Supinator, activate!

Here is my self-ordered thumb splint. It was prescribed via St. Louis. No one down here has ever seen it before. It has a supinator strap to help me turn my palm upwards. All of this was mine for just $29 (plus shipping). I am happy to report that I could not peel it off today and it's already working. For more information, please see McKie Splints in sidebar.

While my right arm was hanging out, my left arm has finally been able to fill a cup with water, pick it up and dump it over my head. I do it over and over in the bath. It's fun. A new sensation. Not to mention a good stretch.

Yesterday, I told my mom to call my dad on the phone. "Call dad," I said. So she did and here is what followed:

Dad: Hi Gavin
Gavin: Hi Dad
Dad: How are you?
Gavin: Good

It was my first conversation and it wasn't just a coincidence. My parents then asked me throughout various times yesterday how I was. I always answered "good."

Ms. Greta was extra attentive at therapy. I stood in the stander for the entire half hour. I get to take it home on Monday to try before getting my own. Our search for different PT options continues. Maybe we'll go half time to Greta and half somewhere else. We'll see what is available.

Many, many things

I was practicing my flashcards. All the cards I identified correctly went into one pile and those incorrect into another. The following day, after a cram study session, I had already learned some cards from the "I didn't know" pile. Oh, how quickly I learn. Then, after having practiced it a few times, I get bored. I need refreshing, interesting activities. I need to be kept entertained. Otherwise, I begin to wander.

I returned to therapy today, after the big trip to St. Louis. Last time I was here, everything seemed to be going well. That all changed after St. Louis. We told our PT, Ms. Greta, that we had been prescribed more PT. Lots more. Right now I receive 30 minutes, twice a week and I will now requite 60 minutes three times a week. She advised that she does not have that availability.

We did some preliminary searching for new a new therapist to see what else was available. It takes a lot of time to research and review our available choices. Luckily or unluckily, Sarasota is still a somewhat small town and there aren't that many options. That's all there is to report for now.

The evaluation in St. Louis also noted that I don't have a stander. This shocked and puzzled the therapists evaluating me. How can I have a gait trainer and not a stander? Standers come first and build strength and endurance of your legs. On one site, it even says "prepares for gait training." They gave me a prescription for a mobile stander. It is serious equipment and though it requires its user to be genuine, it does not require its user to be humorless. Please click on sidebar to see what I mean.

St. Louis prescribed us a McKie splint for my thumb. It provides thumb extension and supination of my right hand. My old glove never even had a chance. I guess it had premonition of what its future might be (laying in a dark drawer) and took off. I haven't seen it since before my trip.

The McKie splint had never been heard of or seen by my therapists. Needless to say, they will not be ordering it for me. We contacted the company today and will order it ourselves tomorrow. Our to-do list keeps getting longer.

My toys have to come off of the floor and onto tables if I want to play with them. This was more advice from St. Louis. We got a train table this weekend. We are training my brain to think "up" for everything. They give good advice.

I have to gradually increase my standing to two hours a day. I was working on that earlier this week when my dad and Oma were here. Today, however, I took a 3.5 hour nap and refused to stand at all. All that hard work (and nap refusal) must have caught up to me. My right leg was really tight today.

Lastly, I had a pediatric ophthalmologist examine my eyes and they were able to obtain measurements for my strabismus/eye strengthening surgery. They used Elmo to help distract me. How did they know? We have scheduled that for September. Apparently, I can travel back home the day of surgery after surgery.

At the CP center, the doctors all share information regarding their patients. They also all specialize in CP. We're glad we went.

I had Conductive Ed. with Zsuzsi on Saturday. It was my first session and it lasts 1.5 hours. I learned how to scoot myself across the floor while laying on my back on top of a skateboard. It was like driving, only on my back, on a skateboard, and with no license or vehicle. This will definitely be a valuable skill that I can apply to everyday life. But seriously, I have already learned a lot from Conductive Ed. I like the way Zsuzsi thinks. She always moves from one activity to the next and she sings to me! I'll do anything for a song. I snapped and unsnapped beads together with two hands; stood with my back against the wall for over five seconds and no hands; rolled down the ramp (both sides) by myself; learned how to get down from a stool onto the floor (falling down). We did all kinds of cool stuff. My friend Talan watched me and now he wants Conductive Ed. too! Everybody was impressed.

On Sunday I met my CP friends Talan and Jake at YMCA Splash Park. We had a lot of fun. I crawled around in tub deep water and under sprinklers. I was upset about leaving, even though it was way past lunchtime and I had not eaten much. Maybe next time I can visit the slides and food court there.

I am having more issues with sleeping and separation. Maybe it's because I have been with both of my parents continually for many days and we all slept in the same bed in St. Louis. Now, even though I appear sound asleep, I wake up every time they leave my room. We're readjusting now. It involves a lot of screaming and crying to myself once it's bedtime. I even wake myself up for a session, but it's gradually getting shorter as the days pass.

St. Louis, here I come

Woke up early, ate breakfast, went for a walk, took a nap. Now I'm gonna have some lunch and head to the airport. See you all when I get back.

Until then, here's a picture of me from one year ago.

Trip, Coming right up

Tomorrow is our trip to St. Louis. We practiced today by sitting in the Sit 'n Stroll car seat and being wheeled around the house. I didn't want to get out. This is surprising since lately, I don't like strollers. I was even tall enough to reach the magnetic letters on the fridge.

Then I got down and I followed along the "If you're happy and you know it" song. I clapped my hands, stomped my feet (with assistance) and shouted "oh yeah" and "hooray" on queue. I can also open a dvd case with one hand.

I was eating some crackers on the floor and my dog, Rufus, was supervising. I eventually gave him a cracker and once he ate it, I said, "Cracker, where are you" and "Oh no." It made my parents laugh. Rufus continued to supervise and sniff.

I went to Gymboree in Bradenton this morning, since our Sarasota location closed down. There were lots more kids there and all different ages (up to 5). Only one of my old friends from Sarasota was there. My favorite part was rolling down the ramp. I did that like 10 times. A week ago, this would have terrified me, but I practiced this same movement with Zsuzsi this week. It seems Conductive Education is already working. Hooray!

Almost Ready

I got a haircut today to get ready for my trip. I sat all by myself and didn't have a prolonged tantrum as I did last time. It seems that scissor cutting makes me more at ease. Last time they used clippers and I was so afraid of them. The scissor cut I got today was fantastic. I watched Dora on TV, chewed some gummy monkeys and only cried a little; mostly when she was in my face. They take your picture and put it on the wall if it's your first time there. I saw my picture on the wall from last time.

Also today, I drank a whole cup of chocolate milk from a straw sippy cup. I usually reject milk from a cup. New word this week: okay. Example: Gavin, do you want a snack? Okaaay! I emphasize the "A." I also keep up better with singing and don't sing ahead or behind queue. I've been singing my ABC's several times daily. I say my "R" like this "ouw."

Here are some pictures from hippotherapy last week. I enjoy riding Sunny and playing with the rings.

It's been so long...

... since my last entry. Where do I begin? I'll work my way backwards. In case you've missed seeing me (or forgotten what I look like), here I am at my desk:

Notice my muscular arms. And here's an action shot:

Yep, I've been working hard these past few weeks. So just because I haven't been blogging, doesn't mean I've been on vacation. I can eat chicken from the bone now.


Today we saw a conductive education therapist from Hungary for evaluation. Her name is Zsuzsi and I took a liking to her right away. She is Jake's therapist and that's how we found her. She treats out of her house. She has a Master's Degree in Hungary for this, but it does not apply here. She is studying to get her Master's Degree in OT in America. Her background consists of training from Peto Institute, Budapest, Hungary. That's the source. She's selective in who she treats and therefore has only eight patients. Her living and dining room have been converted into a therapy room. She has lots of new and exciting equipment that I've never seen before and couldn't wait to get my hands on.

After all the climbing, rolling, sitting, standing, using two hands, her evaluation of me was complete. I do a lot of neck sitting, which is where I lean my head all the way back to sit up. This is because I have low back strength and low trunkal tone. On a positive note, I do use both hands, and even though I prefer my left, I can bring both to my midline, clap, etc. My legs are weak, especially my ankles. Zsuzsi would be working to increase strength and endurance to this and other areas. We're going to start seeing her every other Saturday for an hour until her schedule allows more. I am a good candidate for conductive education. For more info, see links on sidebar.

I continue with Ms. Cindy and Aquatherapy. We tried a morning appointment, since last time I almost fell asleep in the pool - not good! This week she put a sock on my left hand. I tried to take it off with my mouth. It didn't work. So after not much complaining, I started grabbing the stacking cups and blocks with my right hand. Hooray for me! We have to share a pool with the kids at summer camp, since we're in a public park. I always thought they were there to cheer me on, especially the girls :)

I spent some time with my Oma, Grandpa and Abuela.

I also spent some time with my aunts and uncles. One of my uncles is named Engelbert. I learned how to say his name within a matter of minutes - Ehbot. Why use all the extra letters. I also learned how to work a portable dvd player. I know where "play" is, that's what's important. Play, pause, play, pause. One button does it all.

Elmopalooza is a game I play online. It involves Elmo and the letters on the keyboard. Ms. Amy at speech sat me on her lap and loaded the game for me. She asked me where a letter was and I would find it on the keyboard. Then I would press it to hear Elmo repeat it on screen. That's he fun part. Sometimes he giggles. After numerous turns, she was convinced that I should go pro. I have been practicing at home. Maybe there's a gaming community somewhere looking for someone just like me. I'll keep my eye out.

After weeks of watching him effortlessly pull himself to stand, my friend Talan started walking. This week, he held onto the aluminum walker and took some steps unassisted. On Monday he only took a few. Then on Wednesday, he practically walked down the hall. He really took off. Talan has CP too, but we're complete opposite tone wise. I'm high tone and he's low tone. His legs aren't as stiff so it's easier for him to move them. I've got some homework to do. No more using my seat to walk in my gait trainer. Hopefully I won't outgrow it before I learn to use it better. It's approaching the tallest setting now. Ahh!

We're going to St. Louis this weekend for our appointment on Monday. I have placed a link on the sidebar. I will get evaluated there. Dr. Brunstrom (who has CP herself) is not accepting any new patients at this time, but we will see an ARNP and receive all of the same evaluations. That's what we want anyway. Eventually, at a future appt. the doctor will see us and we'll already have our foot in the door. Wish me luck!

Tuesday and I'm Pooped

I am a more mature boy of two. I no longer cry when my mom leaves the therapy room. I tested this new method out last week and continued with the research this week. This "no crying" action seems to work best. Everyone is happy in the beginning and still happy in the end.

Today at hippo, I was riding Sunny as usual. No fussing, playing rings with my right hand. My fans were losing interest. Each time around the ring, I could see their faces start to turn away and engage their attention elsewhere. They saw me do this last week, who could blame them. I had to think of something fast to keep their focus on me. With the help of my assistants, I quickly sat backwards on Sunny and rode slowly past. I smiled and waved, as if we were in a parade. It worked! They were all left speechless and I received applause and hugs in the end. I've got to keep the routine fresh. I can't wait to read the reviews.

My friend Jake has a stander. When he stands in it, it helps him poop. Maybe it's the gravity? I do not have a stander, but I stood in my gait trainer with my weight on my feet and I pooped too! Hooray!

New words this week include: Thank you very much and muffin. I have also been imitating the singing of various songs. I ask for some to be played over and over. "Again, again," I say. Then I sing. Practice makes perfect.

I pull myself to stand in the tub now. It's more like a lean over the side stand actually. It's tough to do since it's so slippery. My super strong arms and chest do most of the work. My legs and feet come in second.

This week is the first time a wheelchair has been suggested to my family for my growing needs. If prescribed, it would take approximately 3-6 months to receive the final product. No one is anxious to sit me in a wheelchair, but my back needs more support, it would probably be more comfortable for me as I grow. Now, this doesn't mean I will be confined to it. It will mostly be a back up for long outings, like what a stroller does now, since I may eventually be able to walk. If I get tired, I can sit instead of trying to be carried. We can ask about this in St. Louis when we go.