Caleigh's Communication Part 6 - PRC ECO2

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

Caleigh's Pool - Week Five

Day 14 - Dirt work completed, french drains installed and trash removed 12-19-11
This was all done in the morning. By 1pm it was pouring down rain and continued most of the day. These photos were taken in-between down pours.









Day 15 - Irrigation Completed 12-20-11
New sprinkler pipes and heads installed. Sprinkler system wiring replaced.

Day 16 - Fence paneling replaced 12-21-11
We plan on eventually replacing our fence with something a little taller and more private. Some of the fencing must be 20-30 years old at this point. Our house sits on a diamond shape lot, so to say we have a lot of fence is an understatement! It's on our home repair list.



12-22-11 through 12-26-11 Christmas Break

3 Sleeps

It's been almost 2 weeks. I haven't updated about Caleigh's eye and everything else she has been up to lately. So, I thought I would take a moment to jot things down. No particular order here....

Caleigh's eye is better. She has a few remaining pink healed areas and it hasn't bothered her for over a week now. The liquid medicine, that contained sorbitol, didn't work for Caleigh's intestines. With each dose she was vomiting more and her stooling was increasing. We stopped it and now we add sorbitol to our list of intolerable sugars. We have an eye appointment on Friday to check on things. I suspect everything will be fine.

We've had several Christmas get togethers with many still to go. This past weekend was packed with them. Caleigh got the chance to tell Santa what she wanted for Christmas using her iPad. She gave her name and age. She went through the whole list. She even threw in some chit chat. When Santa asked if she was a good girl this year, Caleigh told him "no." He said, "Oh, I'm sure you've been a good girl." She said "I don't know." I think she might have been testing him...

We've been doing an Advent calendar this year. Caleigh enjoys it and she can tell you exactly how many days until Jesus' birthday.

We went ahead and signed Caleigh up for another semester of art class. She seemed excited about it and other than the "don't help me" whining, she did really well. Caleigh was even invited to a play date with one of the kids in the class. Socialization...check.

I've been working on getting curriculum together in hopes of starting to formally home school this coming January. I think I have everything set, except math. Most of the kindergarten math companies have manipulates and it's all about counting. I discovered Singapore Math, and I like what I am reading about it so far. No manipulates, just straight facts. Repetition is kept to a minimum. In general, the grade level of Singapore Math is one year ahead of traditional levels. They have placement tests on their website so that you can decide what level your child is. Each test takes about an hour to complete and I've been able to adapt each test for Caleigh using the iPad. I'm still testing right now, but so far she has completed and passed 3 math tests up to 2nd grade A. They have A & B for each grade. We will do B next and see where it takes her. I have yet to stump her. With each test she surprises me. The deeper I've gotten into choosing and deciding curriculum, the more confident I am that this is right for Caleigh. Where else could she get the right level of math while learning the right level of language arts? It just fits us.

We are trialing another communication device right now. Caleigh is doing pretty awesome with it so far. I hope to put up some video and talk more about it soon. We are all crossing our fingers that this is "the one."

Caleigh's bacterial overgrowth seems to have subsided. It's been just over a month since her last round of antibiotics. She stools up to three times a day, which is a good number for Caleigh. I actually made the decision to start upping her feeds again. We haven't done this since June. Right now she is getting fed 14.5 hours a day. Most of which is while she is sleeping. The freedom is really nice.

That's about all I can think about right now. With only three sleeps until Christmas we have a lot to do to get ready!

Caleigh's Pool - Week Four

Week four was slow going as well. The weather here in North Texas isn't cooperating very much with our Christmas swimming plans. Week three was freezing temps, this week was much warmer, but very dreary and rainy.

Day 12 - Rain water drained from pool shell 12-13-11

Interesting pool tidbit: The two holes drilled into the bottom of the pool shell (see photo below) are to keep the gunite from popping out of the ground. The weight of the water in a pool is actually what keeps the shell in the ground. Without water, it could just pop right out! These two holes help that issue. They will be one of the last things filled in and finished out.



Day 13 - Plumbing touch up 12-14-11
Pipes cut and fitted, Exposed pipes buried, Faucet hookup for water hydraulic pool lift.





12-14-11 through 12-16-11 Rain and warmer temperatures
Leaves and rain water fill the pool again.



At this point it's all finishing touches. The ground will be leveled and graded out. Gas meter hooked up. The inside of the pool will be finished and the irrigation completed. There is still quite a bit, but if the weather stays steady, it won't be much longer.

Caleigh's Pool - Week Three

Week three has been slower than the first two mainly due to freezing temperatures. The deck couldn't be laid with the chance of freezing. With the week Caleigh had, it's probably better that it worked out the way it did though. If the weather cooperates we don't have much longer until it is finished. Enjoy the week in photos.

Day 10 - Gas Plumbing Covered 12-5-11

12-6-11 through 12-8-11 Inclement Weather
Rain and freezing night time temperatures.



Day 11 - Deck Poured and Salted 12-9-11
The salt is sprinkled on top of the cement to add a texture to the final product.

Eye Troubles

This has been one heck of a week. Between Caleigh and Eric, our family of three showed up to 11 doctor's appointments. Eleven. I'm pretty sure that was a record for us. A number I don't want to repeat anytime soon.

Eric is doing good. He had a regular doctor's appointment and also several dentist/endodontist appointments. His root canal is healing well.

For Caleigh, her trouble started Saturday morning with a bloodshot left eye, some nasal congestion and she complained of a headache. I was thinking allergies, so we laid low all weekend. Monday morning she was still feeling yucky, so I called the pediatrician to see about a different allergy medicine. All children's allergy medicines have some sort of sugar to them. We haven't found one that Caleigh can tolerate yet. I went that afternoon and picked up a sample of a different nasal spray. The age on that one was 6 years old. We decided to wait until the morning to give the first dose just in case she had a reaction.

Tuesday morning only the eye issue was remaining and the skin around her eye was pink and swollen. I thought, ok, so it must be pink eye. We didn't give the new medicine. I made an appointment and saw the nurse practitioner that morning. She didn't think it was pink eye, but maybe an irritation caused by allergies that was trying to get infected. Not contagious. She did give us some drops as a preventative and we started those as soon as we got home. They burned horribly, and Caleigh acted like she wanted to crawl out of her skin when we put them in.

Wednesday we went ahead and had PT and we stayed home the rest of the day. By Thursday the redness on the skin had spread and at this point I was getting a little worried. I made another appointment and we saw the pediatrician that morning. She stopped the drops and switched to an antibiotic ointment. She noticed some white spots in Caleigh's throat and noted it was red as well. The rapid strep test was negative, but she sent it off for culture. She told me to do the ointment and then call her the next day with an update. At this point she was thinking it was conjunctivitis, pink eye.

Friday morning Caleigh woke up with tiny blisters, about 4-5 along the upper and lower lids. I called the pedi again and she told us to go to the eye doctor. At this point I was thinking it was one of two things. Either a fungal infection or a cold sore.

We got into the eye doctor and it ended up being Ocular Herpes.

Now I've had fever blisters, cold sores, whatever you want to call them, for as long as I can remember. They pop up at the most inopportune times in my life. School photo day, weddings and basically anything big and stressful. I get them from being sick, stressed, eating too much chocolate, hormonal issues, weather changes and getting too much sun exposure. Pretty much at any moment. The difference here is that mine are always on my lips or nose. As a kid I was told horror stories about people getting them in their eye from not washing their hands when they have one. Because of this, I'm a crazy hand washing lady when I have one.

The thing with this virus is that you can be exposed at any point and then it just lays dormant until it is triggered to come out. The articles that I've read suggest more than 25 million people have the facial type and only about 500,000 with the ocular type. Leave it to my kid to get the more rare version. My family has history with these things and I'm sure at some point I gave Caleigh this virus. In fact, I've had one fever blister after another for the past month. The thought that I gave Caleigh something so incredibly painful is making my heart hurt. It sucks. We can't even use the over the counter numbing ointments because of the location.

Ocular Herpes Simplex is a different ball game. It's kind of scary actually. It can cause scarring to the cornea and even blindness. The outbreak that she has right now isn't on her cornea. It actually started in the white of her eye. We have an ointment to put on 5 times a day but it doesn't take the pain away. We also have an oral medication to keep it from spreading. The medication contains sorbitol, a sweetener, that we haven't experienced yet. If it's like the other sugars, she probably won't be able to take it, but we decided to try. As of this morning, she threw up the dose, so we'll see. We take her back to the eye doctor in two weeks.

The strep culture at 24 hours was still negative. Most likely she initially got a virus which caused the congestion symptoms, and consequently, her eye to breakout. We will watch her very closely while it heals and add this to our ever growing list of diagnoses.

We also had appointments with neurology and Caleigh's surgeon this week too. Neurology was fine with no real changes. We will continue to go up on the Artane as Caleigh tolerates it. We will also be meeting with a team, working on getting iPads paid for by insurance, in January. They need someone familiar with the programs and we need help with positioning, mounts and independence. I'm hoping to get a little something out of it, but I don't have super high hopes.

Tuesday morning was our appointment with Caleigh's surgeon. He is actually moving to Eastern Tennessee Children's Hospital in Knoxville to be the chief of surgery. He will also teach at The University of Tennessee. His move comes from the need to be closer to his parents in Atlanta as they get older. We sat and talked about the old days, how Caleigh is doing now, our options if future surgery is needed, his partners and his decision to leave Texas. He tried to get us to move with him. I can't express how I feel about this man. He's like family. Such a selfless man. He has saved our daughter repeatedly. He is our safety net. When we walk into a room we don't have to go over anything with him. He knows Caleigh and that is a huge relief. Caleigh and I made him a going away card and he gave us his contact information at the new hospital. It was a sad appointment that brought back a lot of memories for me. He will be greatly missed. We are happy for him and his new journey. We left with a "cross our fingers and pray that Caleigh doesn't need anymore surgeries" comment. I have a feeling this won't be the first professional in Caleigh's life that we will have to say goodbye too. That's just the way life is.

Caleigh's Pool - Week Two

This past week has been a busy one. Our backyard was constantly buzzing with different crews. The construction really seems to be flying by. We are enjoying the progress. Here's the week in photos:

Day 5 - Gas Plumbing & City Inspection 11-28-11




Day 6 - Rocks Delivered, Sand Delivered, & Electrical Work 11-29-11












Day 7 - Rock Work & Irrigation Cap 11-30-11








Day 8 - Complete Rock Work 12-1-11




Day 9 - Decking Form, Steel and City Inspection 12-2-11