The Kronicles of Kai

Sunday, June 21, 2015

Honoring some special people...

This past Wednesday, my school district hosted an award's night for people who go above and beyond to support kids like me! It was called the Silver Dolphin Award. Some of my favorite people were nominated! I wanted to take a moment to honor them:

My teacher Ms. Tricia is THE BEST! She helps me everyday learn how to do new things. She always makes learning fun and lets us do lots of art and music in class. She always listens to me when things aren't going right. I'm so lucky to have had her as my teacher for the past three years! She was one of the "special honorees" at the ceremony!

My friend Andrew is so fun! He reads to me in class a lot- mostly Dr. Seuss books because he knows how much I like them. He will stand with me at assemblies and go out of his way to see if I'm ok. He even came to my birthday party last year! I will miss him next year when we are at different schools. This is a picture of him and Mr. Kliment, who is another one of my teachers. He is the teacher for Andrew's class and always makes me feel special and included in class. Everyday I get to share my news with the class.

This is Alexis, and her mom. She is a high school senior and is going to be a special education teacher someday. She comes over and helps me at home sometimes. She likes to play with me and reads me lots of books!

My other friend Erica was nominated, but she couldn't go to the ceremony. She also reads me lots of books and give me "air hugs" when she sees me at school! She is so fun to be around. Here we are at our field trip the lighthouses.

My mom helped with the ceremony- I didn't get to go, but she said everyone felt very honored!

Sunday, April 26, 2015

Spring Break Fun!

Even though we were really hoping to go somewhere warm for spring break, we still had an awesome time doing fun things on the Cape all week. Here is what we got around to...

Sunday
Of course, I got to ride my beautiful horse Duke at Cranberry Sunset Farm (I'm doing a triathlon with mom and dad to raise money for this amazing place! To donate click here).

Here I am with Little Duke!

Peter helps me learn how to ride.

In the afternoon we went to the Harwich Junior Theater to see "The Secret Garden". It was a musical. We didn't get any pictures with the actors, but we took a picture outside. After, we went to Buckie's for a treat and then to the park.

Monday

We had some old friends come to visit for a couple of days. Corey, Alana and their Mom, Liz, met us at the Cape Cod Children's Museum in Mashpee. We had lots of fun playing with dinosaurs, dressing up and petting turtles!

Tuesday

We went to a fun event at ME Small school where we got to pet a hedgehog, a bunny and a turtle. We did some arts and crafts too. Then we went to the park. I love the swings best!

At the park on School St.

In the afternoon we went to see the juggler at the Dennisport Library. Here is my brother being part of his show!

Wednesday

This was a super fun day! We went to the Marconi Fire Station for Junior Ranger Day. We learned all about fighting forest fires. We got to try out different types of hoses and even a fire extinguisher! Of course, Smokey the Bear was there! Later that day we did an Earth Day scavenger hunt at the National Seashore. We had to travel to different places, do activities and get puzzle pieces. Then when we put it all together we got a special Jr. Ranger patch!

Getting ready to use the fire extinguisher

Ready, aim, NO fire!

Thursday

I got to go to the Audubon camp in Wellfleet all day long with my brother and sister. We were so busy we didn't even get pictures! We got to touch some wild birds, go on nature walks, make crafts, look in the exhibit hall and learn all about animals. It was so fun!

Friday

We went bowling with my friend Maeve. My sister helped me get the balls and roll them down the track to get a strike!

Saturday

What a beautiful busy day we had: ziplining, a trip to see the herring run in Brewster, the playground, and swimming at the YMCA.

I love my zip line!

At the herring run with our friends

Drummer Boy Park

Swimming at the YMCA

It was a fun week, but I can't wait to get back to school!

Tuesday, March 17, 2015

Mom Hijack: Stem Cell Treatment Update

Lots of people have been asking when we find out about Kai's stem cell treatment- whether Kai got the stem cells or the placebo. Well, we finally got the call! After just under a year of waiting, the nurse coordinator, Steven, called to schedule Kai's 1-year follow-up visit. We will be heading back to Texas at the beginning of May for an MRI, xrays, blood tests and physical motor evaluations. I was informed that Kai did in fact receive the stem cells at his first visit last May. So, to all of you who crossed their fingers, said prayers and sent positive energy- Thank You! We got what we wanted.

Interestingly, over the past few months, I have been hoping to hear the opposite- that we didn't get the stem cells. Even though I knew any changes would be slow, gradual and small, I still haven't seen anything that I can pinpoint as such. Of course, I see Kai every day and may miss something that could come through on the testing.We still have another year of monitoring to see if any changes occur as well.

When we saw Dr. Cox six months ago, he told me that they would expect one of three results from the treatment:
1. Noticeable changes in function and in brain structure (MRI).
2. Noticeable changes in brain structure only, but not in function.
3. No change

So, it will be interesting to get the results of these tests to see if there is a difference in Kai's pre and post MRIs and if the other evaluations show any change that we are not seeing. Kai is only the third child to get to this point in the study. It will still be a few years until they have any data/results to share. We will go back to Texas one more time in 2016 for our final evaluation. Hopefully at that time they will have more information to share about how other children progressed in the study, and we may see some changes in Kai that have not manifested yet.

Now that we have made it this far, we need more crossed fingers, prayers and positive vibes. It is important for the CP community to show some change/gain from this type of treatment, even if it may be small. If this study shows enough promise, it will encourage the researchers to expand the study, changing some of the factors and continue working to find ways to help our kids. Without any statistically significant results the investigation will likely end here. There is no federal funding for CP, so finding researchers interested enough to find outside funding sources to investigate treatments for CP is difficult. So say a quick prayer that something changes for enough kids to show viability for this treatment.

We feel very honored to have been part of an important medical advancement such as this and are happy that Kai continues to have a positive attitude and sweet disposition. He truly is the Ambassador of Happiness! We are looking forward to the next year in hopes that there are some gradual changes for him.

Happiest Kid on the Planet

This Month is Cerebral Palsy Awareness Month, and next week on March 25th is CP Awareness Day. If you think of it, wear something green to show your support for the 17,000,000 people afflicted by CP worldwide, approximately 800,000 of which are in the US (Statistics from Reaching for the Stars, 3/17/15).

If you are feeling extra generous (or maybe need a tax write-off;-), consider donating to either of these organizations working to get more research money for CP:
Reaching for the Stars
Let's Cure CP!

PS: Thank you to everyone who made being part of this study a reality for Kai. We could not have done it without the donations and support from family, friends and kind-hearted strangers.

Tuesday, February 24, 2015

Winter is Very Long...

Happy 2015! It's been awhile since my last post- which was about my surgery. Since then I have gained two pounds! That's more then I've gained in the past year! We are getting adjusted to my new way of eating and trying new recipes.

It's been a very long and busy winter here on Cape Cod- and with a ridiculous amount of snow, it looks like we still have a long way to go! We've been trying to embrace New England's cold lifestyle, but sometimes we just want some warm sunshine!

This Christmas (well in 2014), we stayed home and had Christmas morning at our house- the first time EVER with our whole family! I got some pretty cool presents- my favorite of which was this cool sled! (I got to use it a few times so far, to get around the neighborhood after our first big storm because we couldn't push my chair in all that snow).

I also got some cool adaptive switch toys: penguin roller coaster, an airplane and a dancing fox (of course he plays, "What does the fox say?". We had Christmas dinner at Mema's and Grandpa Al's house. It was fun to see cousins and eat lots of good food!

The day after Christmas we had a big surprise party for mom because it was her 40th birthday. She had no idea we were having a party- we really tricked her! I was really good a keeping the secret. It was supposed to be a 70's party because mom was born then (wow, that seems like a LONG time ago), but only a few people dressed up.

A few days after the party we got to go on a ski trip to Mount Sunapee in New Hampshire. It's our favorite place! I got to ski for two days in a row! We had so much fun and it wasn't too cold either. Our hotel had a pool we got to swim in too.

Getting ready to go!

View on top of the mountain

Mt Sunapee Instructors

On New Year's Eve Dad took us too all kinds of shows for First Night while mom was volunteering at the kids art studio workshop. We did some ice skating too over winter vacation.

Ice skating with Liam at Charles Moore Arena

Since the new year we have missed so much school, luckily I had my sled so I could get around in the snow. We got to go back to Mt. Sunapee for a Mom's and kids trip! I got to ski for the whole day- my first time ever!

Helping Mom shovel snow

At the beginning of our February break I got to carry the rings in my Mema's wedding. We weren't able to take pictures in the church, though. I did get to dance a lot at the reception! It was a great time!

Getting ready to tear up the dance floor!

Mema, Al and Me

My cousin, Cameron, pushing me on the dance floor

We went to North Conway for part of our vacation too. More skiing! It was so cold- but I was able to last the whole day! I will post more pictures from that trip soon. I even have a video of me going through the race course!

King Pine Ski Area- it was super cold!

My sister Addy and Brother Liam with me at Attitash Mountain.

Our last adventure over vacation was going to see Frozen on Ice. Anna, Elsa and Olaf were all there and it was so COOL!

Watching Frozen on Ice at TD Garden!

Saturday, November 15, 2014

Mom Hijack: Thoughts Outside the OR

It doesn't matter how stoic, resilient or strong you are when your child goes into the operating room. I would describe myself with those qualities periodically, but when I'm holding my son's hand as the anesthesia puts him to sleep, there is no ability to hold back tears. He even laughs a little as the strawberry-flavored medicine relaxes him. His breathing becomes a bit labored and then he's asleep. The surgical team assures me they will take good care of him, and I trust them because I have no choice. The thought of not trusting them would put me over the edge.

Pre-surgery

I walk out of the OR and compose myself- for a while. I gather our things- suitcase, bag of "stuff to do", and an empty wheelchair. It's not long after I settle into the waiting room that I start talking with another mom with a 2.5 year old daughter who is going in to have her bone marrow donated to her 5 year old sister. The sister has sickle-cell anemia, and has been in and out of the hospital her whole life. We both can't help but cry. She has two kids in the hospital now. I try to distract her daughter, by asking her questions through weepy eyes- but she's not fooled. I'm thankful when they get called in because I don't know what to say any more.

I move to another waiting area to access the wifi. I need some distraction from my own thoughts. Put a message on FB to get the positive energy going, have a granola bar, start writing. I get a few text messages wishing Kai well. Rob is stuck in traffic on his way here.

Kai is having four procedures with a huge team of people taking care of him. That means you sign multiple consent forms that all list the possible risks of each procedure: bleeding, infection, perforation, organ blah blah blah... I stop reading them completely after the third.

First doctor report: 8:42am

Dr. McGill, ENT

He drained lots of fluid from Kai's left ear in preparation for the ABR hearing test, which will be the third procedure.

I guess it's time to go get some tea. The next surgeon will take awhile to finish. On the elevator ride down, the song Blackbird, by the Beatles is playing in my head. Probably because I watched a youtube video of a father singing it to his dying baby (named Lennon) in the NICU, just after his wife died. More tears. Thank you Au Bon Pain for saving me from myself. Bacon and egg croissant please.

Now, back to FB. I have my issues with FB, but I must admit, people's comments and "likes" can lift my spirit. So thanks to all who sent their positive vibes. :)

Rob arrived around 9:30 and the nurse liaisons told us that Ryan Seacrest and Usher were downstairs dedicating the new patient entertainment center and Seacrest Studios. What a nice distraction. Children's Hospital Boston is apparently the 8th hospital studio that the Seacrest Foundation has donated. Usher, the Swon Brothers (The Voice), and Shawn Mendes (new teen pop star) were there to dedicate the studio and be part of the first broadcast. Some very lucky hospital kids got to take part as well, including one boy who has spent a good part of his life at Children's Hospital Boston having open heart surgeries, and is waiting a heart transplant. Big lump. It just doesn't stop around here.

Ryan Seacrest

Usher

We watched the broadcast on a permanent large screen that is in the lobby of the hospital. Kids staying at the hospital will get a chance to take part in broadcasts, watch from their room, and request music from their rooms.

Second Doctor Report: 10:45am

Dr. Jaksic, general surgery

He said everything went very well. The hernia repair was easy and they could see the healed stitch from the other hernia that Kai had repaired as an infant. The g-tube is now placed. This is the most difficult part for me. A button now sticks out of Kai's stomach so we can attach a tube and give him nutrition, since we are unable to provide enough by mouth for him to gain adequate weight. So starts a new chapter...

Facebook is a really nice distraction. And so is Ryan Seacrest- especially when he's not being cheesy. He was actually quite impressive. Seemed down to earth. Does he do drugs? Something I always wonder about when I am star struck. It's disappointing.

Third Doctor Report: 11:30am

Audiologist

She said the test went well. Kai has normal hearing in both ears and the sound is reaching his brain. No way to know how he processes language from this test- would give a lot to have that one answered.

Spending too much time reading about little Lennon and his Dad. Tears and more tears. Why do I do this to myself?

Last Doctor Report: 11:59am

Dr. Rufo, GI

Everything looks good. He took some biopsies for routine procedures- not because there is a concern. He is in recovery. They should come and get us in 10 minutes or so.

The anesthesiologist equated his part like a plane flight, take-off and landing is when there are most likely to be issues. Hopefully landing will go as smoothly as take off.

12:06 ho hum
12:08 i hope they really meant 10 minutes
12:09 wow, they are good! Kai is awake! Time to start breathing again.

Post- op- not a happy boy

24 hours later- a much happier boy!

Thursday, November 13, 2014

9th Birthday Bash!

It was a perfect day for my 9th birthday party! Mom was worried the weather was going to be too cold, but with the help of a little campfire and a lot of running around, we all stayed warm.