Caleigh's Corner

Southbound 35 - Morgan's Wonderland

2012-05-25T04:00:00.000-05:00

Last week the Gray family loaded up and headed south. Our trip for Caleigh included a little R&R on the River Walk in San Antonio, a day at Sea World, and a short stay in Austin with friends. The big reason we made the trip was for Caleigh to be able to go to Morgan's Wonderland.

After stops, eating and taking the scenic route, we made it to our hotel in about six hours. Caleigh did fabulous. This girl is made for travel. She rolls with the flow beaming with excitement the whole time.

The first night we went out on the River Walk, and found a patio to eat on where Caleigh quickly made a few feathered friends. That night we all crashed around 10pm. It was a long first day. The River Walk, by the way, is just impossible with a wheelchair. We definitely got some extra walking in. We were constantly taking Caleigh out of her chair so that we could carry it up or down a flight of stairs. It was an experience though and I'm so glad Caleigh got to do it.

The second day was set for us to go to Morgan's Wonderland. She was excited. We had looked at the website before the trip, and we had really been talking it up. Caleigh wasn't disappointed. My first reaction was that this is just an overpriced park... playground even. The actual playground equipment was designed by the same company that did our local accessible park. So basically it was our park on steroids. The whole thing was very low key. A little anti-climactic really.

The longer we were there and the more Caleigh was able to actually do things herself; the more I realized this was a truly amazing place. I liked the calmness. I liked that nothing was rushed. The park was open from 10-2 that day and we did everything that Caleigh wanted to do in that time frame.

Some of Caleigh's favorite activities were the ones that her wheelchair adapted too. Instead of having to get out of her chair, sit in our laps and leave her belongings behind; Caleigh was able to wheel onto the ride and go. Her favorite things were the wheelchair swing and carousel. Swinging is something that Caleigh enjoys daily, but she has never been supported this way before. The carousel is new to Caleigh. She really loved it and we lost count how many times she actually rode it.

On the third day, we went to Sea World. This was a much different experience for all of us. The park was crowded, expensive and the "kid" part of the park wasn't even remotely accessible to Caleigh. Between potty breaks, medicine and feedings; the Sea World schedule of shows really didn't mesh with Caleigh's schedule. By the end of the long day, we saw three shows. We were on our way to the aquariums and dolphins when we were told that that section of the park was closed. It was a huge bummer because I think Caleigh would have really enjoyed it. We went ahead and left around 4pm feeling a little defeated with the day.

That same evening I asked Caleigh what she wanted to do the next day. We offered to go back to Sea World to see the aquariums and dolphins or to go back to Morgan's Wonderland. Without even blinking, she chose Morgan's. So the next morning we packed up the hotel room, went out to breakfast, did a quick Alamo walk by, and then checked out of the hotel. On our way out of town we went back to Morgan's Wonderland. Caleigh went straight for the wheelchair swings and then proceeded to alternate between them and the carousel. During a train ride, Caleigh fell asleep. We waited out the short nap and then wrapped up our visit with a few more carousel rides.

We made the short trip up to Austin where we stayed a few days with friends. We walked around the city, ate at a ton of great food places, hung out by the pool, did a little shopping and relaxed. I was even able to sneak away for a morning of quiet kayaking, which I'm totally in love with by the way.

Our trip was quick, perfectly planned, and most likely the only one we will take this year. As far as Morgan's Wonderland goes, we will definitely return in the future. Caleigh still smiles when we talk about it. What a truly wonderful gift for our girl.

Quickie Zippie Zone

2012-05-22T18:10:00.002-05:00

It's been almost a month now since Caleigh's Quickie Zippie Zone manual wheelchair was delivered.
In a few words...we love it.

I've found that with each new piece of equipment that we get for Caleigh; we find out what is best for her. It seems to be getting a little easier to make decisions on positioning pieces, but it is still a large decision that we will have to live with for up to five years at a time.

The biggest decision that we made with this chair was make it a straight back, no tilt seat. This is big for Caleigh and her weaker head control. It was a risk that I'm glad we took. So far Caleigh has done well with holding her head upright, but she still does her low head tilt often. It's Caleigh's signature look; it's part of who she is and I'm ok with that.

A few things that I requested out of functionality and also just for plain good looks are the slim-line chest harness and the six spoke wheels. We went with the same headrest that we once used on her Kid-Walk. It's not so much for resting her head, but mostly for blocking Caleigh from hooking her head around behind it. So far this tactic is working wonderfully.

Caleigh and I took time to carefully pick out patterns from Grammie's Cricut machine to customize her new chair. I bought some vinyl and made the decorations. These should hold up to water better than stickers will. As you can see, Caleigh chose "toxic green" for the frame color. She is still big on loving the color green. I think it looks pretty cool myself.

Our DME also delivered a Stealth iPad holder for Caleigh's chair. This was a gift from the manufacture, and so far it's been the best one we have tried. Caleigh has been using Stealth products on her wheelchairs for years now, and they are very sturdy. This mount is no different. It's durable to Caleigh pushing and pulling on it. Movement is very little and we rarely have to tighten the joints. We are still working on the exact placement and angle, but Caleigh can carry on a conversation fairly well with it depending on her dystonia that particular day. So far she has asked strangers what their name is, told them "nice to meet you" and other appropriate conversation topics. At the same time, there are days that the iPad and Caleigh just don't get along. I modified our glue stick key guard to work on the new mount, and now it stays firmly in place. The only downside is that we can not have a protective case on the iPad while it is in the mount. This is fine for those that will leave it on the wheelchair all day, but we still use it outside of this scenario. It is easily taken in and out of the mount though. Having the mount in front of Caleigh, gives her something to push off of, which in turn, helps her hold her head up.

The chair is light weight and actually weighs less than the stroller type of chair we were using for awhile. Caleigh sits better in the chair with her AFO's on, but for these photographs we went with cute sandals. We've even made more adjustments to the chair and to the sandal straps since these photos were taken.

Our first real outing, was a trip to Whole Foods, in which I felt an immediate rush of pride for Caleigh and her new chair. I was standing taller, pushing the chair from the side, smiling at complete strangers. It's hard to explain, but for the first time, I had the feeling of pride with a chair. This chair fits Caleigh and her personality. I was thrilled that she was happy and it showed. So, yes, we love the new chair.

Mother's Swim Day

2012-05-14T10:15:00.002-05:00

We spent a quiet mother's day hanging out at home. We swam, napped and swam some more. Perfect Sunday for this lucky mama.

Caleigh swimming with her new LJ-A swim float. She loves it so far.

Hope all you Mom's out there had a fabulous day too.

The Mushroom

2012-04-30T18:43:00.000-05:00

So much has been going on these past few weeks it's hard to remember it all. I'll go down the line here...

Caleigh had her first EEG in over two years. She did really well and stayed quite content the entire thirty minutes. We got the results back and even though there are "discharges" none of them seemed to be seizure activity. So we can scratch seizures off of the possible list for sleep disruptions.

Caleigh's sleep has been somewhat better. After using her iPad in the middle of the screaming fits, we discovered that she was scared. Scared of her room, dark and depending on the night, certain stuffed animals. All typical stuff, but with her physical disabilities she can't jump out of bed and into mom and dad's bed. I took her shopping for a nightlight which she picked out. The mushroom above was the light of choice. Irony for the kiddo that doesn't eat, but it's a cute light. Since the nightlight, Caleigh has been falling asleep with no problems. Right now her pattern is to wake up about 3am needing to go potty or have her diaper changed. It's often hard for her to go back to sleep at that point. We also started waking her up at 7am no matter what the night was like. This too has helped regulate her daily nap and bedtime schedule. We are all slowly getting there.

Potty training has been big in our house again. Caleigh's only had one accident in the past two days. She's wearing big girl panties during the day if we are at home; pull-ups if not. I have to say it's exhausting though. I'm lifting her a lot more for this endeavor. We are spending a ton of time in the bathroom, but she is holding it when she needs too. I'm certain that if Caleigh was verbal she would be totally potty trained by now. It's something that she wants. She's proud when she makes it and upset when she doesn't. I'm not calling victory just yet, but things are getting better.

We went to endocrinology to talk about Caleigh's hormones and premature adrenarche. Really we got nothing out of it. In six months we will do another bone age scan and blood work. Until then we will just watch and wait for any signs of breast buds or menstruation. Basically, the same as before.

Caleigh has been on the Nexium for a few weeks now. The difference is really amazing. I can count on one had the number of times she has thrown-up. We played around with the timing of the dose and I think we have found a good time. For the first time in years we used a laxative for Caleigh's constipation this past week. Who knew a kid with short bowel could get good ole regular constipation? We were told to give her a little over a tablespoon, but we went the cautious route and gave her a teaspoon. One hour later she was on the potty and all clear. This alone has helped her rest better and she is generally in a much better mood. We have to go and get Caleigh's six month GI labs drawn sometime this week as well. Overall though, the GI stuff seems to be holding its own.

Caleigh also had a dentist appointment last week. These aren't too dramatic. In fact, she seems to enjoy them lately. Is it odd for a kid to like the dentist? We take her every three months, instead of six, mainly because we are concerned about her grinding and enamel eroding. For Christmas we bought Caleigh the Sonicare Toothbrush for Kids. It's recommended for ages 4+. It's been amazing and just since December Caleigh's plaque build-up was barely existent. It has a timer, it plays music and it vibrates like crazy. Eric and I have been Sonicare users for years so it was a no brainer for us to get Caleigh one. I highly recommend it.

We've been so busy with appointments, home school and playing outside. As you can tell by the instagram photos, I haven't even pulled out my big camera these past few weeks. This past week we swam almost everyday, and it has truly been wonderful for Caleigh. I've also taken to crocheting. I taught myself about a month or so ago and I can't stop. Initially I was learning for my art work, but it's turned into a nice hobby. Yes, I'm about thirty years to early on this hobby, but it's helped me with my nightly teeth clinching and relaxation. It helps take my mind off of things. I crocheted Caleigh's headphone wires, numerous hot pads, and I just started my first afghan for Caleigh. Feel free to call me granny....

We went ahead and did Botox. I'm planning a post with photos, but so far the results have been positive with only a few side effects.

Caleigh's manual wheelchair was delivered a week ago. I'm planning a post devoted to just the chair as well.

Burgers 4 Babies

2012-04-19T06:44:00.001-05:00

Thursday, May 10, 2012, Eric and I will be dining at the best spot in town for a great foundation. Thirteen world renowned chefs dishing out enough meat to make a paleo smile, will be at the event. Lucky for the veggie lovers, there will be a lot of other amazing dishes and drinks as well.

Caleigh 2 weeks and 5 days old

This outdoor chic event will be held at Tim Love's The Woodshed Smokehouse. You may remember Chef Love from Iron Chef, Top Chef and not to mention every morning show imaginable. He's a bit of a local celebrity with deep roots to prematurity. Tim's daughter's were born 4 weeks prematurely. Him and his wife know all too well the struggles of the NICU experience. Tim has dedicated himself to raising money and awareness for the difficulties families face with the premature birth of an infant.

NICU Helping Hands is an organization that develops hospital and community-based projects that provide education and support to families of premature infants. Their mission is to provide comprehensive support programs and resources to parents of premature infants in the community, not only during their stay in the neonatal intensive care unit of a local hospital, but during and after their transition home.

I've been on the board for NICU Helping Hands for about a year now. Eric and I are on the host committee for this year's event. This year I will also be photographing the event. I can't brag enough about this organization. I can only imagine the positive affects, if we had a foundation like NICU Helping Hands during our six and a half month journey. I just love the support that is given to families during such a fragile time.

So come out and join us for a night of delicious food and drink at an amazing venue. Besides, you don't want to miss the chance to catch a glimpse of Eric and I dressed up and out in public. It's a rare event, trust me.

Click the image below to find out more....

Neuro, GI and Kaye

2012-04-09T20:55:00.001-05:00

Last week we went to our neurology spasticity clinic. At the neuro office we talked about Caleigh's legs. They are both turning in slightly, her heals don't touch the ground and her knees hyper-extend. You can see photos and the post of that here.

We talked about all the options. Casting, Botox and surgery. Both orthopedics and neuro don't feel that casting is a good option for Caleigh. So in two weeks we will go to the Botox clinic for Caleigh to get one vial injected in two calf muscles and the muscle that runs down the inside of the leg. This will help the knees, the turning in and a little bit of the achilles issues. This will hopefully postpone surgery. Another thing to point out is that doing Botox is completely optional. We have up until the last minute to back out. So if you have any stories bring them on. The results only last for 3-6 months, and then we would have to go back in to re-inject the muscles. It's scheduled, so we'll see.

Another thing we talked about is Caleigh's sleep or lack thereof here lately. It's pretty exhausting for all of us. She'll have one good night followed by a night of up and down every thirty minutes. Some days she will gratefully take a nap instantly upon laying her head down. Some days she will yell and refuse. The way Caleigh's guts work really requires her to have a nap everyday to make it through the afternoon. Sometimes she wakes up in pain, almost wincing. Sometimes she wakes up scared or after having a bad dream. We've tried moving bedtime, bathtime, naptime, etc. Nothing works, nothing sticks. Ever since the February growth spurt she's been all off, and the odd sleep pattern seems to be one of the last things hanging on.

Just to be safe we requested an EEG. Caleigh has been off of seizure meds since the summer of 2009. That's huge, but the chance for them to return is always there. I really don't think that this is seizures, but you never know.

We also backed down on the Artane last week to see if she really needed it, and two, to see if it was causing the sleep issues. We learned that, yes, indeed she needs that medicine to work through her dystonia, and no, it wasn't causing any sleep changes. She is back up on her full dose again. So as far as neuro goes we will see how the EEG looks, but the sleep issues don't look to be medicine induced.

We went to GI two days after seeing neurology. We questioned the fact that she vomits her medicine two out of three times a day and sometimes it seems that she is having reflux symptoms. She has even mentioned her chest hurting. Caleigh has been off of reflux meds for a couple of years now. She wasn't symptomatic, her scope showed no damage, and reflux medications have been known to actually cause intestinal bacteria; something she doesn't need any help with.

After an in office stool test, there was quite a bit of blood showing up. So we decided to start with Nexium and work from there. Luckily, Nexium has dextrose as it's sugar base, which she can handle. There is probably a lot of upper esophageal bleeding going on. So that might be where the blood is coming from. Also, Caleigh's g-button is extremely sore. The outside is ok, and looks good. The pain is coming from the inside. Probably from acid issues, but we wouldn't be able to tell without a scope. I think this may be why some of her waking up seems to be in pain. The first night on Nexium was extremely promising with a full night of sleep and a nap the next day. She acted like she felt better, but each day since has proved to be not so lucky. Although the vomiting is much better, we don't have any answers yet. Another scope may be in her future.

The new chair that Caleigh is sitting in is called a Kaye bench. We actually had the bench, but the seat positioner and the desk were bought for Caleigh through DARS. So far she is sitting in it wonderfully. If the desk top wasn't in place she wouldn't be able to use the bench in this way though. It's another tool in our arsenal of positioning devices to keep things in line. The desktop is usable with all of her other equipment as well; it's extremely adjustable. As you can see in the above photo, Caleigh can stand up and then sit back down in it. Total supervision here, but up and down on her own nonetheless. I'm excited about the homeschooling and play possibilities with this setup.

Safety First

2012-04-06T20:47:00.000-05:00

Weather Safety: This past week our area was turned upside down by tornadoes. If you haven't seen this video; you should check it out. Fortunately, no one lost their life.

Living in North Texas has it's perks. Winter generally isn't too bad. Springtime is beautiful and usually arrives before most of our northern neighbors. With the green grass comes terrible allergies and sometimes scary storms. The days all start out the same, warm and muggy with a chance of rain. By the afternoon, the sirens are going off in our neighborhood and we are huddled in our safe spot.

This past week took me by surprise. I'm usually a planner. With the way our monthly supplies are regulated, I had been pulling from our emergency bag all winter long. A feeding bag here, a syringe there. It added up. Since Caleigh hasn't been admitted to the hospital in over two years (round of applause please) we no longer have a hospital bag. Our to go bag turned into our emergency bag. An empty one at that.

It's so important to go through your day and decide what you use with your child, disability or not. Change of clothes, medical supplies, diapers and wipes, medication list, doctor list with contact information, and important documents. It's different for everyone. Strapping a backpack on while your huddled in the bathroom could be a smart move.

I'm ready now, even if it took tornadoes too close to home to remind me that the season is upon us. We were actually supposed to be in the car on the way to OT, straight in the tornadoe's path, at the time. Caleigh, Eric and I spent a long time in our laundry room and quite awhile picking up branches and random attic insulation that had blown into our yard, but we are ok and prepared for the next time around.

Pool Safety: I even hesitated writing about this, but I feel a responsibility to do so. Caleigh has been using the neck float, seen in these photographs, since she began swimming. It's been several years and we have been through three sizes in that time. The float has given her major independence with swimming, and I really believe that is one of the reasons she loves to swim so much.

This past weekend Caleigh had a few friends over to go swimming. You know that infamous line "it only takes two seconds?" Well, it did.

We are always in arms reach while swimming. Eric was on Caleigh duty. All of the adults in the pool turned to look at a shrub that wasn't doing so well, and the next thing I knew Eric was pulling Caleigh out of the water. He said that when he looked back down Caleigh was at least a foot under the water. I handed off the adorable baby I was holding and we headed out of the water.

By the Grace of God, Caleigh somehow held her breath when she went under. She didn't even cough. She was scared. We were terrified, but thankfully she was fine.

So what happened? The neck float broke. There is an area that the clips attach to. The clip separated from the float itself and that gave Caleigh's head enough room to slip out of the back. It took two seconds and she was under the water.

I have mentioned the float on this blog several times and referred countless parents to the Waterway Babies website. The owner is wonderful and extremely helpful. These floats can be found all over the disability community. Accidents happen though. My goal here is to not talk badly about Waterway Babies neck floats, but to make parents aware of the possibilities. To learn from our mistakes. I, myself, am guilty of putting too much trust in this cheap piece of plastic. Never again.

Permobil Head Array Prototype - Update

2012-03-30T07:40:00.000-05:00

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

2012-03-27T19:32:00.002-05:00

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

2012-03-21T21:36:00.000-05:00

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

2012-03-15T21:05:00.003-05:00

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

2012-03-12T22:00:00.000-05:00

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

2012-03-09T22:18:00.001-06:00

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

2012-03-08T12:34:00.000-06:00

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.

Specs & Shades

2012-02-16T20:35:00.003-06:00

Last week we had an appointment with a different eye doctor. This was a second opinion for strabismus eye surgery, prescription check, and another opinion on Caleigh's eye infection that she had in December. We took her to this particular doctor about 2 years ago for the same reason; a second opinion. Out of convienance we stayed with our original doctor, but the last 3-4 times we've gone in, the mood of the room has been very negative. Because we did not meet eye to eye on Caleigh having strabismus surgery; we were looked at as careless parents. So a change of pace was definitely needed.

The new(ish) eye doctor confirmed our concerns about surgery. He feels that Caleigh's eyes are crossed at times due to her dystonia and nothing more. We are happy with this confirmation. So from now on we will just watch it to make sure there aren't any changes. As far as the eye infection goes, we will have to wait and see if there is a next time and then take her in then. Hopefully there won't be a next time. He dilated her eyes, and Caleigh was very cooperative; something she wasn't at the previous office. This new doctor has amazing patience. The prescription changed only slightly with her astigmatism. We are scheduled back in a year unless we need something. The plan is to stick with this doctor from here on out. Even if it isn't the most convient plan, it's what is best for Caleigh.

So new glasses were ordered and they came in today. We decided to go with the frame-less Silhouette glasses. Caleigh's favorite color is still green so that was the color she picked. They aren't the classic, purple, thick frames, but comfort and the ability to grow into them a little bit more was the objective. We've got to play around with the adjustments some more, but already Caleigh's ears seem to be more comfortable. Same Caleigh, different glasses, but it will take some definite getting used to.

We also ordered new prescription sunglasses at the same time. Caleigh loves these. They are big and fabulous with room to grow. Little Hollywood. We ended up getting the lenses polarized for the soon to be long days by the pool.

Ortho, Hockey, Eco2 & Elle

2012-02-02T12:55:00.005-06:00

Caleigh just finished an almost month long trial with the Eco2 by Prentke Romich. She did really well with it. We tried the Eyegaze technology for a day or two but the device could never pick up her gaze. We then received a 45 square key-guard for it, and Caleigh really seemed to take off. So we stuck with the direct selection method.

Trial after trial of device after device, and we have now decided to purchase the Eco2 for Caleigh. The language system has the most potential for her future. With the proper mount and positioning she is the most independent with this device. It will not take the place of Caleigh's iPad to begin with, but after time and practice it could very well do just that. I definitely think that these big dedicated devices are for older children and adults that are generally in their chairs for longer time periods. It just makes more sense. Until Caleigh is in a chair and communicating for longer stretches, the iPad is definitely more logical for us.

Here's a quick video of Caleigh using the device. Here we have her selection at 45 squares one hit. She does tell me "please" after I turn off the camera.

I added this photo mainly to show Caleigh's hair in a bun on the top of her head. She likes to match her mommy and asks for a pony tail a lot when we are hanging out at home. It's getting pretty long. When her hair is wet and brushed out straight, it will touch her shoulders, but it quickly curls right up.

Last weekend, Caleigh got to stay up past her bedtime to go to her first hockey game. It was a Guns & Hoses benefit game. The firefighters won the game, which hasn't happened in several years. Caleigh must have been good luck. She loved the game and was all smiles while her Daddy was explaining it to her.

Yesterday morning, Baby Elle underwent her very own gastrostomy tube procedure in our garage. I had to change Caleigh's button out the other night because the ring that the tube locks into came out. It happens pretty often, but most of the time the button is too far gone to save. This time I could piece it back together. So I asked Caleigh if any of her babies needed a button like hers. She immediately told me "yes" and then said "Baby Elle." It was a pretty cute scenario in our house. Eric asked Caleigh all the surgery questions like.. holding the button, "Is this what we are placing in Baby Elle today?" yes. "Where does it need to go" Caleigh grabs her belly. "She is going to be in good hands Mommy Caleigh." Caleigh kisses her goodbye. Baby Elle made it through surgery just fine. Caleigh's been playing with her non-stop since and we've "fed" her many times. She wants all her babies to now have buttons. I had to explain that we couldn't just get buttons for the babies; that they were for Caleigh. She wasn't too pleased with that excuse. Until the next one gets replaced.....

Now on to Orthopedics. About two weeks ago Caleigh was irritable, not sleeping well and generally whinny. I finally figured out that she was having growing pains about two days into the ordeal by pulling up the body parts folder on the iPad. She told us legs and ankles hurt. I massaged, stretched and massaged her some more. By the time she was done with her little spurt she was skinnier, a tad taller and her right foot looked like this.

On Wednesday, Caleigh had her 6 month follow-up with Orthopedics. They took x-rays and everything with Caleigh's hips looked exactly the same. No change there. That's the good news. They looked at the muscle tone and watched her take steps in the office. After sizing everything up, they think her quads are probably tight, and of course, her achilles tendon in her ankle.

The achilles is causing the knee hyper-extension and the tight quad is probably causing the right leg to turn in. Fun Fun Muscle Stuff. The above photos show what the two main positions of Caleigh's legs are without her AFOs. The recommendation is a cautious botox treatment. Cautious because Caleigh's dystonia causes brief spastic muscle tightness, and not continuous contractions. She uses the tone that comes with her dystonia to do what she is able to do. This includes standing up after using the potty, practicing standing transfers, using her walker and driving her powerchair. She uses what the Lord gave her. So paralyzing those muscles is a tricky decision for us, but something we need to consider. There's always something to think about next.

Gratitude

2012-01-30T20:54:00.006-06:00

How do you say thank you for a life changing gift? How do you convey the emotions related to a gift that will bring your child joy for the rest of her years? Gratitude.

This past Wednesday, most of the individuals involved in creating Caleigh's pool came to our house to see the final product and to meet Caleigh. It was a cold and dreary day; the rain had stopped just long enough for the get together to happen. We gathered by the pool and the story of how Caleigh's pool came to be was told. The pool was blessed and then everyone huddled in for a photo.

Everybody was in and out fairly quickly. When everyone had gone and the house was once again quiet; we felt as though it just wasn't enough. Nothing we can say or do will ever be a big enough thank you. The Claffey family and their partners are amazing, humble and truly wonderful people. To see a little girl that wants nothing more than to swim; to take that wish and make it easily come true is just phenomenal to our family. Even though the pool is in and done, we still peek out into our backyard in total disbelief. It still doesn't seem real sometimes.

Over the nine weeks that the project took to complete; we were excited about each and every step. We absolutely enjoyed each area of the construction process. The anticipation for Caleigh was huge. It still is, and I guarantee that she will be excited each time she is able to swim. Our lives will never be the same again. Forever changed for the better. Forever joyful.

Once again a HUGE Thank You to the loving Claffey Pools Family and these wonderful partners that donated their services to Caleigh's pool.

Charlie Claffey
Brian Claffey
Shelley Claffey-Broder
Paul and Barbara Claffey
Mac's Excavating
Maddox Steel & Plumbing
Prestige Gunite
Gustavo Martin Tile & Coping
Alliance Materials
Avery Irrigation
Kel-Tex
Southwestern Plumbing
Pebble Technology
Zodiac Pool Systems
A & B Plaster
Mackie Electric
Kids Matter International

A special thanks, as well, to Caleigh's Mimi, Pop, Grammie and Grampa for all that you do to help with Caleigh and did do with the pool preparations. We couldn't do this without you.

Everything we do should be a result of our gratitude for what God has done for us. -Lauryn Hill

Caleigh's Pool - Week Nine - Completion

2012-01-22T20:47:00.004-06:00

Day 29 - Manual vacuum, Rocks sealed and Clarity added 1-16-12
The manual vacuuming wasn't getting all of the fine plaster particles so a product called Clarity was added to the water and the filtration system was turned back on. The rocks were also treated on this day. We will have to seal the natural rocks at least once a year to protect them from the saltwater.

Day 30 - Chemistry Checked 1-17-12

Day 31- Deck wash, salt added and saltwater pump started 1-18-12
Something isn't working right on the saltwater pump. We are waiting on a repair at this time.

Day 32- Fill line and irrigation adjusted, Heater repaired and started, Saltwater training, Signed off 1-19-12
They had to put a new transformer on the heater. We are thinking there was a power surge at some point that caused the heater and saltwater pump some issues. When they were done, we started the heater in hopes of swimming the next day. The temperature was going to be about 75 degrees so we set the heater at 85 degrees.

That night we dipped our toes and talked about swimming the next day. Caleigh was kicking and squealing. She was so excited.

Day 33- Grass laid, Lift plumbing re-routed, Backyard prep and 1st Dip 1-20-12
Eric re-routed the plumbing line that will go to Caleigh's pool lift when it is installed. The lift will by hydro-powered, so some fresh water plumbing was involved to get it set up. We are looking at probably getting the lift installed this summer.

The landscaping company came back and laid more grass to areas around the pumps and by the new fence.

By the time all of that was done, it was almost 5 o'clock in the afternoon. The pool water was 85 degrees and you could hear the gas meter hissing from the street. I would say this was Caleigh's first dip, not so much swim. We only lasted maybe 30 minutes.

The water was chilly in spots and we learned a good lesson about heating the pool. Turn off the waterfalls, so that the warm water is flowing directly into the body of the pool and not losing it's momentum in the air.

It wasn't ooh la la comfortable, but had we swam a few hours earlier when the sun was higher, I think it would have been perfect. Caleigh was no doubt excited to finally get in, although she agreed it wasn't summertime splashing fun.

There is a lot of fine tuning that we need to figure out as far as the heating system goes. We've heard a lot of "comfortable" temperatures to set it at, i.e. 85. We've also heard a lot of times to heat the pool for, i.e. 10-12 hours. I think we will just have to test it out, see and hope that we don't rack up a huge electric and gas bill at the same time. The pool heater is mostly to extend our swimming season. So for Texas this most likely means March - early December.

Our next dip in the pool isn't in the foreseeable future, or at least the 10 day forecast. We've decided that it needs to be at least 75 degrees outside, preferably 80 before Caleigh's muscles will be comfortable enough in the water. The wind has a lot to do with how comfortable the experience is as well. We've downloaded a weather app on the iPad so that Caleigh can track the possible next swim.

It was 75 degrees yesterday, but the winds were kicking in around 20-30 mph. It would have been miserable. So instead of swimming we hung out on the deck and I painted Caleigh's toe nails in the warm air while Eric worked on the never ending landscaping tasks.

That's it. The construction is complete. Caleigh's been in the pool. It's done. Never in a million years could we express just how special this pool is for Caleigh. We have a get together planned for everyone involved with Caleigh's Pool this coming week. Somehow we will try to show our immense gratitude for this amazing gift.

Edit: Because I always get a ton of comments and emails, this is the neck float that we use for Caleigh. We use the large size. Waterway Babies

Teaching Her

2012-01-18T13:20:00.006-06:00

I've been Caleigh's official teacher for almost two weeks now. I almost feel like this is the beginning, but really I've been teaching her for years now. The only difference is a more intense curriculum, record keeping and an official title for me.
Homeschool mom.

Let me talk about that title. It scared me to death. Mainly because I feel like I do not fit into this category. I wasn't one to grow up wanting to be my child's teacher. I didn't know the moment I got pregnant that homeschooling was for me. The only plan that I had was to stay home with my child until she/he started school. As in, out the door at a school...learning.

From my reading and research there are three different kinds of homeschool parents (my opinion here.) The ones that always knew they would teach their children even before their birth. The ones that started teaching their toddler, loved it and continued on. And the ones that had their child in a school system, didn't like the situation, for one reason or another, and decided to withdraw their child. Disabled child or not, that is what I have found.

With our case we fall in-between. Maybe that is the disability route? We kept Caleigh at home with a central line during her first year of would be starting PPCD. Her health was our concern. I started a day by day casual pre-k unit program. Then we were full steam ahead when she turned 4. She was central line free and at a point that we felt she could handle the exposures. We yo-yo'd if you will. We attended meeting after meeting. We attended preschool with Caleigh for over two weeks. Health concerns and teaching concerns just didn't fit. It wasn't right for our daughter. So here I am, homeschool mom.

Basically, I fought what I knew was right all along. I fought, what is still to this day socially "different." Maybe I wanted to fit in with the normal path that parents take. Maybe I was concerned that the professionals that work with Caleigh would think we were bucking the system. Maybe this was my last holdout of "My Plan" as a parent. Maybe I wanted Caleigh to have the school experience that Eric and I had. The stereotypes in my mind were pretty ingrained as well. The long hair and skirts, the large families, the evangelical christian co-op groups. It was hard for me to see myself in those stereotypes, but that's just what they are, stereotypes. They aren't always the truth, and so what if they are, differences make the world go round.

After I got over my issues and started focusing on Caleigh, all of my worries disappeared. I let go. At this point I wish that I hadn't put Caleigh through starting and stopping school. Although, hindsight is always 20/20; our experience by no means leaves us with "what if" questions. We already know the answers.

Today I attended our last ARD meeting. This meeting was set to go over the fact that our school district was denying Caleigh home bound education. They feel that their schools can accommodate "Caleigh's chronic diarrhea." Obviously we disagree with this. Mostly that "chronic diarrhea" is not really the issue here. They had missed the mark....again. It was a very short meeting. The home bound coordinator and teacher failed to show up....again. The coordinator participated over the phone after being called. This meeting was easier for me than the others because I was resolved to homeschool my child. I wasn't expecting anything from these people and I wasn't having to fight for anything. I felt no need to hash everything out. We're done. D-O-N-E.

Now on to the fun stuff, teaching her.

These past few weeks have been a lot of fun for both Caleigh and I. Our curriculum consists of just about every subject. Caleigh is doing 3rd grade math and actually gets a little annoyed with me sometimes because it is still pretty easy for her. I thought the mathematics load would be too much for her just because of fine motor skills, but she has proved me wrong. I've also started with the basics as far as phonics goes just so that I know that we have covered everything. She is doing some easy readers by herself while we are reviewing blending and letter sounds. I feel like I've been reading non-stop. Caleigh asks to read her library books and school books all the time. We've read through chapter books and re-read favorites. She has always loved to be read to, but it has really picked up since starting.

For holidays and special events we will do a unit study. Monday we talked about Martin Luther King JR a lot. We did a brown and white egg comparison. Caleigh spelled out on her iPad what was the same and what was different between the two eggs. We watched MLK's famous "I Have a Dream" speech on YouTube, and Caleigh watched the full 17 minutes of it intently. Having a child with a disability makes Mr. King's speech take on a whole new meaning for me personally. We also read a really good library book on the subject.

Our schedule is so flexible with teaching this way. Caleigh took a 3 hour nap the other day. She needed it and I was able to let her do that. A full day at a school couldn't offer such rest. It works perfectly with Caleigh's therapy schedule and doctors appointments. We also start art class back up tomorrow morning. By the time Caleigh is ready to go to bed we have completed everything that I had scheduled. So far so good.

You know that feeling of complete and total acceptance in your decisions? Confidence. The feeling deep down in your gut? I now have it. It's a good place to be.

Caleigh's Pool - Week Eight

2012-01-15T12:40:00.004-06:00

Day 25 - Power wash rocks 1-9-12
We got several inches of rain this day. They came out and power washed the rocks, brushed and cleaned out the leaves in the pouring rain.

Day 26 - Masonry rock repair and start-up chemical check 1-11-12
There were a few rocks that needed to be repaired and reattached. The start-up process is a three visit schedule. This was the second visit.

Day 27 - Start-up chemical completion and Landscaping 1-12-12
To finalize the start-up chemical process, they clean out the filters and make any adjustments necessary.

Day 28 - Training Day 1-13-11
Eric and I bundled up Caleigh, she chose her stander, babies and music; and then we headed outside for our pool training.

Meet Becky.... Caleigh's new pool cleaner.
Most families name their pool robot. I remember a friend's from when I was a kid, The Octopus. So when we asked Caleigh what she wanted to name her new pool cleaner she spelled out Becky. Becky is a Polaris 480 Pro....and apparently female.

During our training we learned about the filtration systems, chemical balances and when everything needs to be cleaned and replaced.

The water in the pool is still very dirty. You can't even see the bottom right now. The landscaping is now covering the loose dirt. So that should help out a lot. We've put something called Alum into the water and shut off the filtration as of this morning. Alum puts a thin layer on the water. Once the filters are turned off the Alum sinks to the bottom of the pool taking all the dirt with it. Tomorrow they will come in and manually vacuum out the bottom of the pool.

By the end of next week the saltwater system, heater and chemical balances will be turned over to us. Today, January 15th, is supposed to be 70 degrees. We are hoping the unseasonably warm weather continues its pattern.

Caleigh's Pool - Week Seven

2012-01-07T20:00:00.000-06:00

Day 20 - Dirt Work and Final Water Pump Out 1-2-12
Eric and Grampa spent the afternoon cleaning up the fence area and adding more dirt to spots that needed it.

That same day, the leaves and dirty water were pumped out of the shell for the final time.

Day 21 - Final City Inspection 1-3-12

Day 22 - Plaster 1-4-12
Pebble Sheen Aqua Blue

Day 23 - Plaster pressure washed, buffed and Water Filled 1-5-12

We started filling the pool with water somewhere between 10-11am.
Caleigh had her last chance to stand in the bottom of the pool with Daddy.

She was so incredibly hyped this day. We kept going outside to check the progress. She couldn't take a nap and told us that she felt "excited."

The weather was beautiful and unseasonably warm. We spent most of the afternoon outside soaking it up.

There was still quite a bit to go by the time Caleigh was ready for bed.

Eric stayed up and finally turned the water off around 1am. Our estimate on water gallons is about 8900 give or take a shower or two. By the next morning the pool was full and gorgeous.

Day 24 - Pump and Chemical Start Up, Gas Meter and Mastic 1-6-12
The pumps were fired up and the start up chemicals were added to the water. The chemicals made the water cloudy and changed the overall color a bit.

Since the final city inspection was complete, the gas meter was ready to be installed.

On the decking, there was foam inserted in the joints when it was laid. On this day, they applied mastic to those joints. We weren't allowed to step on these areas for 24 hours.

For the next 14 days the pumps will run 24 hours. We will also be brushing the plaster twice a day to loosen up any debris and push it towards the main drains. Today, I quickly learned that the simple task of brushing is quite the workout.

There is still a lot of little things that need to be done before Caleigh's actual first swim. Now that there is water in the pool, Caleigh asks to go swimming at least twice a day. Little things that she can participate in seem to help the growing anticipation.

The next two weeks will hold all the finishing touches.

Christmas Recap 2011

2012-01-02T15:33:00.004-06:00

This year Caleigh's Christmas had one theme and one theme only.
Babies.

Meet Baby Abby. Santa pulled through and brought Caleigh the exact doll she asked for. Dolls galore, puzzles, swim stuff and books dominated the unwrapping this year.

Some of the baby dolls Caleigh received already had names. The ones that didn't quickly got named. Some of the names Caleigh spelled out for her new dolls were: Elle (Swimming Baby) Gail (Elf on the Shelf) and Daleigh (pronounced Daylee).

Overall, it was a good Christmas. I know I say this every year, but each holiday gets better and better with Caleigh. She understands and grasps more about the traditions. She participates more now that she is using her iPad and quite honestly people are listening to her more often too.

Caleigh will name off the babies that she wants to play with. This particular day she asked for them all by name and then slowly but surely pushed them all off of her tray.

With Eric's work schedule we were up checking out what Santa brought at 5am this year. Caleigh was in a bit of a sleep fog the whole time. We made memories, took photos and opened presents in just enough time for Eric to make it to work. Caleigh took a 3 hour nap that day!

I got a new lens for my DSLR. It's more of an art type lens, but I like the dreamy effects. I've got some plans for it. Maybe this new year will give me the time I need for my art. Just Maybe....

Caleigh would play with babies all day if I let her. I like to think there is imaginative play happening while she is wiggling around on the floor or chewing on them while in one of her many pieces of equipment. Either way this is her favorite spot right now.

The Gray family is in organization mode now that the holidays are over. We are working toward a fresh and organized beginning to our official homeschool start and the completion of Caleigh's backyard oasis. This Christmas flew by, but I definitely know a little girl that will be counting down till next year.

Caleigh's Pool - Week Six

2012-01-01T18:45:00.001-06:00

Day 17 - Door alarms and fence latch installed 12-28-11
Alarms were installed and a new fence latching system was placed before the final inspection could be completed. The final inspection is done just before the plaster is applied then the pool is filled with water.

Day 18 - City Inspection - Failed 12-29-11
The chain link fence that we had in-between our driveway and backyard did not meet our city inspection code. The holes were 2 1/4 round, city code requires 1 1/4 round and a certain gauge steel. Little feet could climb right up and over that fence in a hurry.

Eric spent most of the day calling around trying to find the correct size; only to find out that most everyone didn't carry it or hadn't heard of 1 1/4 chain link. Everyone from Home Depot to wholesalers were a no go. So we started going through options. Wood, metal, chain of loved ones holding hands.....
We needed something fairly quick. After all, the completion of the pool was waiting on this fence debacle.

We decided in the process that we wanted to remove this area of our driveway if we were going to go to the trouble of getting a new fence. It's purpose was another parking spot and backing up space. This makes our backyard bigger and gets rid of the already buckling concrete.

I love my vines. I'm a fan of all things green and if it stays green all year, even better. Everyone at Claffey Pools did their best to avoid tearing up the vines. In the end, we had to tear down the fence, which made them come down anyways. It was a sad day for my tree-huger heart. I'm hoping for a controlled vine return in the spring.

Friday was our 11th wedding anniversary. Our gift to each other was the unexpected metal fence and concrete removal. It's the little things, right?

Day 19 - New metal fence installed 12-31-11

We like it. It looks more modern and seems to go with the pool. The area looks tons larger, probably because the vines are gone. It's just more open.

We need to bring in some dirt to fill the hole where the concrete was. We'll have to decide on some landscaping at some point as well.

Fingers crossed the new fence passes the second city inspection. If it does, Caleigh's pool will be full of water by the end of next week.

Happy New Year!

Caleigh's Communication Part 6 - PRC ECO2

2011-12-27T21:06:00.003-06:00

On December 12th we had a meeting with our speech therapist and the local rep for Prentke Romich (PRC) to trial the ECO2 with EyeGaze. This isn't the first time we have trialed a PRC device. The rep has probably been to our home 4 times now. The ECO2 device works similarly to the Tobii that we trialed a few months back. The PRC and the Tobii use the same eyegaze camera, so I highly recommend trying both if your going to go that route. The Tobii work seamingly well for Caleigh, but something was missing for me to be 100% sure it was the device for us. So we trek on...

It's no secret that I love the language system, Minspeak, that comes with the PRC device. If accessibility wasn't the issue we would have grabbed one of these up 2 years ago. The first time we sat down with Caleigh, using the eyegaze, she was frustrated and it didn't work. The next time we tried it we were alone, calm and tried for 20 minutes. The device was registering her eyes, but her glances are just too quick for any choice to be made. The Tobii was much better in this regard, but it lacks the language system we love.

A keyguard was ordered, the eyegaze system was removed and Caleigh started using the ECO2 on her wheelchair tray with 45 single hit choices laid out in front of her. It's not perfect. She has accidental hits. She repeats the same thing over and over trying to get her point across. The device isn't in the perfect position on the tray. Even with it not being "perfect" just yet, she is totally using it appropriately. The good news is that we know our daughter. We know when she's being bossy, sarcastic or seriously needing something. Caleigh says she likes it, which is huge for our iPad loving child.

On one of the first days Caleigh used the device, I asked her if there was anything that she always wanted to say that was never on her iPad. She paused for a moment, hit "you" and then went to the pages section, she found a category with words of affection, then hit "you are" "pretty." I'm not even going to lie here, I might have choked up a bit or a lot..... It just seemed like a pinnacle moment.

It's hard to explain to someone that has never seen the device, exactly how you can say hundreds of thoughts with just 45 keys, but apparently it can be done. If you watch the documentary "Only God Could Hear Me" you will be able to understand the hieroglyphic system a little more in depth.

The goal for this week is to customize it a little more for her now that we know she can access the 45 keys. Her excitement has waned a bit without the customization. We will also start talking about funding, mounting systems, what the rules are and if this is really the device for Caleigh.

The video below was taken on Christmas Eve. Caleigh has a sarcastic humor about her, which I assume most children might. You ask them to do one thing and they do the opposite while smiling at you. That's Caleigh. Some of her responses are that humor and some are accidental hits. After watching the video, I realize that I need to cut down on the number of times I make a request. Something for me to work on. Side note here -- apparently my Texas twang really comes alive when hanging out with family on holidays. Something else to work on!

Merry and Bright

2011-12-25T22:54:00.001-06:00