weeks have been a little rough for miss priss. Something is off we just haven't figured out what that something is. She had an infection around her g-button that we treated with a topical cream. That's all better. Today I took her to the pediatrician to rule out an UTI. Thankfully the test was negative, but really it leaves us back at square one. She's been crying at the drop of a hat, and totally unmotivated to do anything but listen to music and play with her babies. She hasn't slept through the night either. Daylight savings, Artane increase, allergies, hip pain, premature adrenache, 4.5 year old. It could be anything. Eventually we will figure it out.

Eric and I have been dealing with our own somethings. I had an "alleged" gallbladder attack a few weeks back followed up with several tests. Nothing showed up wrong so at this point I'm moving on. Eric has had three root canals since December with no luck. Tomorrow morning he will be having oral surgery. We are hoping this surgery will do the trick, and he won't be in pain anymore.

Other than the appearance that we are all falling apart, things have been pretty relaxed lately. We've been able to heat the pool and swim a couple of times, much to Caleigh's enjoyment. In general, we've just been taking it easy and working on feeling better.

The Elks

Last June, we were given a tip by another parent that our local Elks lodge would help pay for equipment and such that insurance wouldn't pay for. Apparently, their giving of choice is to children with disabilities.

When we ordered Caleigh's power chair we were denied a seat elevator and attendant controls because insurance felt that an, at that time 3 year old, didn't need it. Our wonderful DME dealer actually gave us a loaner joystick to act as attendant controls because believe it or not, a 3 year old doesn't know how to drive a power chair the first time she gets in.

So I wrote a long essay about why we felt Caleigh needed those two things on her wheelchair. I got an estimate for the two items. I filled out the long application and sent it off. We got a letter in the mail not long after letting us know that our local chapter didn't have enough money to approve the request. I filed it away and we went on with things the way they were.

A couple of weeks before we went to have the Permobil head array installed, I got a call from the main Elks office in Texas letting us know that the funds were available and they would be contacting our DME to have the elevator and attendant controls installed. So both of those things were placed on Caleigh's chair the day we were working on the head array.

The attendant controls have helped enormously. Mainly in an electrical way; the real control vs. the joystick seems to be a safer option. The seat elevator allows Caleigh to reach any table height, help us check the mail in the mailbox, reach countertops and be almost as tall as Mommy is. The elevator lets Caleigh be more involved in her community and surroundings. Right now we control the up and down of the chair while she is still learning to drive. We didn't want to add another switch since she just started turning left. One new button at a time, but eventually she will be in control.

Many thanks to the Elks for being very generous in donating these items for Caleigh's chair. There are truly amazing people doing selfless acts of kindness everyday. It's humbling and extremely reassuring at the same time.

Christmas in March

Back in December, Eric and I took Caleigh to the Gaylord Texan for their Christmas festivities. Life got in the way and I'm just now posting about our visit. Enjoy your glimpse of Christmas in March....



We spent several hours at the hotel just walking around looking at all of the holiday decorations. From life size ginger bread houses and huge train tracks to gigantic presents and nutcrackers, they had it all.


We decided to skip their ICE attraction, but we did decorate a ginger bread cookie family. Caleigh decided to decorate a mess and then throw her cookie on the floor. Eric and I got to eat spicy cookies....it was a win win for all.









Caleigh had a great time. Eric and I had a great time. We will definitely be doing this again.

Quick Updates

Over the past three weeks, Texas has decided to skip winter and roll straight into spring. I'm ok with the turn of events seeing as I really could care less about winter. So we've been outside, living life and running around like crazy. In an effort to keep everyone up to speed, here's another hodgepodge of quick updates.

For the past month, Caleigh has been all over the place with her dystonic movements. It's exhausting for me and very frustrating for her. Holding on to anything for more than a second just didn't happen. She briefly complained of growing pains in her legs, and generally had a bad 3-4 days in a row around the beginning of February. At one point her dystonia was so strong that her equipment was causing major bruises to her arms and legs. She spent a lot of time on the floor and with us doing stretches. Eventually, Caleigh began to sleep better, but her control just wasn't coming back. That is until this past Saturday. It was like a switch clicked on in her little body. Her muscles caught up and Caleigh's limbs became hers once more. We've been able to take the headrests and homemade padding off of her equipment. She is independently sitting for longer periods of time. She can reach, pickup and hold a paint brush for longer stretches now. She's a much happier little girl.

With this last growth spurt Caleigh has slimmed down and shot up. This past August she weighed 39 pounds. As of today she weighs 34 pounds. I'm guessing this was one of those fatten up to slim down scenarios. All of her summer clothes are falling off of her and her swimsuits are way too big. She'll grow back into the small and mediums, but I wish there was a warning before I had given away all of her 4T/5T clothes. I never in a million years thought she would lose that much weight. Always a surprise. Usually losing weight for kids with CP is a bad thing, but for Caleigh, this seems to be right where she needs to be.

Homeschool is going really well. We are closing in on 11 weeks so far. It really has flown by. Caleigh is still doing art class, weekly library visits and her regular therapies as supplements. I plan on devoting a post specifically to homeschool at a later time.

Caleigh's feeds are now only on for 13 hours a day. That is the shortest time frame that I can remember in years. Most of her feeds are at night with the exception of traditional meal times, three times a day. Caleigh has been antibiotic free for three months now. The bacteria is staying at bay. It's amazing how flat her little tummy can be without the inflammation from the bacteria.

Upcoming appointments include neurology and endocrinology. We are patiently waiting to find out about botox, casting and the status of Caleigh's premature adrenarche.

There are a lot of posts that I plan on adding in the next few weeks, but I wanted to get the medical updates down for now.

Permobil Head Array Prototype

Originally Posted 2-10-12
Updates on Caleigh's new head array coming soon.....

A couple of weeks ago I got a text message from our durable medical equipment (DME) rep asking us if we wanted Caleigh to be a tester for an upcoming head array prototype by Permobil. We said yes, and why wouldn't we? A custom head rest for Caleigh, a room full of experts on her particular power chair; it was a win for us all around. Caleigh is a challenge in many areas regarding access. So if they can get it right for her, think of the people they would get it perfect for.

It's been about a year and a half since we got Caleigh's power chair. In that time we have tried numerous switches, joysticks and access methods; with none quite right for her. Another company's head array is what Caleigh has been using since last June. As far as I know, Permobil didn't have their own head array....at least until now. Caleigh's endurance has gotten higher with this method and she is gradually getting better directionally. The issues we faced seemed to be hard to overcome with the setup we had. We weren't able to add in a left switch because Caleigh keeps her head laid on the left of the headrest; it's her resting spot. She had trouble holding the switches down for extended periods of time due to their placement within the headrest. Her head would slip and fall off of the left lateral constantly. Reverse wasn't even in our outlook. There were quite a few electrical issues as well, and the back of her chair looked like a bad Christmas light joke. I was always afraid of hitting something the wrong way.

Yesterday, we spent almost 4 hours at our DME office meeting with two of our regular people and three individuals from Permobil, each with their own expertise. Caleigh was a champ, and patient through it all. We brought her KidWalk so that she could walk around while the installation and adjustments could be made. There was a lot of grown-up talk; so we were very proud of her.

I won't go into too many specifics, mainly because it is all very technical, but I will say that this head rest is just what we have been looking for. The maneuverability is amazing. The materials used are durable, for our strong girl. You can leave some areas loose with a little play or you can lock it down tight. The rats nest of wires in the back are now down to a minimum. The padding material is really nice and it seems very easy to clean. It also seems to be lower profile than the previous one was. There is actually two switches in the main pad. So Caleigh doesn't have to hit just one spot to go forward. The bones in the back of the head have been taken into account for this feature. Eventually these buttons can help Caleigh with veering a direction. There is an awesome power button, conveniently located, that will disengage the head array without shutting the whole chair off. I'm in love with that feature....you know, in case Caleigh is headed for a group of innocent toes.

There are still a hand full of changes that our suggestions and putting Caleigh in the chair brought up. That's what a tester does after all. The overall look will be cleaner and more polished, but frankly we love how it looks already.



Caleigh's left turn switch is now on her left arm rest. It is a very sensitive proximity switch, and currently she is loving going left; something she hasn't been able to do for over a year.

They added two pads on the left side for Caleigh's rest spot comfort. These currently have switches in them. Because of her need for something like this, they will be making pads without switches wired into them. You can see where her head hangs out in the photo below.

There are so many little, intricate and customized things on this head array already. The final product will be out sometime in May. At that point we will get to trade in the prototype for the real deal. While we were waiting on the final touches, Caleigh told everyone "thank you" and "I love it." In the one day that Caleigh has had this head array, she has driven her chair for longer and more successfully than she ever has. She is thrilled with the changes and so are we. I want to thank our DME rep for thinking of Caleigh when she was asked if she had anyone to try it out. It was a great experience learning about the process and specifics of the head array. We can't wait to see what the next few months brings for Caleigh.