Sunday, August 25, 2013

One Crazy Summer

A lot of people have been asking about the mysterious therapy program that is taking up all of my summer, so I though I'd fill you in on what we've been doing. Last February, my mom went to a three day training seminar for parents put on by The Family Hope Center. They are an organization that develops neurological rehabilitation programs for people like me. They are very intense and not for everyone. In April, our whole family went to the center, in Pennsylvania,  for my evaluation. We spent two VERY long days with the staff and other families. It was a lot of work, but fun too. Everyone was very nice and welcoming. When we left, they sent us home with a program that would take about six hours a day to complete. We slowly worked up to the six hours, and by the time summer came were ready to go! Here are the specifics:

Sensory Program-
There are four components to the sensory program: vision, tactile, auditory, and olfactory/gustatory.

In the vision program we use a flashlight to stimulate the light reflex in my eyes. For one minute we shine the light in one eye every six seconds, and then the other eye. After this we use an illuminated  ball or other light to help me learn to track objects better. The final part is picture identification.  We have three sets of three cards that are black and white or may have a little color. Each picture is identified with a single word. We do the vision portion 10 times each day.


Light Reflex
Follow that ball!
Object cards
Next, is the tactile program. For this we use three sets of opposing textures (i.e. soft and rough) and rub them all over my skin. This is to help me be able to feel my body more easily and also to desensitize my nerves. Next, I do a self massage. This also helps me understand my body better. Someone helps me use my hands to feel my feet, legs, arms, belly, etc. The last part of the tactile program is for pain sensation. For this we use four or five toothpicks put together in a bunch, and then put poke them lightly on different parts of my body- arms, legs, feet, hands, belly, etc. this is to help me have a more normal response to pain. Don't worry, it is really not that painful! We have to do each of these parts five times a day.

Hey, that tickles!

Ouch!

 For the auditory program we use nine different sounds each week. We use three sounds in each session, which lasts about a minute. During this time a sound is put on my right or left side and I am supposed to find it with my eyes. This is really hard for me to do to the left side, but I am working hard! We do 10 sessions a day.

The last part of the sensory program is olfactory/gustatory, that's smell and taste. We have 5 sets of smells/tastes that go together; some of them are not very pleasant. First, I am presented with a smell and followed by a taste that goes with it somehow. We are not exactly sure how they came up with the pairs- because they are quite odd! For instance, the first smell is of burnt toast or paper, and the taste is something bitter, like unsweetened chocolate or coffee.

Deep Breathing Program-
This part may look and sound a bit scary, but really it is one of the most important parts of my program. We use something called a "reflex bag", which is a plastic bag with a small vent in the bottom. We put this over my mouth and nose which causes me to breathe deeply, something I rarely get to do because I do not move very well on my own. Once I take 30 breaths I am done- but we have to do this 35 times a day! So far we've only gotten to 26! This is like my aerobic exercise!
One and two and three and...!
I can do this!

Locomotion Program- 
There are two parts to the locomotion program: coordination and crawling. Another name for coordination is patterning. This is where we have three or four people move my arms and legs in a crawling pattern. We do four sets of ten minutes. This wears me out quite a bit, but not as much as the crawling. Right now, I cannot yet crawl, so my dad built me an incline plane that allows gravity to help me get the idea of moving my body down the "slide" in a crawling motion. I have to be on the incline plane five times a day for five minutes each.

Reflex Integration-
We all have reflexes when we are born that usually get integrated into our bodies and help us develop skills. Since I did not develop like most people, my reflexes are not integrated properly. There are different methods for trying to integrate the reflexes, but we use a cold laser and Quantum Reflex Integration method. It consists of using a low level cold laser and putting it on reflex points on my body in a particular order for each reflex. This is usually an easy part of my day because I can just relax!


Hydrotherapy-
This is my favorite part of the whole day! I get to spend 40 minutes in the hot tub! I get to work on swimming and movement skills. I have a really cool life jacket that lets me float around all by myself. The hot tub is a little small, but when I'm in the pond or a pool I love to kick around and move myself!
This is the life!
Mild Hyperbaric Oxygen Therapy-
You may have heard of HBOT to treat a variety of conditions. It is considered alternative treatment for cerebral palsy. I have a chamber in my room that pressurizes to 1.3 atmospheres. We don't use oxygen tanks, just regular room air. I stay in there for about two hours, four days a week. My mom or dad come in with me and we read books or do Facetime with Grandma! Or, as you can see, I also sleep in there!

Chillin' in the Chamber
So, THIS is what I've been doing all summer! And it wouldn't be possible without my girl, Kayla! She has been helping mom with all of my program. She is AWESOME! I am so sad that she is leaving to go back to school next week. We will miss her so much! She is studying to be an athletic trainer at Springfield College. She is caring and fun- we had a great summer!

My Girl

Tuesday, July 30, 2013

Dream Day Cape Cod: What an Adventure!

The highlight of my summer so far was our family camping trip to Camp Nan Ke Rafe. This camp is in Brewster, MA- just 20 minutes from my house! It is a camp for special needs families to relax and have fun. The organization that makes this possible is called Dream Day Cape Cod. Because of their efforts, our 5 days at camp were completely free! My family was so thankful for this opportunity. Here are some highlights of our week.
 
On our first night, my Mema came with Liam, Addy, Mom and me. We stayed in a cabin. I got to sleep in a bunkbed! It was so hot the first two days! We also had a camp fire the first night. All of the counselors did skits and sang songs. We also made s'mores!
 
Outside Cabin #2



 On the second day we made some crafts, went fishing and canoeing. I caught a fish! Mema had to go home, but Dad came for the rest of the week!
Addy making some Xmas ornaments

Waiting for my crafts
The fish count for the day!





Addy and Mema at the pond



















Mom and I canoeing with Counselor Megan
Later on the first day we made tye-dye t-shirts. Then we had a carnival with games and karaoke. 
Liam getting ready to dye his shirt
Mema and Addy















Playing carnival games with my family

Fun with hula hoops!





















My carnival trick!
 On our third day we did some more fishing a boating. 



We also did some really fun activities like Paint the Counselor, arts and crafts and face painting. It rained a lot on this day, but we still had fun!

Painting Counselor Jenny

Painting with Dad

Aargh, matey!
With our new friend Maeve!
 On our fourth day we did the low ropes course and climbing wall. We all worked together to complete the elements. I got to try out two of them. Here I am walking along a beam with some help from Megan, Emily and Liam.

What a great little brother!

Liam on the climbing wall
Addy on the climbing wall

Liam and Addy working together




































We went to an Orlean's Firebird's game with our new camp friends.

On our last night we had a camp fire with more skits and songs. My dad even got to be in it! Everyone got camp awards and mine was for being Mr. Cool- they all liked my shades.
Our fun camp counselors

See my Dad?

Award for Mr. Cool
On our last day we went whale watching! We saw three finback whales, but didn't take any pictures! One of our favorite things we will miss about camp is our new friend Maeve- she has a very bright spirit! Here we are playing in the sprinklers and saying goodbye.
Staying Cool in the Sprinklers

Bye Maeve- we'll miss you!

Wednesday, June 12, 2013

A Special Night

Last night was a big evening for my classmates and me. It was our annual SEALS Art Show at the Yarmouth Cultural Center. All of my teachers worked really hard to put together all of the art we created throughout the year into one giant show! There were students from the middle and high school there too. So many people came! There was a slide show, snacks, silent auction and display of our adapted tools.

Here are some pictures of the evening.
Mrs. Johnson, my teacher presenting gifts

Ms. Pat (our nurse) and Me


My best bud, Maeve




Slide show pic of me creating

More slide show pics













Slide show of Maeve and Me
My self-portrait
Mr. Depin (our principal) and Me in our ties!
Liam, Addy and me with my friends Kacey and Taylor

The poem underneath my self portrait


Addy always trying to get a free ride!

Addy pointing to my salamander

Our Tall Tall Grass Mural

My wonderful Mrs. Johnson

Snowy Day Mural

Pie in the Sky Mural
On my way home!





I'm so proud of my work!




Stay tuned for more end of the school year excitement and my intensive therapy program this summer!

Tri For Kai- 15 year old Edition

To celebrate me turning 15 we signed up to do a triathlon! Today I raced the triathlon as MYSELF. I have always raced in the past with Mom a...