2016 Year in Review

It was a busy 2016. We have had some extraordinary adventures, hanging out with Sebastian Vettel and the Ferrari team in the paddock in Montreal was the experience of a lifetime. An RV trip to Yellowstone and Glacier National Parks and a road trip to the Indy 500 brought Sam’s total of states visited to 30, and Sam’s story being told on national TV thanks to the Rare Disease United Foundation’s Beyond the Diagnosis exhibit and CBS (it is here: https://www.youtube.com/watch?v=ahADtrgP0Pk if you have not had a chance to see it! ) was scary but amazing.

We finally got the VWM Families Foundation up and running last year and managed to raise close to $20,000, most of which has been split between Dr. Van der Knaap’s VWM research in Amsterdam and Prof. Elroy-Stein’s in Tel Aviv.

At the end of last year we also finally started the extension onto our house to make it accessible for Sam. Our house is a split level so there is no way to get in or out, or to the bedrooms and bathrooms without stairs. I am 5 feet tall and 100 pounds, so Sam’s sheer size is getting very difficult for me to handle. We are adding a lift from the garage to the main level of the house, making the office on that level a bedroom for Sam and adding an accessible bathroom as there isn’t a bathroom on that floor currently. This is a project that we have known needed to be done for a long time, but honestly have been avoiding. Beside the obvious costs, Nick and I (me especially….) have felt a little superstitious about this lift. I can’t help feeling that it is a bit like a generator, once you buy one you never lose power again. I can’t help thinking that once it is installed we might never really need it. Hopefully I am being paranoid and superstitious, but in any case the building work should be completed by early spring and will make our lives significantly easier.

Sam absolutely loved school and all his friends there last year, but he does seem to be falling behind in first grade more than kindergarten. This is not at all a surprise for us, but Sam is still not able to fully recognize all his letters and is a very long way from being able to read, while the vast majority of his peers can. He has his own curriculum at school so this isn’t a problem so far, our main concern is that he will start to fall behind emotionally and socially, something we have noticed starting to happen and will be keeping a close eye on in 2017. For now though, he looks forward to school every day which is all we care about.

As for Sam’s health. We did see a decline towards the end of last year. Sam is no longer able to climb the stairs with help like he used to be able to, he can barely stand anymore, even with support. He is also finding it very hard to feed himself; we often have to spoon feed him now and he is no longer able to drink out of a regular cup without spilling. Sam also had his first seizure at the end of the year. So far they have been infrequent and not what one typically thinks of as a seizure. They are called absence seizures, Sam essentially zones out for a minute or 2, his eyes are open but he is unresponsive, then he comes to and is very tired. So far the seizures are not causing any problems and are not frequent enough to look into medications, especially as the medications often have worse side effects than the seizures.

As a family, we have cut back even further on after-school activities as any pick-up or drop-off is anything but quick or easy with Sam. Just getting Sam’s shoes and coat on, getting him from the house into his wheelchair and strapping his wheelchair the van is a 15 – 20 minute process. This means we have only one afternoon after school where we have to drive anywhere (and thanks to amazing neighbors we only have to drop off every other week). Amazingly, there have been no complaints from Sam’s brother and sister who seem to enjoy being home and I find that any time we do have to do anything, it stresses all of us out. I suspect we may need get regular help in the afternoons at some point so I can shuttle Sam’s brother and sister around, but for now we are enjoying the light schedule and being together.

We have no idea what 2017 will hold for us, for the first time as long as I remember, we don’t have many concrete plans. We just found out that we will be taking Sam skiing again, this time at Double H Ranch in NY, and would like to try to get to a few more of the 20 states he still needs to see, but we are just going to play it by ear and see how the year goes. No complaints so far though, as 2017 has started off well with a trip to Miami for Beyond the Diagnosis and waking up to Sam saying “I love every day!”


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