Posted on January 27, 2017
It has been over two months since our last update so let us bring you up to speed…
Bear had his g-tube surgery in the beginning of November, and he recovered like a champ and was sent home after just 48 hours. Also in November, the youth group at Grandma and Papa’’s church, New Life in Sayville, organized a Spaghetti Dinner to raise money for Bear and had a huge turnout, raising over $5,000! Thank you! Other highlights from November included Bear going to see a live showing of The Octonauts, one of his favorite shows. A bit scary, but he sung along loudly with the rest of the kids. Finally, on November 28th Bear received the fourth dose of Nusinersen(Spinraza), his clinical trial drug.
In December Bear had an appointment with his physiatrist, Dr. Semel, to get refitted for his foot, leg, and torso braces, since he has grown by 5 inches over the last few months! Bear also made a few trips into the hospital to meet with Gastrointestinal doctors, regarding difficulties he started having with reflux (due to a weak esophagus) and secretions (due to not being able to swallow his saliva). Both have made it very difficult for Bear to get through a feeding without choking. We recently switched his diet, which has improved things a bit, but it’s a work in progress. December 18th was Bear’s 2nd birthday, and the lucky kid got 3 birthday parties, with family and friends. The theme was Thomas the Train, his best friend, and he of course got way too many toys. In between his birthday and Christmas Bear visited Columbia Hospital for a final fitting for his power chair! It’s set to arrive next week, so stay tuned... Bear might be driving around on his own soon. Christmas to New Year’s was a rough time for Bear and us, due to feeding/stomach issues. We were pretty much housebound for a while, but we still found ways to enjoy the holidays with friends and family. And, finally, at the end of the year the FDA officially approved the experimental drug that Bear has been on, Spinraza, meaning kids around the country will soon have access to it, which is great for the entire SMA community.
Team Bear fundraising - we continue to receive generous donations from far and wide, including many long-time customers at Kevin’s father’s stationery store. All of these generous donations have been put toward medical bills and items purchased to make Bear’s day to day life a bit better. We are starting to plan a few fundraising events for later this year, mainly to raise money to purchase an accessible wheelchair van, so Bear will be able to leave the house.
Things we recently purchased-
- 2nd IV pole
- 2nd Suction Machine
- Cough assist battery
- New braces/ socks for said braces
- GTube feeding supplies, syringes, formulas
- Farrell bags for venting
- Oral hygiene swabs
- Sterile water
- Daily meds
- Adaptable toys
Things we are working on purchasing-
- Power chair accessories
- Accessibility items- Ramp purchase and Vehicle purchase
- Medical bed, mattress and accessories for reflux, skin breakdown, etc
- Toilet system
- AA Diet supplies
We truly hope everyone enjoyed their holiday season and that 2017 is off to a happy and healthy start for all of you. As always, thank you for following Bear’s journey.