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