Autumn '14 could have been better, lots of seizures for Harrison- all in the morning for some strange reason, his epilepsy is very fluid. Seizures often change in number, intensity, style, so why not schedule? To this day we still have not figured out what in his life actually brings the seizures on, they are so random, but that gives us some freedom, right?
The first month of school was wonderful. Harrison was alert, energetic, thrilled to be back in school with his teachers and making new friends, and seeing old friends in the hallway! He started having strong seizures by October, and then of course sleeping a lot during the school day, and grinding his teeth like crazy- he sounds like a dolphin talking to the crowd at the aquarium show! Anyway, we had increased one of his meds, and that may have exacerbated the teeth grinding and mouth pain, plus some big teeth breaking through...not very comfortable. Stock Tip: Tylenol.
Still, despite it all, Harrison manages to remain happy, motivated, active, and a joy to be around! Bless that child.
And busy. This kid's dance card is always full...he took swimming classes at the Y, he continued to ride (sadly our barn has closed, we will miss them so much!), he went to his first wedding, he went to the Southwick Zoo with his buddies, he went to the New England Aquarium with his babysitter, and he went to the Mystic Aquarium with his friends Avery and Eliza- which included his first 3D movie and playtime in the aviary with the birds- so fun!!!
We went to the Abilities Expo in September and found some amazing things- we got an Upsee (for some fun walking with a helper) and a GoToSeat which buckles on to a chair, even an airplane seat, so that he can sit with good support and positioning, from fireflyfriends.com, a wonderful company in the UK. We used the seat to celebrate Rosh Hashana and we got to try out the Upsee at the expo. I seem to have trouble posting videos on this blog, but here is a pic of Harry in his green GoTo Seat.
He's had lots of playdates - in fact, he has been invited to birthday parties for several friends from last year who are now in 1st grade...I get such a good feeling when I see those invitations! One was his first bowling party, and his buddies took over so quickly I almost didn't need to be there! But I did, to take pictures of course :)
Harrison has been doing much better eating, and he has tried lots of new foods...he loves chicken with beets or cauliflower, and a special flax bread with butter. We need to schedule a new swallow study before we can add feeding to his school therapy schedule, and hopefully I can find a way to mask the taste of that nasty barium this time.
He also had a scheduled sleep study, which he passed with flying colors. He woke me up at 5:30 in the morning talking and laughing and wrapped up in gauze- he had pulled it all off of his head and looked like Medusa with all of the leads hanging off his head!
Harry is doing amazing in school this year, spending lots of time with his heaven-sent classroom teacher and para- he is such a huge part of the class, always a part of every activity or being the helper to hand out name cards or hold the pointer to the SmartBoard, showing his friends the light board, and sitting on the floor with his classmates pretending to be a butterfly.
Halloween was so great - I must give myself a pat on the back for this one :)
The school has an incentive program called CARE- Cooperation, Attention, Responsibility, and Effort, and the kids earn CARE cards to use to buy things like cool pencils and erasers or a Show and Tell pass from the Care Cart that comes around once a week. And Harrison was the Care Cart, complete with cheap toys which he happily handed out to all of his friends! The big blue button on his cart had recorded messages: Happy Halloween and How Many Care Cards Do You Have? Needless to say, he was a hit!
The best weekend for Harrison was a visit from Mom Mom and Pop Pop- we went into Boston and walked around the Commons with his sister, and we went out to lunch in Coolidge Corner, mom and dad's old digs. Mom Mom planted a big kiss before she had to leave, and Pop Pop got to try his hand at the mealtime experience- very proud!!
And his sister, a freshman at BU, gave him a very cool present...
Harrison went last weekend to his babysitter's in Brookline to decorate her tree, and he was absolutely enthralled with the lights and feeling like a big boy at her house, and next weekend his other babysitter and her new husband are taking him to a Providence production of the Nutcracker.
Like I said, Harrison's dance card is always full, and we are thankful every day, for his existence, his strength, his persistence, his charm, his smile, his laughter, his friends, his teachers, his babysitters, their love, and his love.
Happy Holidays...
