Aquatherapy

This week is the first time in a long time that I did not cry at hippotherapy. I guess I missed it after two weeks away. I was placed on Sunny and did not even fuss. I waved happily at my adoring fans on the sidelines. They always cheer for me when I ride by. I started riding 8 months ago, unsteady, not able to sit up on the horse; I required a pillow in front for support. Now I just sit on a quilt with nothing in front, it’s flat. I am so strong that I sit up straight and can even grab rings or open the mailbox at our pit stops. All of this from on top of Sunny.

Dr. Sevilla is my new pediatrician. We visited him at his new office on Monday. He was impressed that we’re going to the St. Louis CP center in July. He’s known for being a holistic doctor and does not look down on the fact that I receive alternative therapies. Whatever helps me do better, he said. It didn’t bother him that I was trying to turn his computer off while discovering his floor. I also opened all the drawers and took out whatever I could find. I needed to know exactly what was going on there.

At OT, I didn’t cry either. What a relief for everyone. I told my mom goodbye and was ready to work after she walked out of the room. I know she comes back to get me and playing with Ms. Mary Ann is a lot of fun. I went on the log swing and fell off, on purpose, several times. Everything is padded so it’s fun to fall. I also climbed up the slide and sat on top for a while before coming down. This week we played the Memory Game. I flip all the cards over and win! I'm learning to take turns. Right now, it's my turn every time.

I understand when someone tells me to use two hands or sit up. I will follow directions as soon as I eat whatever interesting particle I found on the floor. The top of my shoes get worn out and the soles of my shoes still look brand new.

Aquatherapy is an hour of though work. Ms. Cindy is an OT and she incorporates that in the water. I saw her for the first time yesterday. We met at the park pool. There were lots of other kids there with their summer camps. I just thought they were there to be with me. She made me do front crunches, side crunches, lots of stretching, reaching, kicking, inner tube stuff, all in the pool. After that, I was pooped! Good thing we met the lifeguards too, just in case. Then she stayed and helped dress my top while my mom dressed my bottom. What a gal! Thanks to Jake for referring me to her. He sees her too. We're going to Jake's for a play date tomorrow.

At the library, we sang with Dave Moran and his guitar. I found a nice little family to sit with and pretended I belonged there. They didn’t seem to mind. My mom sat with Jake and his nanny, Stefanie, in the back. I kept seeing her move her mouth and wave at me. I wonder what she wanted. I sat sideways to have one ear on the music and the rest of my focus was on a television cart with a dvd player. How could I reach those buttons? I crawled all over the room dodging kids who stood upright and ran past. Eventually, they all had to sit down too. I had the right idea.

Elmo's Lift and Look Book is my favorite. I ask for it every night. I have recently learned shapes. My page of preference is the one with the entire alphabet on it. You can flip open each letter and see what's hiding behind it. One time, when I was helping myself, I flipped all the letters open and tore them out. They have since been repaired. Nothing that clear packing tape and a sharpie marker couldn't fix. Now, it's indestructible and has a glossy finish.

I still don’t sleep well at night. I call out in the middle of my sleep even though I’m not really awake. This usually occurs between 2 and 4 a.m. I don’t know how to self-soothe. I am also having troubling pooping again. They are both most likely intertwined. Bummer.

Saturday Fun

Here I am at my Saturday Gymboree class. The bubbles are my favorite part. I am getting better at climbing and sliding and I crawled on my knees, not my belly, the whole time. I had so much fun that I took a nap when we got home.

Playtime

I had a massage with Jim this morning. He said my hamstrings were tight and that I had the leg flexibility of a middle-aged man. At my age, my legs should be able to stretch to my forehead or thereabouts. I can't quite get there, but Jim has been away for two weeks. Maybe I should eat more gummy bears and calamari. That would surely make me stretch further.

After Jim, I went to Talan and Hailey's house. Hailey read to me as I hugged and leaned on her. She also wrote some numbers down for me to identify and let me draw on her floor with a marker. This is my kind of friend. Talan has PVL and CP as well. He has been motivated to stand by lots of standing up type toys. His mom goes to consignment shops and finds them. We found a play yard today, brought it home and cleaned it up. When it was all put together, I did not want to get out of it. I stayed inside and tried pulling myself up a few times. It's working already. I could possibly be pulling myself up to stand soon. Now if I can only remember to use both hands. Then it wouldn't be so tough.

After my eventful morning, I took a three hour nap and when I woke up, my daddy was home from a long week away. I was attached to him for the rest of the day and night. He read to me, we played video games, and he helped me use my right hand. What a guy!

Rainy Thursday

I slept all night in my bed last night without a hitch. I am looking forward to doing this more often. I need to practice, ;p. It makes me feel good the next day.

It was rainy out this morning. I went to the library. There were only five other kids there, including my new friend Jake. His Nanny Stephanie brings him. Jake sees an aqua therapist once a week and thanks to them, I am going to see her too, starting next Wednesday. She is also an OT so she incorporates OT in the pool. I'll be distracted by the water and hopefully won't notice I'm receiving a treatment. There's a pool at a nearby park and that's where we'll meet. Too bad Jake and I can't go on the same day. Our therapy schedules are too tight. Even though it's summer, we get no break.

I finally pooped after three days. I have been taking gummy vitamins and believe they are the constipating criminals. I suddenly felt light and airy. Then, I pooped again.

The rain didn't last all day. It was sunny out this afternoon and I got pushed around in my blue car. Up and down the sidewalk as I steered and honked. We were only out a few minutes, but I got really hot and started acting lethargic. I leaned my head back and my right side got tight. My mom put me in the shade and when she knelt down to check on me, my right leg was twitching. We had to take my hat off to keep me cool, my head was soaked in sweat. We rushed back home. This twitching has happened once before when I was also really hot and outside. It's kind of scary. Must remain cool. That will be hard to do in my area of residence, Florida.

I played online with Elmo today. He had me press keys on the keyboard and he identified whatever I chose. I played three times. I cried when it ended. I prefer dramatic endings.

My new booster seat came in the mail and I ate dinner at the table tonight. If it didn't have a belt, I would have fallen out over three times. I was more busy leaning over the edge and dropping things than actually feeding myself. Somehow, food did manage to get into my mouth.

I am a head banger. I gave myself a nosebleed this evening. I banged my head on the ground in frustration. Don't worry, the stain came out. My nose is fine too.

Apple and Potato

I was sitting in the back of the shopping cart at Whole Foods yesterday, when suddenly a bag containing two apples was placed beside me. I was desperate to get the apples out, "Apple, apple, apple," I cried, but it appeared I had to rescue them myself. The cart starts moving, stop and go, more items get piled in all around me. I had to focus and save the apples. I grabbed a hold of the bag and shook. This motion also made me shake and it's hard not to fall over in the back of the cart when nothing is stable. I got back up, freed one apple, then the other. I was so happy to be able to touch them and hold them. They were kinda heavy so I placed them in the bottom of the cart. To reward myself, I leaned over a took a bite. Then I took a few more. It was worth the struggle, they were yummy! We paid for both partially eaten apples, along with the rest of our groceries, and went home.


I made a potato head at speech today and I wanted to share my creation with you. I had to ask for each piece, without peeking, and I put them where I thought they should go. Voila! My masterpiece.

In other news, after many leaks and outfit changes, I seem to have outgrown size 4 diapers (sorry Oma)! I guess my growth spurt really has kicked in. We gave my old diapers to Talan at therapy. We're the same age, born a week apart, and I weigh 7lbs. more than him! We're going to play at his house on Friday. He has a big sister, Hailey. She's 8 years old. I screamed with excitement when I saw her today. She comes to therapy now, since it's summer, and she cheers me up when I'm in the walker. I didn't even cry today. I am always happy to see her.

I like mango juice. I've had it two days in a row, and finished a big boy box of juice in one sitting. That's over 6 ounces.

My sleep patterns are mysterious. While asleep, I call for mommy or daddy, and fuss until someone comes. I've been in a big boy bed for about two weeks now. It's a full-size bed and we attached a bed-rail to one side. The other side is against the wall. I take 2-3 hour naps in it without a fuss, but nighttime is a different story. When I am past the first sleep cycle, I can't get comfortable. It's usually between 3 and 4 a.m. I toss and turn from that point on, crying out, but not completely waking up. In the morning, I am not well rested and cranky. Since I have more room to roll around, I like staying in my big boy bed, as compared to the toddler bed, but I wish I could sleep through the night. At least I am out of my parents' bed. It was getting crowded in there. One thing at a time, I guess.

Look here

In a follow-up visit with my ophthalmologist, it is evident that my strabismus remains unchanged. Above, I am with my dad on the balcony of his building and you can see my eye wandering. He recommended surgery, again, but keeps scheduling follow-up appointments to try obtaining proper measurements. I try to keep him away from me. So far it's working. Each time, he gets a little more measurements and I get a little less eye surgery. I'm delaying the process.

Apparently, it is a fairly common procedure for kids who have CP. I'll stick to wearing sunglasses.

2 Year Check-Up

Here is proof, I am standing. Just so you know, I achieved this position alone. Please hold your applause... Ok, that's long enough :p . I am happy to be standing and yes, it is still hard to do.

I visited my pediatrician yesterday, Dr. Yonker. It was time for my 2 year check up. I weighed 27 lbs and was 35 ¾ inches tall. That's just shy of three feet. Sounds pretty tall to me. Dr. Yonker was surprised to hear me sing the alphabet, count and crawl across the floor. It saddened us to hear that she is closing her office and retiring next month. Apparently she needs a new partner and cannot find anyone willing to work the hours. Since we will no longer see her, she provided us with a school entry exam form which states that besides my physical delays, I can full participate in school activities, including physical education! We had a group hug. She has been with us from the beginning and we'll miss her.

What we won't miss is the crunchy exam table paper or the shots. In addition to ordinary vaccines, I had to get RSV shots every month for about 10 months (supposed to be 12, but they ran out) before the age of one. I therefore have port-traumatic stress. Next doctor.

Story time is back in session at the library. I went yesterday and met a new friend, Jake. Jake has Cerebral Palsy also. Jake and I share many interests. He rides Sunny at hippotherapy and sees Ms. Amy for Speech. I also ride Sunny and see Ms. Amy. It's a small world. We have a lot to talk about. Now, if only Jake could talk... I went back today to meet Jake for lap sit story time. I may be a tad too old for this class. Most of these kids are just learning to walk so it's easy for me to knock them down. Have you seen my upper body muscles? I certainly towered over all the kids there and I was more of a "bully" that a friend. I said "Hi" to a few of them, but they did not respond. I took their toys away and even smacked a couple kids that got too close. They need to motivate their articulators and speak up. My mom had to step in a few times to apologize on my behalf, dust off the babies and then we exited (with Jake) quietly. Discipline was in full force. I'd better stick to going Thursday only, for safety purposes.



We have been referred to Cerebral Palsy Center at St. Louis Children's Hospital by the PT at hippotherapy, Ms. Mary. Apparently, they are the best of the best. We called for an appointment, they sent us a package to fill out and requested my latest therapy reports and a homemade dvd. Above is part of that dvd, crawling. And I did it on queue. We were finally able to complete everything and mail it out this week. Apparently there is a waiting list. Hopefully we can get an appointment and get evaluated. We have been told that at your appointment, not only will you get examined by the doctor, but you will also be evaluated by their team of therapists, including orthopaedics. We're looking forward to their advise and suggestions for my future.



My Oma visited last weekend and brought a wheelbarrow for me. It's wooden, homemade and has my name carved into the front. Her friend made it for her, for me. I would like to publicly thank Mr. and Mrs. McCue for my wheelbarrow. I like to put stuff in it and drag it along the floor. Maybe it will motivate me to pick it up and push. Then I'd be a multi-tasker! Thank you. Also, thank you oma (and grandpa) for always thinking of me.

My mom used to play a Regina Spektor album several months ago. There is a song - On the Radio, which she started singing again last weekend, and guess what, I sang the chorus. I remembered it right when the song began. My memory is serving me well. It's working! It surprised everyone to see exactly how my mind works. SAT's, here I come.

My friend Emma made it home from the hospital and is recuperating. She is fighting a tough fight (Left Hypoplastic Heart Syndrome) and she does it so bravely, yet daintily at the same time. She thanks you for all your well wishes towards her. I thank you too.

Standing

Hello. I have some good news. I pulled myself up to stand! I've done it a few times now. I've been working on it for a while, but now I've done it three days in a row. I can't quite get my feet directly under me, but I am learning to ask for help when I need it. My feet just need to communicate better. We're still working on that part.

I got a new glove for my right hand in OT today. It's a big boy glove. It keeps my thumb out and stretches out my palm. I still give my therapists an attitude and refuse to work with my mom present. Even without her present, I throw tantrums and cry about half the time in PT and just a little in OT. PT is quickly becoming my least favorite now, whereas OT used to be.

In OT, I go on the swing, climb up the stairs to fall into the ball pit, play with puzzles and draw. Today, I drew a picture. It's obviously abstract art. One might interpret it as being a giant red tornado blowing the evil vegetables broccoli and carrots away. We'll try cauliflower this week.

In PT, I did manage to stand up against a wall with nothing in front of me. I held that pose for about a minute. Yep, I supported myself. Strike a pose.