Cerebral Palsy, Equipment, Fundraiser, Our Son, Seb Can Do, Seizures, Therapy

Seb Can Do Update

Nepal

I’ve noticed many folks reading the Seb Can Do 2010 post from last year. We did not put together a calendar fundraiser this year for the holidays. We still have about 150 calendars left from last year sitting in a box. If anyone is interested in the calendar for the purpose of using the photos, let me know. I would be happy to post them to you for the cost of postage, otherwise they are sitting in the box.

If you have your calendar from last year and don’t know what to do with the lovely photos, one thing I did as a teacher was make them into Silent Puzzles. I actually got the idea from one of my classroom placements in college. It’s simple: Cut up old calendar pictures into different shapes and put each cut up photo into a plastic Zip Lock bag. I would number the pieces on the back of each picture to keep all the pieces together. Example: 1a, 2a, 1b, 2b, etc. Then I would give two kids a bag with a puzzle in it and they would have to put it together silently. They would have to use other ways to communicate to put their puzzle together. They would start out in pairs and then as the year progressed, work up to groups of three and then four. It was amazing watching these kids use gestures, facial expressions, etc. to put the puzzle together as a TEAM. Thinking back on it now, it has so much meaning for me since Sebastian cannot communicate with words.

We have really appreciated all of the support we have gotten with both of our photo fundraisers. With our photo raffle, we raised enough money to get hyperbaric therapy for a summer as well as paid for a summer of ABM. With the calendar fundraiser we raised enough money to purchase Theratogs (finally placing the order this week for those, just in time for Christmas), and put money towards a gait trainer/other equipment. Some of you may be wondering where we are with that.

We have put the money into savings for Sebastian and use it as we are ready for the equipment. We trialed a few different gait trainers this summer, but did not decide on one to get yet. When Sebastian started having seizures this summer and we began to try different medicines for him, everything got put on hold. I am just starting to not feel totally overwhelmed by the seizures, although I still struggle. Each time the medicine increases, it is a set back for Sebastian. He doesn’t have the strength to get into a gait trainer right now as we try to find a medicine that will help get control of his seizures. So we wait.

We also have some new items donated to us by that amazing family in the Target parking lot: a gait trainer for when Sebastian is much bigger, a bench, a special stroller that we’ve been using for his eating chair at home, and the special tomato chair that we use for bubbles, catch and other reaching activities.

"New" Special Stroller"New" Special Tomato Chair

Now that we are in Canada we will get some financial help for additional items like a wheel chair and possibly a gait trainer. But we are on a long wait list for both of these (6-8 months more for a physical therapy assessment at the hospital which would then allow Sebastian to be put on another wait list for a gait trainer). If we want anything sooner, we pay for it. Currently our therapy costs are so high and minimally covered by insurance, that we have to budget and go without in other areas (a car is not in our immediate future.) We are saving for more intensive therapies (CME for a week in February, plus car rental) and for a bike for Sebastian. The bike costs $2300 (this is the demo version, a brand new one costs $4900). It will last at least 5 years! We have already had a couple of people donate out of the blue for his bike, which was so unexpected and a true blessing.

We have appreciated all of your support, whether it be in supportive words or financially or both. We appreciate your thoughts and your prayers and your questions. We appreciate you being a part of our lives, taking the time to get to know Sebastian for who he is. I just wanted you to know that while the money from the fundraiser is not all physically spent, it’s there for us when Sebastian is ready. We thought he was ready last summer but were thrown a curve ball with the seizures which have changed the pace of life quite a bit. And now, hopefully, the money will go further with the help from the programs available in Canada. The only thing needed, patience and time!

Euro-Peds Last DayEuro-Peds Last DayGetting ready to paint

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