Don't Mess With Texas: Day 2

Our second day in Texas was an adventure that started with the taxi cab not picking us up in the morning. We had to be there at 5:30 and the shuttle from the hotel didn't run until later. Mom and I had to lug all of our luggage and my car seat to the light rail station. Luckily it was pretty close, and we were only a little late.

I didn't get to eat or drink anything before going so I was getting really hungry by 7:00! Luckily, my procedure started at 7:30. I went to sleep with some medicine and then they did an MRI of my head and a bone marrow harvest in my right hip. I was not a happy camper when I woke up, but it didn't take long for me to smile again.

Riding on a rolling bed, so exciting!

Out of MRI, not so happy :-(

We had to wait around until late afternoon for the stem cells to come back. The bone marrow was send to a special lab where it was separated and cleaned. The stem cells came back and then they put them in my IV. It took about 30 seconds!

Dr. Cox putting in 120,000,00 stem cells!

After that I had to be monitored for about 10 hours for any signs of infection. Mom and I played with toys, watched TV and read books. We tried to sleep at night, but I was having trouble. Then someone came in at 3am to do an x-ray! In the morning we played at the hospital until I was discharged around 4pm. We headed to the airport and flew home. We didn't get to our house until 3am. I slept a little, but mom was so tired!

Nurse Steve hung out with us ALL day to monitor my vitals

Child Life Playroom is so cool!

Now we just need to wait. If there are any changes they will be slow and gradual. We go back in 6 months for another evaluation. If I received the placebo, then in one year I will get to receive the treatment. Stay tuned!

Thanks to everyone for all of your love and support. We could not have gotten hear without you! We love all getting all of your comments and words of encouragement.

Love,
Kai XO

Don't Mess With Texas...

We finished our first day at the University of Texas Medical Center. I had a lot of baseline testing to see what I am able to do now so they can compare it to any changes later. The two nurses we are working with are pretty cool, Steven and Fernando. Steven is from Iowa so he and mom had lots to talk about- although he did go to the "other" Iowa school, he's still pretty cool. We learned all about his dog which is a Basenji- it is an African dog and it doesn't bark, just yodels and meows like a cat (Mom and I spent some time on Animal Planet after hearing this!). Fernando is from Costa Rica and  has lived all over the world. We met a neurologist and a psychologist who did all of the testing, as well as Dr. Cox, the principle investigator. He explained the theory of my procedure in more detail after mom asked about stem cell treatments that actually open the skull to put stem cells directly in the brain, or in through a spinal cord injection. Don't worry, I'm not doing that!

Doing some tests of my motor skills

More tests

In my procedure they will harvest my bone marrow and then get the stem cells out somehow (question for tomorrow). Then they will put them back into me via a transfusion. The cells first go to my lungs and then to my spleen. The theory is that this will work on my immune system to decrease the inflammation in my body that is there due to the ischemic (essentially oxygen deprivation) event during my birth.  There is evidence to show that reducing this inflammation even years after an event can make a difference. After the inflammation is reduced nerves that were once inhibited may be able to work properly. This could lead to secondary changes in my brain, which is why they do pre and post MRIs.

As luck would have it, the medical center is right next to the Houston Zoo! My mom can not pass up a good opportunity for an adventure, so after all of my assessments we went to visit the animals. We have been to A LOT of zoos, and must be some type of connoisseurs of them at this point. We rated this one as very good. We got to ride the light rail back to the hotel too.

Elephants!

Orangutans!

Model of a native hut

 An interesting thing happened this afternoon at lunch too. We were sitting out side of this,little cafe eating our lunch and watching Animal Planet videos when an elderly man came up to us. He said to Mom (in a southern accent)," Is this your boy?" Mom said, "yes it is." Then he went on to say, "I see that you take good care of him, letting him eat first and you waiting to eat?" (which isn't entirely accurate, but ok). "There are going to be angels up in heaven taking care of you and your son can run, and jump and play." He could barely get out the last few words because he had started crying. My mom never knows what to say when things like this happen (mostly because she is trying to hold back tears herself) so she just ends up saying thank you. Things like this happen to us more often than you might think, and while we understand and appreciate the sentiment we also want them to know that we are very happy. Mom really wanted to say, "Thanks so much for your thoughtfulness, but know that we are very happy and while some days are hard we try to appreciate what we can do and try not to dwell on what's hard. Kai wakes up with a smile on his face every day, how many parents get to say that?" In fact, mom hijacked my blog in 2012 and wrote an entire post about exactly this. Our theory is that older people especially think about what used to happen to kids like me, and maybe they feel bad about the rampant institutionalization? Ultimately, I don't want to make people cry, I am the Ambassador of Happiness and want to make people smile!

Ready to have lunch!

Tomorrow we will be on to the next step in our great adventure. Starting at 5:30 am. Better get some sleep!

Get My Boots and Spurs, Ma!

On May 12th Mom and I head for Texas! I think I need a 10-gallon hat to get into the state! We will be there for four days having evaluations, tests and stem cell treatment. I will be one of 30 children in the country who get to take part in a clinical trial for people with cerebral palsy. This trial is looking at the efficacy of using stem cells from bone marrow (15 children) or cord blood (15 children) as a treatment for kids with CP. You can read more about the process in my Mom's post from last month.

It has been an exciting spring for me. Not only do I get to go to Texas (just mom and me!), I also had a fabulous trip over spring break. Here are a few highlights:

Baltimore, MD- First we visited my Aunties and Cousin for Easter weekend. We went to the aquarium, DC, and had an Easter egg hunt.

Bubbles at the Aquarium

Watching the dolphins at the Baltimore Aquarium

Coloring eggs at Cousin Beck's house

Me flying a plane at the Air and Space Museum

Voyager

Rockets

Pres. Obama's House (notice I'm really excited)

Honest Abe Memorial (I'm still not so happy)

Washington Monument in the distance (I'm barely hanging in)

Norristown, PA- Next we headed to The Family Hope Center near Philadelphia. They develop my home therapy program. Mom and I spent two days at the center working while Addy, Liam and Dad went to the local zoo and Valley Forge. They played at the center with me and the other kids who were working too. We always meet people from all over the world! This trip we met kids from Norway, Italy, and the UK! We are so busy when we are here that we only took one picture!

Me working with a new machine at the Family Hope Center

NYC, NY- Our last stop was to Manhattan! We love visiting the Upper West Side to see my Marcy. She gives me movement lessons, and then we get to go have fun in the city. This time we went to the American Museum of Natural History, the Statue of Liberty, and 9/11 Memorial. We even got to ride the subway (which is a little crazy since we have to take unusual routes to find stops with elevators).

Hanging out in Riverside Park

Subway!

On the ferry to the Statue of Liberty

Lady Liberty

I am looking forward to my trip to Houston and want to thank everyone who has helped me to get there. We are about half-way to our goal and would greatly appreciate you passing along my story to others who may be able to help.
 

Mom Hijack #2: A New Frontier

With some excitement, and trepidation, I want to share with all of our beloved friends and family that Kai is on his way to a New Frontier. Next month we will be traveling to Houston, TX so Kai can be part of a clinical trial. He will be one of 30 children in the country who get to take part in a study for children with cerebral palsy, looking at the efficacy of using stem cells from bone marrow (15 children) or cord blood (15 children) as a treatment.

This is a big step for all of us. Deciding to give your child over to science is not an easy decision to make, even if the risk is low. We always said that we would only pursue things that would not cause harm to Kai. While this has a very low risk, we are still dealing with medical procedures, so inevitably something could go wrong. Ultimately, our decision has been thoroughly thought-out, researched, examined, stewed over, cried over and come to rest.

Logistics
We will travel to Houston four times over the next two years. On our first trip they will do an evaluation of Kai's current skills to get a baseline, then they will do an MRI, bone marrow harvest and infusion (we did not bank Kai's cord blood, only Liam and Addy's, so he is not eligible for the cord blood arm of the study). Five of the children in his "arm" of the study will get a placebo. Of course, we will not know if he receives the placebo or not. This trip should be about 3 days.

Our second trip will be six months later. On this trip he will have more evaluations and another MRI. The third trip will be six months after that, so about a year from our initial visit. They will do more evaluations and at this time we will know if he received the placebo. If he did receive the placebo, he would be eligible to receive the treatment at that time. Then we will return in a year's time for the final evaluation.

Opportunity
The researcher, Dr. Cox, has done similar work with children who have had traumatic brain injury. He is currently conducting a second study on this topic. A doctor at Duke has been looking at cord blood treatment in CP kids for a number of years already. We know people who travel to other countries, and pay LOTS of money, to get the bone marrow treatment, just like this one. So, this is pretty cutting edge stuff. Apparently, they have at least 150 kids on a waiting list to be part of this study if we chose not to be.

Of course, no outcome can be predicted or promised. But we do know that children who have done this type of treatment are having results, along with the children in the studies at Duke. While everything up to this point has focused on therapy to overcome what Kai can't do, this would actually be trying to work from the inside- out- and focusing on his brain. Genius! Some of the possible outcomes we have heard include: cognitive improvements, increased motor control, increased oral motor skills and speech. We know that nothing is a "silver bullet".

Support

Some areas of study (i.e. Autism) receive regular NIH funding for research and clinical trials, cerebral palsy is not one of them. Research for CP treatments are usually funded privately. Because of this, and other factors, there are not many studies looking at treatments for kids with CP. Typically, participants of a clinical trial do not have to pay to participate, however, due to the lack of funding we will have to share some of the cost. Dr. Cox had to make the decision to not move forward with the study, or pass the cost on to participants. Knowing parents in the CP community, he chose to move forward, realizing this is an important area that needs further research. If you want to read more about the lack of funding for the CP community click here.

We are doing a fundraiser to help Kai get there! Our goal is to raise approximately $10,000, which will cover the cost of hospital fees and our four trips to Houston. Any additional funds we raise will be donated to Let's Cure CP!, one of the organizations that pushed to make this research a reality.

Asking friends and family to help us financially is not something we enjoy, but our dedication to Kai's progress trumps our pride, so if you are able to help please click below.

The Decision
Obviously, this decision has been difficult. For those of you who know us best, know that we have taken Kai to numerous alternative therapies and tried everything we felt could help Kai, and have had varying degrees of success. Don't get me wrong, I don't feel like we have wasted any time or money. Little achievements are just as good as big ones, and it is all part of our journey. Without investing in one thing, we would not have gotten to the next. Through it all we have met amazing people, and learned that our bright, smiley guy is an extremely hard worker and delights in whatever he is doing (most of the time).

Part of the decision was us rationalizing to ourselves what we wanted for Kai, and our motivations for trying new things. The other part was dissecting the multitude of questions swimming in our heads: Are we trying to "fix" him? Are we on an endless quest to "cure" his afflictions? Would he want to do this if he could make the choice?

Our conclusion was that we are not trying to fix him, only to make life easier for him. In the beginning, before we knew much, we were trying to overcome his obstacles and get him over the developmental "hump", but it didn't take long before our perspective was altered.  What were initially frantic attempts to change his fate, became an acceptance of Kai and what he brought to the world. We are no longer frantic, but we still keep plugging along trying to find ways to make his world more manageable.

If Kai never developed one milestone past where he is now, we would be fine with that. He is a lovely, happy child who touches so many hearts. But for him, living in a body that WILL NOT cooperate is difficult. Imagine that every time you tried to use your hand to pick up a simple object your arms were yanked back so you couldn't get to it, or you reached the object only to knock it away. It is unrelenting. Despite this, Kai is one happy dude (I cannot tell you how lucky we are!).

Currently, Kai cannot take care of himself in any capacity. He can make choices and communicate to a certain extent, but he cannot tell me if someone hurt him or advocate for himself. He cannot use his hands well enough to use a device to communicate. With time, these things will improve, but to what extent we do not know.  We need to make every effort to give him any type of independence, even if it is to be able to isolate movement in one finger to be able to tap a keyboard.

In the end, while we really don't know what outcomes may be seen, the possibilities of this opportunity for Kai, and others with CP, are very promising. To be a part of that is an honor.

Please Play with Me

Being the big brother of a wild five-year old brother and an adorable three-year old sister can be hard sometimes. It's difficult not to notice them, and they constantly seek attention from anyone willing. I do admit that I have fun watching them play and listening to them run around the house, but sometimes I am SO over it! I want to play and be noticed too. I think, perhaps, that people might not know how to play with me. It's difficult to know what to do with someone who cannot walk or talk, but I want you to know that I really love to be around people. So, I'd like to talk about things I like to do and how people can play with me.

1. Greet me. If you could see my face when someone walks into my house, you would see that I get very still, listen intently as they greet my brother and sister, and then wait patiently for them to come to me. Sometimes people forget to say hello. I love it when people do greet me and it makes me feel good.

My smile says it all!

2. Music. I love music of all kinds, ever since I was a baby. I love to hear people sing to me as much as I love listening to songs on the radio. I really like new pop music the most and have been known to get pretty crazy on the dance floor. Pull up a song on your phone, I will give you my opinion!

Here I am playing my new drums!

3.  Read to me. I really enjoy books. My friends at school read to me every day, and so do my mom and dad. I like all kinds of books, and especially like to snuggle on the couch and read. You can even give me a choice of books and I will tell you which one I prefer, or just choose one yourself.

We love books!

4. Ask me about school. If you want to see me get excited, just ask how I like school. I may not be able to answer your questions in words, but you will see how excited I am.

5. Tell me about your life. I love hearing stories about anything! Tell me where you have been and where you are going. Show me pictures and videos on your phone and tell me about the people.

6. Take me for a walk. I enjoy going for rides in my chair, and even like a little speed and spinning! Tell me about the things we see and stop to help me investigate something interesting.

7.  Play games. Even if I can't hold the cards myself, or move the game pieces, I still like to get involved in the action; all I need is someone to be my hands.It may take longer, but I would be so thankful!

Most of the time I sit, patiently waiting, listening to all of the activity going on around me.  I love to be around people and I want them to love being around me. Sometimes it just takes a little creativity to know how to play with me!

Thankfulness

November has been a month for Thanksgiving! It started with my 8th birthday party and ended with spending time with my family for Thanksgiving. Here is my November thankful list:

1. I am so thankful for a great birthtday party with family and friends. We were lucky it stopped raining in time, so we could have a fire outside with a puppet show. We roasted marshmallows and played some fun games, like parachute and freeze dance. We ate some delicious pumpkin cupcakes too!

Enjoying a marshmallow with Maeve and Taylor

The Setup!

The Puppets were hilarious!

I love the parachute!

2. I am thankful for a road trip with my Mom! We started by driving to Rhode Island to stay with my Mema over night. We got to stop at the hospital to visit my new cousin Elsie also. She was so tiny and so sweet.

Uncle Andy and my new cousin Elsie

The next day we drove to New York City to visit one of my favorite people. Marcy is an Anat Baniel Method practitioner who I have worked with since I was little. She helps me learn how to move my body more easily.

Ms. Marcy working her magic!

What do I do we do with these?

While in NYC we went to the American Museum of Natural History. It had some amazing exhibits. We saw one on frogs and one on whales. We also saw the North American and African mammal exhibit. That was the best!

Can you see the frog?

More cool frogs!

Giant Whale Bones

REALLY Big Caribou

We also got to go to the Children's Museum of Manhattan. They had a couple of cool exhibits, but not as good as the North American mammals.

Making a heart beat

Amazing 3D art work

After all this fun we were off to Pennsylvania for some hard work. We were going back to the Family Hope Center for another visit. They are the organization that puts together my home therapy program. We spent two whole days there meeting with lots of people and trying out my new skills. I did have a chance to have a little down time, playing in the beanbag pit.

Chillin in the pit

Rolling down the wedge

It took us nine hours to drive home!

3. I was so thankful to be able to sleep in my own bed!

4. Finally, we got to Thanksgiving. We ran our annual Turkey Trot, and it was SUPER cold this year! Dad had to stay home to work, but Mom, Liam, Addy and I headed to RI for dinner with Mema and our Aunts, Uncles and cousins. It was a great time.

Pre-trot Photo

Making Cranberry Sauce

 All month long we worked on making this turkey.

It says everything we are thankful for. Some things were silly! It was fun to think about all of the things we care about and what makes our life so great.

5. And since I didn't write a Halloween blog, I have to go back and say how thankful I am for my rockin' fireman costume!

Ms. Tricia and I before the Halloween Parade

Lights and Sirens, oh yeah!