Progress Report

Here's a list of fun and exciting things Caleigh did this past week:

• While sitting on the potty, just before bedtime, Caleigh looked up at Eric and I and said {with her natural voice} "All Done, All Done." Clear as day, and yes, she was All Done using the potty.

• While adjusting the straps on her new jogger, Caleigh wasn't pleased with the pulling and tugging that I was doing. She looked up at Eric and said "oooo,Daddy" in the sweetest little voice. It pretty much said Daddy Save Me!

• Caleigh has climbed out of her tomato floor chair twice. Once I didn't see her do it and thought that she probably arched her way out of the chair. The second time I watched as she used her arms and legs to catch herself as she gently landed on her belly. Head up off the ground the entire time. The episode of Dora she was watching was over so I guess she wanted out of there.
  

• Last night I put Caleigh in her crawler and then went into the kitchen to put some dishes away. I could still see her while I was working. Caleigh crawled right over to her ball-pit and put her arm up over the side and then put her other arm up on the side so that she could get in the ball-pit and play. Plus she likes to chew on the side of the pit. This is something that we do in PT all the time. We have actually been giving Caleigh a lot of assistance with the getting up into the ball-pit part, but now I know if she wants to do it...she will.

• Eric made some tilt adjustments to Caleigh's Kidwalk gait trainer. He leaned it as far forward as it would go. We put some socks that have shoe bottoms on Caleigh and headed outside to wash the van. With Eric coaching her along the way, Caleigh proceeded to walk up and down the driveway. For an Hour. The steps weren't perfect although she did alternate legs the right way. The ankle, foot position wasn't great. Actually, I'm pretty sure PT's around the world would have cringed at the sight. BUT, Caleigh was moving on her own in an upright fashion ALL BY HERSELF! In recent days her enthusiasm isn't as high about walking, but Caleigh is still trying and doing great.

• This weekend I made a foam core keyguard for Caleigh's iPad. This makes her fine motor issues interfere less when she is trying to talk to us. So I sat down with Caleigh to ask her if she liked the new keygaurd. She said yes. I asked her if she wanted to keep it on the iPad. She said no. I said, "so you want me to take it off?" She said yes. Then she proceeded to chew on her hands. I had more questions in mind to ask Caleigh, but she was ignoring me and continued to chew on her hands. In my sternest mommy voice I said "Caleigh stop chewing on your hands and answer mommy." Caleigh reached up and hit the No button.

Uh, wait a minute, did she just talk back using her iPad?

I told her not to tell mommy no. She reached up and hit the No button again. Seriously!? In true 3 year old fashion Caleigh is now talking back. Sure we hear uh-uh when she doesn't want to do something on occasion, but using her device to do it is just comical to me. I've always heard that the 3's are worse than the 2's. Well see how the next 10 months go! I just sat there and laughed!

The Start of Fall

Summer is officially over. The pool has retired, drained and been stored in the garage for a few weeks now. The tiny blow-up pool that lives in the shade didn't stay warm enough when the temps hit the 90's, plus we've had some rain. I already miss swimming with Caleigh. It was such a great part of our day.

This week we took Caleigh to the eye doctor. Apparently, we showed up on the wrong day {their opinion} but they saw us anyways. It only took 2 hours. We all decided that we should wait on any type of eye surgery until Caleigh's Artane is at a full dose. This should be in the spring. We are going to go back for a check up in 3 months.

With the coolerish weather, Caleigh has been tagging along on my morning runs in her new jogger. It's fabulous really. Light-weight and vented on all sides so that Caleigh doesn't get hot. I think it's probably too late now, but we plan on putting one of those battery powered fans inside the jogger with her when it gets warm again. I asked Caleigh what her favorite part of running with Mommy is. Going over the bumpy bridge or going fast? The speed queen that she is said she likes going fast. Little does she know that Mommy doesn't really go fast! Running has definitely replaced swimming this past week.

I'm really enjoying teaching Caleigh everyday. She can now sight identify M, A, T, 1 & 11. Caleigh can also tell me which letter a word starts with. An example would be Apple starts with A. She probably identifies letters and chooses the start letter correctly about 80% of the time. I just started trying it this week.

Everyday before we start the lesson we put the number of the day on the calendar and we put a weather stick {popsicle stick with picture taped to the top} in a corresponding day cup. We're usually outside in the mornings so I talk about what the weather is doing then. When I lay out the weather sticks in front of Caleigh and ask her to remember what the weather was like. She chooses between: snowy, rainy, stormy, cloudy, partly sunny, sunny & windy. That's 7 choices! I've never given her that many mainly because of the physical logistics. For the past 18 days, Caleigh has chosen the correct weather stick Every. Single. Time. I would say things like "remember the sun was bright in your eyes this morning" or "it sure was bright outside but we couldn't really see the sun." Probably for the past week I've tried to stay quiet and just let her choose without any hints and it's worked. I'm pretty sure we have a future meteorologist on our hands.

A sign that Fall is here....Caleigh and I are watching an Elmo Christmas special that I have on our DVR. It's one of her favorites, but it just feels wrong to watch it during the rest of the year. Honestly, if I have to watch one more episode of Dora.....

Nope, scratch that...

At least we are in our comfy home and able to watch what we want to on this rainy Saturday morning. A blessing for sure.

Our Week

This past week was super full. I feel like a broken record lately, but there just doesn't seem to be any down time.

We went up on Caleigh's Artane dose on Wednesday. She started having liquid stools with the increase, but things are starting to slow down. We've seen some little improvements here and there, but it's hard to say if the Artane is the reason for those.

We made it to the zoo once again and Caleigh did even better the second time. I enjoy the change of scenery, it's nice.

Friday night the med port on Caleigh's feeding tube came open, which is totally my fault because we usually wrap it in press-n-seal. I was lazy and didn't do it. After changing Caleigh's sheets, clothes, & diaper; she was up for the long haul. That was about 1am. I got up and down with her for about 3 hours and then finally climbed into her bed. I listened to Caleigh grind her teeth for about 30 minutes before she finally fell asleep. On top of that one instance, Caleigh hasn't been sleeping well again. She's up needing to be repositioned several times a night and she isn't wanting to fall asleep as quickly either. The other night I counted 9 times that I had to reposition her. I started counting after 4 just for the fun of it. My body is having a hard time making up for the lack of sleep. I'm tired. I hurt all over, but mommies just keep going, huh? Last night Caleigh only got us up once. I'll take it because I do feel a tiny bit better this morning. I'm hoping her recent disturbed sleep isn't from the Artane.

We are also starting the work on Caleigh's bathroom remodel. We've had 2 contractors out this week looking at the job. To receive assistance with ADA accessible bathroom remodeling we have to get 3 bids and go with certain approved contractors. The 3rd contractor is set to come out tomorrow evening. The plan is to take down some walls, widen doorways, replace the sink with a wall mounted roll under sink and create a roll-in shower area. I've got the vision in my head. I just hope it works out the way we are wanting it. The roll in shower will be a blessing. Lifting Caleigh out of the bathtub is getting to be very difficult.

Homeschool Preschool is going well. It still takes 1-2 hours depending on the activities for the day. Most of the time we do it in the morning. There have been a few times that we do it late in the afternoon because of appointments. I can tell that things are soaking in. I integrate Proloquo2Go as much as possible and I think it's helped with understanding for both of us.

This week we also went and picked up Caleigh's new glasses frame. She broke a spring in the first frame so we picked up the replacements. It's the same frame, just new. Luckily they have a great warranty system. We are still going once a week to have them adjusted. She continues to pull them off repeatedly. Tomorrow is the follow up eye appointment. Kinda dreading the whole thing, but hoping it goes well.

Caleigh's Communication - The Review

Awhile back I posted an iPad-Proloquo2Go update. I left the comments open for questions about our process. The number one question that I receive over and over is "what did you do to get Caleigh to the point of using her iPad." So I thought I would use this post to answer that question.

Beginning with talking. We talk to Caleigh all day long and have since she was born. Whether we are talking about the weather or what her clothes look like; we have been running our mouths! Every process of our day is described in detail. We aren't perfect with this. It's an exhausting idea to talk all day about the mundane details. I'm not saying there wasn't silence too. There is. There is also music to fill in the gaps.

Caleigh instantly achieved success with cause and effect toys. I won't spend lots of time on it mainly because general children's toys work great for this. Hit a button and something happens. Easy Peasy for Caleigh.

After cause and effect, we started giving Caleigh choices using manual eye gaze. This was a brief period in our communication quest. Choosing books, pajamas, toys. We would hold up two choices asking her which one she wanted. When Caleigh would stare at one of the items for 5 seconds, and we would count out loud, if she sustained the gaze she would get that choice. Fairly quickly, Caleigh stopped participating. Maybe she was bored or maybe the choice that she really wanted wasn't there. Not making a choice is considered a choice too.

We rapidly moved on to two choices by touch. We would lay Caleigh on the ground with each item on either side of her. We would have her pick which toy she wanted by touching the item. With her limited hand use, laying on her back was the best way to make choices at the time. We quickly learned that Caleigh could identify toys by name. This was a year ago. Summer 2009.

September 2009, we printed out a ton of 4x6 photos and had Caleigh make choices by touching which photo she wanted. The photos were of toys, books, activities and people. Then we trialed a low-tech boardmaker device using those photos. Caleigh did well with it, but had trouble with the pressure needed to activate the pad. Video Here.

We went back to using just the photos for a few months. I went to researching. Then Caleigh's intestines had a set back. We quit speech therapy and hung out in the hospital for the first two months of 2010. When the smoke cleared I took Caleigh's communication into our own hands. Reading the book Schyuler's Monster helped light that fire.

Caleigh needed to learn how to use her arms and hands to make choices more easily. To make her chose with more than a hand swipe I devised a magnet photo system. Caleigh flourished with this and really showed us that our efforts were worth it. Things just kept getting better. Here's the post related to the magnet board.

At this point I threw all the advice we received about Caleigh and the use of communication devices out the window. I looked up the local reps for PRC and Dynavox and set up appointments in our home. Yes, they can do that and I highly recommend it.

Here's my post on our PRC experience

Here's my post on our Dynavox experience

That was April of this year. During this same time the iPad was debuting and you pretty much lived under a rock if you hadn't heard about it. Our OT bought one and let Caleigh play with it during therapy. That was all we needed. A visual trial. The rest is history because Caleigh has been chatting with us on her iPad ever since.

Here's my post on the iPad experience
&
1 month update

Within a year Caleigh has gone from cause and effect to a high tech voice output communication device and that's how we got there. Caleigh has made this process extremely easy for us. She gets it, she understands and she wants so badly to communicate with those around her. We are extremely proud of our little talker.

Playing Hookie

Yesterday we all skipped school. The topic was about being scared and I wasn't ready to take that one on. There is a lot that a 3 year old could be scared of. Our 3 year old just happens to have basically grown up in a hospital which makes it 10 times harder to talk about with her. I needed to think about it.

So Eric made chocolate chip pancakes, we laid around and watched Sesame Street & Dora and then we headed to Dallas to pick up Caleigh's new jogger/bike trailer.

While we were picking up our order we decided that Caleigh needed a bike helmet if she was going to be riding with daddy. Caleigh tried on about 4 different kinds before we decided. Having a smaller than average head size didn't help any. Caleigh had a choice between brown and pink. She chose pink.

I can't even begin to express my Joy over the fact that the helmet has "I love my Brain" all over it! We love Caleigh's brain too!

We made it home just in time for a nap. Eric and I put the Chariot together while Caleigh laid down. The Chariot holds up to 100 pounds and Caleigh's positioning is looking great in it. I need to make one adjustment for her head and it should be golden. The one we got holds 2 children, just in case we decide to have more. I forsee years of entertainment with this thing. Years of walking, jogging and bike riding.

Our OT had to cancel at 2 and Caleigh was up from her nap. We decided to keep on trucking with our day out and head to the zoo.

Caleigh received a zoo membership for her birthday (thanks Kenneth & Gayle!) so we needed to get our pictures taken for the cards. It's been so hot that we hadn't ventured out to do it yet. Yesterday was no exception in the heat department, but we made it through.

We made our way to the air conditioned new MOLA exhibit. It's mainly reptiles and scary (hint, hint) things. Oh, and did I mention it's air conditioned! That made the whole experience even more enjoyable.
After we walked around for a little bit we decided to head home because it was just to hot. With the membership we may make it a weekly event. I think the zoo has tons of learning opportunities.

This morning, after lots of thought, Caleigh and I sat down to do the scary preschool lesson. We talked about how mommy is scared of spiders {like can't move, scared}. Turns out Caleigh doesn't know if she is afraid of bugs, but she did tell me that she is scared of the dark and being poked at the hospital. I also added the feeling scared to her iPad so that she can tell us when she is feeling afraid.

“Cease trying to work everything out with your minds. It will get you nowhere. Live by intuition and inspiration and let your whole life be Revelation.” ~ Eileen Caddy

Flour Power

One of our lessons this week in preschool was to smell cinnamon & flour and pretend to bake apple pies just like grandma does. Taste, Touch & Smell + Pretend Play.

Caleigh said that it was her favorite part of the day and she even tasted the mixture a little.

I don't think I actually prepared the area well. It was messy. Very messy. Best of all, it was fun.

I can't wait until we do it again.

Artane

I wrote about Caleigh having Dystonia back in January. At that time the doctor gave us a prescription for Artane. We filled the script, Caleigh's tummy took a turn for the worse, we hung out in the hospital for what seemed like weeks and came home with TPN. So we never actually started the Artane.

This week we had our follow up appointment with the neurologist. We talked about the Artane and other meds that help with Dystonia. I have concerns about Artane because of the intense side-effects. Toxic Psychosis being just one. I went into the appointment wanting a definite number of kids taking Artane successfully and not running around like crazy children. He assured us that Artane is his number one med for Dystonia and he has a ton of success with it. He was convincing enough for me and I agreed to try it.

While we were there we talked about Deep Brain Stimulation surgery as well. I briefly brought it up and I'm not even sure why! Curiosity I guess. Our Neuro said that Caleigh is an excellent candidate for the surgery and that her type of generalized dystonia is the type that is most successful with the surgery. We're talking BRAIN SURGERY here!! I kinda shut down at that point, grabbed Caleigh's head and said "not now." He then reassured us that even if he wanted to do the surgery and we wanted it too; that they don't even consider it until the child is 7 years old. Great, discussion closed...lets move on.



So we made it home and made sure that the Artane that we had filled back in January was still good and then gave her the first dose that evening. 3 hours later Caleigh was still awake, gagging, retching and crying. I finally got out the iPad and she told us that she felt sick and her tummy hurt. I asked her if she needed to throw up and she said yes. So we decided to give her some tylenol to calm her down a bit. It did the trick and she fell asleep. The Artane only lasts 3-4 hours at peak. So that could have helped too.

The next morning I called the neuro office and we brainstormed the issue. We decided to try the pill form of Artane instead of the compounded suspension that the pharmacy makes up. The suspension has a lot of artificial sugars, colors and flavors to make it taste better. That doesn't matter for Caleigh because we are giving it to her through her button. So by Wednesday we started the pills and she hasn't complained at all.

We won't be up to the full dose until the end of February 2011 if all goes well. It's a very very slow increase and that helps deter the side effects.

So things that we have noticed just in the last few days is that Caleigh is making more sounds and actually is saying a few words. She said Daddy the other morning twice during our school lesson. Repeating what I said. She also told the OT "I do" I do" when she asked her if she wanted to roll down the wedge. She does say "yeah" for yes and "uh uh" for no. The words are coming more and more. They are still not very consistent but it is getting better.

After the 3-4 peak hours on the med I can tell that it is wearing off. Caleigh starts grunting and pushing and basically becomes really dystonic while coming off the med. Over the next few weeks we will be adding a noon and bedtime dose so hopefully that will fix the sudden drop that she is experiencing.

I'm trying not to get my hopes up too much. So who knows if it will work or if Caleigh can tolerate it.

HomeSchool PreSchool

Today was Caleigh's first day of class. Today was also my first day of class. I have to say it went very well.

I decided to go with a "preschool in a box" curriculm and I honestly couldn't be happier. This means that everyday comes neatly wrapped in a bag with all the materials you need and everyday has a lesson plan. I was running around making copies, laminating and stressing out before I found the box set. It is SO worth every penny just in materials alone much less the worry of what to do everyday. I was concerned that the majority of the activities would have to be so modified to Caleigh's needs that it wouldn't be worth it, but I was wrong. The lesson for today only needed one adaptation for Caleigh. Only one. This is a regular preschool kit. I'm sure there will be more, but nothing that we won't work around.

Caleigh paid attention the entire time. She seemed interested too. Today we learned about circles, the color green, identifying her name {which she can already do}, our family tree and apples. We went to the library earlier this week and checked out books related to the subjects. We read a few of those today. The entire lesson took almost 2 hours if you count a potty break and some music time. Caleigh was worn out by the end and I was too. I'm sure it will get easier for the both of us once the routine sets in.

I was a little nervous about what to do, when and how to make transitions. I think once I got the hang of it things went smoother. I actually had tons of fun teaching. I'm not as scared about screwing up my child's education as I was yesterday either. Just jumping in and getting your feet wet is the way to go.