Medical Update

Wow, what is the date? I can't believe it has been over a month since my last post. We are busy at the Goley house! This week I have been schlepped around the Boston area to multiple doctors and specialists, being poked, prodded and evaluated. Luckily, I am a pretty easy-going, roll-with-the-punches kind of guy. Here is a recap of what is going on with me medically. Some may feel that it is TMI- but this is the reality of my life and what kinds of conversations are taking place regarding my care and progress. And, we're off!

GI (gastroenterology) update- It is no secret that I don't have a need for fad diets and weight loss videos, but in fact, struggle to keep on the pounds. I know, I know, you wish you had that problem ;-). I have never even been in the 1st percentile of the growth chart, but have been slowly following my own curve since birth. Some of you may not know that I had a g-tube (surgically inserted into the stomach so you can tube feed through a port) placed at about 2 weeks old so I could eat. I had no suck or gag reflexes so I could not eat orally. Luckily, after about 1 month of being home I was able to start eating and then got the g-tube out when I was 6 months old (sometimes my mom regrets that decision). So now, I eat pureed foods made by Chef Mom. She's not a bad cook- but more variety would be nice. We put lots of things in my food to help me gain weight, like: cashew butter, coconut butter, regular butter, avocado and Duocal (a calorie supplement that is essentially modified corn starch - which makes my mom cringe every time she adds it). But alas, I struggle to meet my weight goals because my muscles are constantly contracting and working all the time.

Sleeping in my big hotel bed!

At this last visit to see Dr. McSweeney (GI doc) I gained over a pound in 3 months! I now weigh 35.49 lbs. and am 42.5 inches tall. Mom and I were so thrilled! The doc was not as excited (she's new- we won't hold it against her). She would like to see me get on "the chart" so I have a little "reserve". So, here we go- upping the Duocal and feeding me like a spring chicken!

I also suffer from reflux and chronic constipation. Not fun. But, we are managing it and I am comfortable most of the time.


On Tuesday night Mom and I drove up to Boston to stay in a hotel. We had appointments all day on Wednesday, starting at 8am.  We got to snuggle and watch TV together. I think hotel rooms are pretty cool.

Waiting for eye exam

Vision update- I met my new ophthalmologist today. Her name is Dr. Fulton. She is a kind, older woman, who is very soft spoken. She knows my previous ophthalmologist from California. We did all kinds of crazy tests and evaluations. First we did a VEP test which hooks my brain  up to a computer and then has me look at a computer with stripes across the screen- the thickness of the lines change with each trial. By doing this they attempt to quantify my vision. Today I showed some improvement- 20 over 130 (technically legally blind, but I can really see). Then they put drops in my eyes to make the pupils really big- that felt weird. They took pictures of my optic nerves too with this cool camera. Then the optometrist, Dr. Bagliere, evaluated how well my eyes work. She said they work great! No need for glasses. So you may be wondering how I am legally blind, but have no need for glasses. Well, I have something called CVI (cerebral visual impairment). That means the processing of visual information to my brain is impacted. So, it is hard for people to know exactly how I see.  Over time, this will hopefully improve as I gain more experience and put meaning into the world.

For the next appointments at the CP (cerebral palsy) clinic, my Dad was able to come along. After getting Liam and Addy off to the babysitter he drove up to meet mom and me.

Waiting for Dad

Pediatrician- We spent about 1.5 hours with Dr. Davidson. She was a very thorough doctor! She had lots of ideas for mom and dad to help me out. Now we have lots more appointments to go to! We got ideas about supplements, toilet training, fun things to do in gym class and some resources that will help mom and dad out.

Neurology- Next we met my new neurologist. He is there to help manage my seizures. Yep- they're back! As a baby I had infantile spasms, which are a type of seizure that occur many times a day (the highest day my mom counted was 89). Once those were treated I stayed on medication until I was about 2.5 years old. Then I no longer needed it. Unfortunately, 70% of people with infantile spasms will develop seizures later in life. Mine started again last October, right before I turned 6. After a few episodes (two of which were pretty scary with trips in the ambulance), mom, dad and doctors decided I needed to start taking medicine again. I've been doing great, but then I had another few episodes two weeks ago- 2 were even at school! Most of my seizures are described as generalized tonic-clonic, and they occur mostly related to sleep. Mom and Dad record me overnight and watch the video the next day to see if I had any seizures. I do not make much noise so Mom doesn't wake up. It is a little scary. We are looking for some kind of monitor that would have an alarm if I started having a seizure. In the meantime, I have to increase my medication. The neurologist mostly manages my meds. I take 3 main things for seizures and muscle tone (mine is really high). We talked today about something called a Baclofen pump. Baclofen is a medication I already take, but it has side effects. With the pump, a little machine is put into your back and a tube delivers the medication directly to the nerves to help calm them. Then you go in every few months for a refill! You don't have the side effects since the rest of your body does not have to process the medication. Of course, putting a pump inside your body has it's own problems. The doc said I am probably too small yet for the pump. I think mom was glad about that for now.

Dad distracting me from the orthopedist

Orthopedics- Our last appointment was with Dr. Shore. He is a pretty cool guy. He gets to look at how my bones and body work together. He is responsible for all of the new braces and equipment I am going to get. We always have to get x-rays for the orthopedist- of my pelvis and spine. Because I don't stand and walk very much, my hips are at risk of not forming correctly and eventually dislocating. NOT FUN. A few years ago I had a surgery to help with this issue- and it has been a great success so far. But for now, I still need to do a lot more standing and walking. I am going to get some new AFO's (leg/ankle braces that help keep my feet flexed, since I tend to point them), some hand splints (to keep my thumbs out), and some type of body vest (it will help my torso be more stable). He and mom disagreed a little bit about the AFO's, but they came to a compromise in the end.

Sitting in traffic watching Beauty and the Beast

By the end of this appointment I was TOAST! Nothing was going to make me happy and I wanted to go home! There was a lot of traffic, but mom got us home in just over 2 hours. After this full week, these are the new appointments we need to make:
- functional vision assessment
- augmentative communication clinic
- PT equipment clinic
- Orthodontist
- Audiology test
- Movement disorder specialist
- fittings for 3 new braces
- Physiatrist

And of course, follow-ups with all of the people we saw today!

Tomorrow a nurse is coming to our house for more evaluation of me! I feel so special! Can't wait to go on vacation to Florida next week, I can barely handle the spotlight!

What.A.Week.

I just wanted to share a few pictures from last week. With Halloween and my birthday, it was crazy busy! As you may already know, I was a pirate for Halloween...

...along with my brother, sister and mom (Dad doesn't like to dress up- you can blame my mom for that!).

 Our first fun event was going to the Natural History Museum in Brewster, MA. They had all kinds of fun craft activities for us to make and do a little trick or treating. My friend Taylor came with to help me make some crafts. Here we are making spooky trees out of paper bags.

Next, we carved our pumpkins. Mom and Dad had to do most of the work because Liam and Addy did not like to get their hands goopy in the pumpkin! I don't mind so much- I love the squishiness! I chose to have my pumpkin carved into a cat. Looks good in the dark!

We figured every good pirate needs a ship, so we made one out of my wheelchair. First mom made a mast from a rug roll she got from a local rug store. Then she wrapped a black shirt around it along with some skulls. The one on top had flashing eyes! Finally, she made a ship out of cardboard. She spray painted it brown and used electrical tape to make the lines. The last touch were some skull lights around the front.

  

I was so excited to ride in the school parade. Everyone thought my ship was so cool! When I went to my first grade class, all of the kids came to look at my ship!

After school we got to go trick-or-treating with our friends Corey and Alana.We got so much candy and lots of people said my costume was the best they had seen all night!

On Friday, November 2nd, we celebrated my 7th birthday! I went to school and got a present from a special new friend who had just met me two days before. She is a student in my school. That night we had some chocolate pudding and whipped cream for dessert after singing Happy Birthday!

On Saturday was my big 7th Birthday Party! Mom was in her birthday planning mode, so Taylor came early to help out! We had so much fun! We played all kinds of game with a parachute and another called Pin the Hat on Kai! But the best part was Trevor the Juggler! He juggled all kinds of crazy things...

 Like Chickens!

My friends got to throw some balls to Trevor and help out with the show. 

After the juggling we sang happy birthday to me and had cupcakes!

Then we went inside and played freeze dance. I got to control when the music stopped and started with a special switch, then I let all my friends have a turn. We opened presents and I got all kinds of fun things: clothes, books, gift cards for iPad apps, AquaDoddle, a hammock, remote control car and a thing that makes a rainbow on my wall!
 Taylor stayed to hang out with me after the party! I love her!

Mom says our "photographer" (friend Liz) has most of the good pics, so we'll post more when we get them!

A Note from Kai's Mom: We are ok!

I don't want to make a habit of hijacking Kai's blog, with my personal "stuff", but at times I feel the need to make a reflection, vent or share a mother's pride. So it is today that I want to address something that I have recently been talking to people about; interestingly, most are strangers. Since I was sharing this information with perfect strangers I thought it was important to let our friends and family in on it. So, I'll have to start from the beginning...

The emotions we felt when Kai was born (see post from Nov 21 2005), were very conflicting. We were elated, scared, worried and hopeful all at the same time. When we started to get diagnoses and prognoses, we were devastated, terrified and angry- which pretty much overshadowed many of the positive things we felt. Everyone around us was worried about us and about our future- but no one could do anything to change what was happening (for the most part). We had such an outpouring of support from so many friends and family over those first few months; it was quite overwhelming.

Kai in the NICU at UCSF

As we started on our path of caring for Kai, we knew very little about raising a child, let alone one that came with seizures, medications and attachments (g-tube). Our plans for everything changed right then. I tried to make things as normal as possible, by taking him places and being hopeful about what might be possible for him- but inside I was hurting. As an infant, Kai looked like a typical child- sure, he cried a lot, slept HORRIBLY, ate through a tube surgically placed into his stomach, and had close to 100 seizures a day- but he was so beautiful!

As he grew it became more apparent that he was delayed, and now here we are today: Kai is in a wheelchair, he does not walk or talk, he wears diapers and he drools. I'm not gonna lie, on paper he looks pretty grim. But then there's that infectious SMILE!

So now, when I am with Kai out in the community we are met with a variety of responses. There are people who make great eye contact and smile, and may even say hello or engage us in conversation. There are people who act like they are not looking, keep their heads straight forward and try to sneak a peek as we walk past. There are others who blatantly stare- with looks of concern, fear, sadness, pity, disgust. It's these last people that really get me. Sometimes I want to scream at them, but of course I never do- they obviously don't understand the joy that is Kai- so I just keep smiling and walking. In one instance, I was walking through Target with Kai and a woman walking by said to her friend, "Oh, that's so sad."

What? He's not sad, look at him! (was what I was thinking). And it that moment I realized that I did not want people to look at Kai and think SAD.

The people who actually engage me in conversation, do so out of concern, curiosity and sympathy- which I do appreciate, and understand (I do the same with others who seem to be in tough situations). But what I tell them, and what I want everyone to know is:

WE ARE OK! 

Happy. Fine. Thriving!

Kai the Snake Eater!

Life with Kai is what it is. Sure, there are days when I feel hopeless, or sorry for myself, or cry or want to pull my hair out, or feel like I need a secretary to keep up with everything- but mostly I am so lucky to have Kai. He has taught me life's most valuable lessons and everyone who takes a moment to know him realizes that what's grim on paper can be truly inspiring in life. If I could take one ounce of his spirit, persistence and happiness- I would be a much better person. It took me a few years to get to get here emotionally, but we got over "sad" a long time ago.

So, don't worry about us, ok?

Be happy with us!

My Favorite Therapy

My old PT and Me at school

People who have CP usually have to do some type of therapy, some do A LOT and others not as much. I am one of those A LOT people. I do traditional therapies at school like physical therapy (PT), occupational therapy (OT), speech therapy, and vision therapy. Outside of school I get to do some other treatments/therapies as well, some people call them "alternative" because they are not "mainstream".

My Marcy!

One method that I have been doing since I was only 9 months old is the Anat Baniel Method. My mom is actually a trained practitioner- but she only works on me. I love my ABM practitioners and miss my Marcy- but will see her next weekend in NYC! We found a new practitioner close to Boston, so sometimes we go up there to work with Matty.






 Another method I do is the Masgutova Method. I have gone to two, 9 day camps that consisted of 5 hours of treatment each day. It was intense. At the camps, the practitioners taught my parents how to do the exercises to integrate my reflexes and my mom does them in the morning before school (on most days). Mom says we might go to another 4 day camp in Orlando, FL in January. 

Art Therapy at camp

Last treatment of the day at camp

I also go to the chiropractor every week and have even done acupuncture and acupressure!

BUT my most FAVORITE therapy of all, is therapeutic horseback riding. When I lived in California I rode a horse named Cinnamon- she was a nice, slow horse. Now I ride at the Cranberry Sunset Farm in Marstons Mills and my horse's name is Capricious. I love this farm because we get to ride on the trails and there are all sorts of games and sounds. On Windchime Way I get to ride under the chimes and they make noise as we hit them, then there is a path that has noddles (like the ones for pools) hanging across the path and we ride through them. There are also pipes that we roll balls through. My brother and sister like to come to the farm too. When I am riding they usually collect eggs from the chickens, or pet the cows Rosebud and Daisy, or walk tot he obstacle course in the woods. One of the best parts of riding here is that I get to sit with someone on the horse. Sometimes my mom rides with me, or Leslie my teacher, or Allison a volunteer. Peter and Bernardo also help make sure the horse knows what to do.

During this riding I am working on having better trunk control and being able to hold myself up. I also have a chance to have my legs spread wide apart (which is really good for my hips which need some work), and Capricious is a big horse!

Kai's Endless Summer

Swinging on our cross-country road trip

We had a crazy summer this year, but it was a lot of fun. We moved across the country and had a really long car ride. We left all of our great friends in Rio Vista, CA for a new adventure on the East Coast. We got to go to my Grandma and Grandpa's house in Illinois and then move to our new house on Cape Cod. We visited lots of friends and relatives all over the country and stopped at some pretty cool places. We even went to Niagara Falls! We spent lots of time at the beach here in Chatham, and I even got to go to summer camp school, where I met my classmates and teachers! 

Niagara Falls

During the last week of summer, we had Camp Mom. During this week we built a volcano, baked cookies, saw a juggler, made a movie and went camping. My mom finally had a chance to edit our theatrical debut: The Three Little Pigs (note- this link will take you to youtube). We had lots of fun making it, but mom said it was a lot of work, so we will wait until winter to do another one. Take a look and let us know what you think!

Fishing in Maine

Painting the volcano

Baking cookies

Dancing in Maine

Petting a hedgehog

Archery at Camp

End of summer family camping trip in Maine

My First Homework Assignment!

My teacher, Mrs. Johnson and Me

This year I am in 1st grade at Ezra H. Baker Innovation School in West Dennis, MA. It is a great school and I am loving it every day. My teacher is Mrs. Johnson and we have lots of aides and a nurse in our classroom. I have 5 friends in my main class, but get to go to my homeroom class for morning meeting, recess, and specials.  When I am in this class I get a special buddy who helps me, and sometimes they get to come to my other classroom and see all of the cool stuff we have there. We have lots of great specials like PE, Art, Music, Library and even Spanish! Today I got to lead the hula hoop line in PE.

Me signing in on the Smartboard

At school I also get lots of therapies. I have special people come to my class to work with me for physical therapy, occupational therapy, speech therapy and vision therapy. I have a really busy schedule! My favorite part of the classroom so far is the Smartboard. Every morning I have to come and sign in on the board. We also get to read stories and play games using a switch. The screen is SO big, which makes it easier for me to see.

My first homework assignment!

Today I had to do my first homework assignment. I was kinda confused at first, but my mom was so excited about this project. It was math homework and we had to count all of the doors, windows and clocks in our house. First, we counted the doors, windows and clocks on the main floor, then we did the same upstairs. To count the doors and windows my mom would take me into a room, then knock on each door (or window) and ask me to count each knock. Then she would ask me how many there were by giving me two choices (I can make a choice between two things by holding my mom's hands and letting go of one to make my choice). In all of the rooms I answered all but one counting question correctly! My mom made tally marks on the page and then we counted the groups of 5. This part was pretty complicated, but I will get there! 

Introduction

I'm Kai!

My name is Kai! I am six year's old and just started first grade. My mom says I am a very special kid! I am different than other kids my age, but similar to them also. I really like to ride my bike and my horse, listen to music, read books, spend time with friends and go to school. I also have cerebral palsy (CP). Lots of people have CP. I do not walk or talk like most people, but am learning ways to overcome this challenge.

Let me tell you about my family. I live with my Mom, Dad, brother and sister. I am a new resident of S. Chatham, MA, but spent my younger years in California..  Here they are:

Getting a ride on Dad

This is my Dad. He is a Senior Chief in the US Coast Guard. We move around for his job. He REALLY likes boats! He has a lighthouse at his new station in Chatham.

Hangin' with Mom on the beach

This is my Mom. She stays at home with us but is also a teacher and curriculum/assessment specialist. She works from home part-time. She likes to exercise and do fun stuff with our family.

Trouble!

This is my brother and sister. Liam is 4. He is a little wild, but lots of fun. I like to watch him get into trouble!
Addy (Addison) is 2. She is my best friend (I know because she tells me all the time!). She is a character and likes to snuggle with me when we watch TV.




My Auntie Erin started a blog for me when I was just a couple of days old because I had to spend some time in the hospital. We kept that blog going for 4 whole years, until my mom had too many kids to chase around! Now, she says we have more time to write all about my life. Here is the archive of my old blog. It will give you a lot of background about the beginning of my life, which was a bit tumultuous. Please ask me any questions! I am happy to answer anything on your mind about CP (cerebral palsy) or what it is like being me!

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My family on a camping trip in Maine