Intensive Physical Therapy - Week 1 Re-cap

I'm in LOVE with this therapy. If I had my way, I would drop everything else and do this every 6 weeks. Financially it won't happen, but we can always dream!

The very first day Caleigh was a rock star. She did everything asked of her and the 3 hours went by super fast. We came home and she took a 45 minute nap. She was up, wired and ready to go. She didn't settle into sleep until 10 that night which is not her normal and then she was up and down all night long. Overstimulated is the word here.

The second day was rough. Caleigh was tired and cried the majority of the 3 hours. She still worked and did what was asked of her, but she didn't do it without a fight. To top off the 3 hours of an exhausted 3 year old, Caleigh and I came out to the van finding a very flat tire. We had to wait about 30 minutes for road side assistance and then we had to drive an hour back to the house on the spare. The whole day was terrible. We went to bed, all of us, at 8:30.

After much discussion about the importance of sleep; Caleigh got her zzzzzz.

The third day was much better with only a few 3 year old tantrums. We started to notice more strength and control. Up until this point Caleigh has been using her extension tone to move. The whole point of this therapy is to teach her to use her flexors which have no strength because her extensors have been taking over. Working around the constant movement of the Dystonia can be done, but it takes a lot of motor planning and Caleigh is getting faster everyday. You can see her thinking things through and then making the movement. It's wonderful and heart wrenching at the same time.

Day four was just as good. Caleigh's head control seemed better as we started working on sitting unsupported. The suit in the photos is called a Thera-Suit. You can read more about the suit and therapy here. Basically the therapy is like going to the gym with a personal trainer everyday. Caleigh does reps of every movement which are increased daily. She lifts weights with her legs and the weight is increased daily. Caleigh lifts her head up off a wedge, and with the proper coaching and support, extends her arms out in front of her to help pull herself to sitting. Usually she pulls her arms back (tone kicking in) while pulling her head up and it just doesn't work. She pushes through her shoulders instead of letting her elbows collapse while in an all 4's position. We are also working on integrating some of the reflexes that seem to be hanging on by a thread. All completely normal PT activities, but the intensive part is really the key here.

The fifth day, yesterday, was just as wonderful. Caleigh is stronger by the end of the first week. I on the other hand....feel completely exhausted. The driving and the learning is tough, but honestly if Caleigh can get up there and do anything asked of her there really is no reason for me to complain. Caleigh smiles when we talk about going everyday. She enjoys the work and she is super motivated.

Last night we sat down to watch Dora and practice sitting.
This is what Caleigh did....

This is all her muscle working. Usually, Caleigh's tone holds her up when she is excited and then she collapses when her tone stops. This is just her pushing up using the right muscles. She relaxes and rests often but can still push back up. I'm thinking if we get independent sitting out of this 3 week stint it will be well worth it. We are very proud of our girl!

Once you choose hope, anything's possible.
~Christopher Reeve

What Santa Brought

For Christmas, Santa brought Caleigh a Beans & Rice table. Santa was clever and decided to use beans and rice instead of sand and water. I'm not sure if the table manufacturing people know this or not, but sand and water usually end up in a mud-like mixture. Yuck. Santa knew how much Princesses don't like to get dirty.

Caleigh stands at her table everyday and plays with the boats, shovels and pots. Sometimes we do it while she is in her KidWalk, but most of the time she does it while we are helping her stand on her own.

It's been a wonderful tool to making standing fun. Santa might have been a little overzealous when he brought the beans and rice for the table. Mommy and Daddy have been eating a lot of the left over items since Christmas. Super fun and tastes good too!

It's been over a week

Since the last time I posted we had a very dear family friend pass away. She was my second mom while I was growing up. She would tell me when I was doing wrong, acting silly and would smile the biggest smile when I did something right. I felt she was proud of me and I will never forget that feeling. I love her dearly and will miss her more than I even know right now. It's been really hard for so many reasons.

Which leads me to my next thought. Self-Involvement. I have been so self involved with our life, and what is best for Caleigh that I feel like even though we go to the store, library, zoo, therapies; I feel like we aren't paying attention to what is happening around us. I forget to call people back. My email is full of messages from other parents needing advice. Getting though the day to day is exhausting and by the time I go to bed all those things are still waiting and weighing on me. I feel inadequate lately. I feel like I couldn't possibly add another person or story to the line-up. I could have been there more for our friend while she was so very sick, but instead I filled our time with the mundane daily activities we have wrapped ourselves around.

Showing up in other people's lives is definitely something to strive towards in the new year.


Since I last posted we scheduled an orthopedic appointment for Caleigh's hip dysplasia. It's around the middle of February. We've been stretching Caleigh's hamstrings while supporting her hips, but honestly she's not tight at all. Her legs allow us to stretch all the way with nothing but normal resistance. So we may be blaming her dramatic growth spurt this past year. We'll see.

Since I last posted we have sold 5 prints in my Etsy store: made of Gray
Every little bit helps and I'm still excited to be waving goodbye to my art.

We also made a bit of a discovery in the last week or so. Caleigh can add. That is addition. Math. Right now she knows 1+1, 1+2, 3+2, 2+2, 3+3, 4+4, 5+5, 5+1, 4+1.....just about all the under "10" questions. I was a bit shocked when I first went through the basics with her so we did it again and she got it right....again. Thank you Dora & Sesame Street because Lord knows I didn't teach her that!

Caleigh has also been doing sight reading with her preschool studies. Each month we learn three new words and we have a book using those words. I hold the book, the iPad and Caleigh. I need an extra hand, hence the lack of video on this one so far. I read the words that she doesn't have in front of her on the iPad. When I get to one of the 3 words Caleigh will touch it and the iPad will speak it for her. Essentially, she is sight reading, it just takes longer.

This past week during speech therapy, instead of touching the word 'Love' on her iPad Caleigh decided to say the whole sentence "I love you." with her very own voice. Once during the story and then again when we asked her to read the page in front of her. So she said it and read it twice.

The bathroom remodel isn't going as smooth as planned. There are a lot of issues and hierarchy to go through. The company didn't show up 4 of the 5 days last week, but honestly after the week we have had, I don't care. You pick your battles in this world. Time is precious and so far no one has been paid a penny. The bathroom will get done and it will be done right, but at this point I'm not losing sleep over it.

Caleigh's intensive physical therapy starts tomorrow morning. I'm ready to get things going and we are very excited to see how it goes.

Hip Dysplasia & PowerChair Update

Today I got a call from our neurologist office. They are the office I asked to put in the order for the hip x-ray. We needed the x-ray before starting intensive PT on the 24th of this month. It's a good thing we were required to get that x-ray. Apparently, the x-ray shows 50% left hip dysplasia. My first thought was "isn't that what large dogs get"? I had a friend once upon a time with a dalmatian. Long story short it had hip issues. I got a crazy picture of Caleigh with black spots hobbling along with 4 legs. Call it shock I guess, but nevertheless, it was an interesting reaction to such news.

So, it basically means that Caleigh's hip is on it's way out of place. Right now it is not dislocated. I've read all about the hip problems kids with CP can have. I guess I was naive to think that none of those things would happen to Caleigh. We move Caleigh from place to place all day long. She moves herself constantly. She isn't in a stagnant positive for more than 30 minutes at a time. We do weight bearing in standing constantly. Our therapists are checking for these things all the time, but Caleigh's hip isn't doing the typical clicking that happens with hips being dislocated. So what gives?

We are working on an orthopedic appointment to find out more. 'Google University' says that the fix for such a thing can range from just watching it, bracing it, surgery and then spica casting. We will just have to see what the doctors have to say.

The new hip information won't be a problem for our scheduled intensive therapy. It's good information for the therapist though. Certain positions can be altered to accommodate the hip. Our regular PT is going to show us stretches that can help during our session tomorrow. For now, Caleigh acts like nothing is hurting her.

This past week the wheelchair people came out and brought the new bracket for the current joystick. We re-arranged this and that and they left. They didn't exactly bring everything that I had asked for, but little by little things are getting done. I will say that this bathroom remodel has reminded me just how little people communicate effectively between each other even when they work closely together.

tiny side note:
Make. A. List.
Your life and mine will be a lot easier.

As soon as the wheelchair people left I could tell that we were at a crossroads with Caleigh and the joystick. The positioning that should be ideal, just isn't. Caleigh tends to pull in towards her body making the chair go left...and only left. Her fingers fall off the joystick easily over and over. She can't go a certain direction on command and stopping is dictated by her tone. She seems to sit up better with the joystick though.

With trying the joystick for over a month now; I thought it might be a good time to re-visit the proximity switches. So Eric and I spent our semi-snowy Sunday morning moving things and hooking up the switches for Caleigh to use. We mounted the switches under the tray and put a sticker on the top of the tray where Caleigh will need to touch.

I have to say that all of the above complaints about the joystick aren't an issue with the switches. The switches have their own issues. The main one is that Caleigh tends to look at the tray making sure she is on the "star" that she wants to be instead of watching where she is going. I'm hoping that after the placement has been the same for awhile she won't need to look down so much. Caleigh can stop fairly quickly and if I ask her to go a direction she generally does.

We've asked for a vest of sorts instead of the chest strap shown in the picture above. The strap has to be way to tight to hold Caleigh up. The vest should help hold her shoulders back as well. We also need to lower the foot plate for a better leg position. Caleigh has apparently gotten a bit longer. Always little adjustments to be done. For right now, we will stick to the switches and hope that Caleigh's driving skills improve.

Early January Happenings

This month, so far, is flying by. Yes, it's not even a week in, but it feels like it should be February already. I've been digging through the to-do list and fortunately things are falling off of it quickly. From appointments, supplies and therapies; there is a lot to get done before Caleigh starts her intensive therapy.

made of Gray has taken off to a great start with several purchases. It's really exciting to get that email saying there has been a sale. It makes me giddy and excited about art once again. Who knew?

Caleigh is doing great. She is done with her round of Xifaxin for bacterial overgrowth. Her tummy is flatter and her symptoms are better. Caleigh's stool is looking better as well.

Today I took Caleigh to get lab work done and to get an x-ray of her hips. The labs are our normal every 6 months tests. We check for vitamin deficiencies, electrolyte balances, liver numbers, etc. It's a lot of blood to take for such a little girl, but it's just twice a year. We did the hip x-ray to make sure there isn't any sublaxations before we start the 3 week intensive therapy. Just a precaution that is required. This time around I was talking the whole situation up. How we were going to take beautiful pictures with a large camera and how the nurse was going to squeeze her arm to make sure she is healthy. Today was a milestone. Caleigh didn't cry, wince or object to anything that we asked her to do. This coming from the girl that would freak out the moment someone looked like a nurse or doctor. I praised her like crazy. We talked about what a big girl she was. How brave she is and just how good of a girl she is. Caleigh grins from ear to ear when we talk about it. For something so non-enjoyable, her understanding of the matter made it much more acceptable than in the past.

We've also gone up on Caleigh's Artane dose once again. We only have 2 more increases before she is at the full dose. That's one month away. I talked with our neuro's nurse in length about Caleigh's eyes crossing. She said that there is usually drastic improvement at the full Artane dose and of course the older the child gets the stronger the muscles of the eye get. She agreed that we should wait and see how the medicine helps her eye movements.

And finally, the bathroom remodel...it's still happening. They started the week of Christmas but with all the holidays they really haven't been here everyday. We are on the down hill now. I'm tired of the dust and the strangers coming in and out of our house, but I'm excited to see the results. I'll post before and after photos when things are all done.

made of Gray - Grand Opening

Here it is.... my grand fundraiser for Caleigh. This idea isn't new nor was it always for Caleigh. I've always wanted to sell my art and creativity. Up until now, though, I haven't had the strength, time or serious reason to start the endeavor.

Caleigh is the reason.

My 2010 "To Do" list included enrolling Caleigh in an intensive physical therapy program. This program runs for 3 weeks, 5 days a week, 3 hours a day. Luckily we will not have to travel far for this therapy. There is a clinic about 45 minutes from our house. A year ago the closest clinic was in Houston which would have made things more difficult. The 3 week intensive program is $4950. This isn't some hokey "feed off of special needs parents' hopes and dreams" kind of therapy. This is real physical therapy. Therapy that can help strengthen Caleigh's muscles and in turn help her help us more. The cost comes down to around $100 an hour, which really isn't an obscene amount in the world of therapy. Ultimately, we would love to do this program 4 times a year.

I've visited the clinic twice. One time to watch a friend's daughter during her session and the other time I took Caleigh with me for an evaluation and to get a feel for the therapist working with her. Everything in my entire mommy being tells me that this is something we need to try for Caleigh.

I was able to convince our insurance company to make a network-gap exemption so that the therapy is considered in-network. By our estimate, our insurance might cover one of these 3 week sessions. Just one, and that is an iffy at this point. We are allowed 60 visits a year. By the time we make it to April we will be all out of visits with our regular 2x a week therapy and one intensive session.

Caleigh's first session starts January 24th.

And so, made of Gray was born.
The etsy store will carry my photography art and any other creative ambition that may come along.

The photograph series 'Pola' originated from my Bachelors of Fine Art senior exhibition. The manipulation of a 3x3 Polaroid, water destruction and digital output of the final product 22x22 {30x30 framed and matted} larger than life imagery took over a year to complete. The series of 12 images has been shown in several local exhibitions and holds numerous emotion for me as an artist.

There are also prints of the originals for sale in 5x5, 10x10 and 12x12 sizes. This allows a varied price point and a chance to have a print of the original.

Our house is full of my 'Pola' series. 30x30 framed and matted Polaroid manipulations hang in Caleigh's playroom, my office and our family room. They are huge and I love each of them.

This is just the first series, more of my art will slowly begin to appear in the online store as I go through my archives. So if this series doesn't tickle your fancy; another set might just do the trick.

To celebrate the Grand Opening of made of Gray, enter the coupon code: grandopening2011 at checkout for 25% off your entire order.

As I come up on 4 years of blogging it's evermore apparent that we have been truly blessed with the best support imaginable from our family, friends and readers that truly love Caleigh and our family. We can't thank you all enough for everything you have done. Your support means the world to us.