Thursday was yet another trip to see Dr Rodan at Boston Children's Hospital. As the appointment was at 830 we left the house early and drove down.
There is not much news at this point. The Dr is fairly certain from the genetic test results that Kenzie is most likely being afflicted by a change in gene VPS13D. There is not much known about this gene, but other genes in the same family do affect movement. A worldwide search has turned up at least 5 other candidates with variations in this gene and with symptoms similar to Kenzie. There are a group of researchers currently working on and reportedly they are close to publishing a paper in the next six months. Not exactly sure what this will mean for Kenzie yet. To determine if Kenzie is definitely being affected by this gene will take some time. Kenzie will need to have functional testing done, and I apologize but we really aren't sure yet what that entails but I believe it involves testing the gene from her blood.
Kenzie will also be seeing a new specialist on her next visit to Boston. It is a Dr from the orthopedics department who specializes in cerebral palsy, which Kenzie does not have but has expertise with extra movements and will help make sure medications and physical hardware such as braces etc are on track. He will be part of a team including Dr Rodan that will be caring for Kenzie.
This past week we were also finally able to meet with a speech therapist for Kenzie here in Scarborough. More of a meet and greet but starting next week Kenzie will have more thorough evaluations and speech therapy will begin. The process has also been started through Child Devleopment Services which falls under the umbrella of the Department of Education here in Maine to get Kenzie evaluated to see if she qualifies for preschool that would assist her with her specific needs. There is a place here in Scarborough called the Morrison Center where Kenzie is getting her speech therapy where we hope all of this will happen. If it all goes well we will move her physical and occupational therapy there as well. These services are designed to get Kenzie ready for school whether traditional or not. Involves making an Individual Education Plan for her to specifically address her. The teacher or counselor ratio varies greatly here depending on need and can even be one to one.
That is the most I can think of for now. We will return to Boston on November 9 for two appointments. With any luck we will spend the night before after or both down there because the travel can be wearing at times especially when getting Kenzie evaluated can be tiring as is!!! Any questions shoot us an email or text....not always easy to explain all at once. ...Thanks !!!
Saturday, July 15, 2017
We just got back from a short get-away to New Hampshire. We headed down for the Eastern League AA All-Star Game and Home Run Derby. Tuesday night was the home run derby. It was actually quite exciting. During one of the rounds, one of the guys hit 18 home runs in 3 minutes!
Here's Kaitlyn with the New Hampshire Fisher Cats mascot, Fungo. Kenzie still hates mascots and screamed her little head off as soon as we got close. Thus, a Kaitlyn only pic!
Wednesday night was the player autograph session followed by the All Star game... east vs west teams.
Danny Mars, one of our guys signing Kaitlyn's poster and ball.
She didn't get all the players in the amount of time we had, but she got a lot!
One of our players, Raphael Devers... he got promoted to AAA in the days following the game. The line for his autograph was insanely long. They even limited him to signing one item per person.
Kevin and Kaitlyn stopped for a selfie while finding dinner for the family.
Right after dinner, Kenzie vomited on me. I think it was a heat thing because she was fine before and after. I managed not to vomit myself and dragged her up to the bathroom where I cleaned us up as best I could in the sink. While everyone was staring at us in the bathroom, one mom with a kid a little younger than Kenzie took pity on me and brought me paper towels as I struggled to keep Kenzie from rolling off the counter and clean her at the same time.
One of the balls was hit right to our section... Kevin did his job and protected Kenzie. The close encounter scared Kenzie, but she was fine. Kaitlyn tried chasing down the ball, but the guy sitting beside her gave it to her anyway.
Kenzie was wiped out by the end of the game... it was 10 PM! This is about the 2 minutes of fireworks that she watched. After that she was done... snuggled into Kevin and ignored them.
The Sea Dogs were supposed to have a 3 game road trip in NH starting Thursday. We had planned to get tickets, but it was supposed to be rainy and yucky all day. Instead we decided to skip the game and spend the day at the hotel. They did end up getting in the game, but we had fun anyway.
My dino girls!
Last time we took Kenzie to the pool, she was NOT a fan. This time, she loved it! She didn't stop giggling at all!
Even I got in on the pool action this time. I've been really self conscious about my weight since I had Kaitlyn. More often than not, I would either read and watch Kevin and the kids play in the pool or I would go to the exercise room. With everything going on with Kenzie, I don't want to miss a single second of fun with the kids. So I sucked it up and went shopping for a new bathing suit. I was rewarded when I discovered this hotel had a hot tub too!
On Friday we went to the Franklin Pierce Homestead. Photos weren't allowed inside, but Kaitlyn got to try using the iron in the house. She talked about it for hours! She has started reading the Little House series and she was so excited when she saw the illustration of a butter churn and the actual thing in the house.
It's hard to tell in the photos, but yes, the girls had matching shirts on!
After our house tour we headed to Mr. Mac. This place has about 50 different types of macaroni and cheese, plus you can mix and match to make your own combinations. I was pretty sure I had died and went to heaven...
Kaitlyn and Kenzie got the All-American original. Kevin got the cheeseburger one... it had beef, a hint of mustard, and pickles. I got a Tex Mex one... salsa, beef, taco seasoning, sour cream, and a layer of crunchy tortillas. Soooooo good.
That afternoon, before we headed home, we went to the McAuliff-Shepard Discovery Center in Concord. It was great! Like a mini Air and Space museum without the huge crowds. There was a bunch of hands on stuff for the kids to try.
Kaitlyn learned how to land the space shuttle.
Trying out the simulator... crashed and burned...
Kenzie tried to help next, but it didn't go any better...
She tried the lunar module next, but that didn't make it in one piece either...
Kaitlyn tried her hand at being a meteorologist.
Daddy showing Kaitlyn how it's done...
Getting in my workout for the day, since I didn't have time for the gym.
Kenzie loves her new stuffie! Sorry Uncle Mike... no Thunderbird ones!
Tuesday, July 4, 2017
Kevin had to work today, so we had a low-key day. We took a walk around the neighborhood. Then took some pictures in our red, white, and blue.
Kenzie and I in our Mommy and Me Lularoe leggings ❤
We hung out with Mammy for a few hours in the afternoon. Kenzie was in a crazy mood when it was time to pick up Daddy. She pulled out her hair bows and kept high pitch, dolphin gigging.
We finished out the day with some BBQ at Famous Dave's. Kenzie demolished a couple of cornbread muffins!