Wow! I can’t believe another year has flown by. All in all – it was a fabulous year for us! Our whole family was healthy this year; we had no hospital stays, and Ben seems to have somewhat caught up from the gaps in his learning from missing so much of grade one.
Here are some of our year’s highlights!
The Neck Brace – Ben wore his neck brace, but we realized (in August) that it wasn’t necessarily helping him, so we wore it only for preventative measures. Ben’s surgeon doesn’t want us wearing it, so we have agreed to not wear it til the end of June and determine then if things have gotten worse at that point.
Name Mentor – Ben’s dentist told him in July that he named his new son Benjamin because he thought Ben was such a neat kid. Ben is taking his new mentorship pretty seriously.
Wish Trip – 2018! In July/August we had our trip of a lifetime to Disneyworld and Give Kids the World Village – we are so grateful for that experience. I actually even did up a scrapbook to record our memories! Now I just have to work on the kids baby books ;).
One of a kind hats! Aunt Betty and Uncle Don sewed Benjamin two customized winter hats, so his ears won’t get cold when he is outside…Thank you!!! How awesome is that!!!
I get a contract teaching pre-k full time for a year. This is such an amazing full circle for me because I can take all of Ben’s early intervention experiences and the amazing people who worked with us and use that knowledge to pay it forward by really investing myself into my students and doing everything I can to help these fun, crazy, amazing little kiddos create early success in life). I am overwhelmed by all the interesting things I am learning this year! Teacher hint to parents: let your kids PLAY (physically) every day – so important for social, emotional, and physical development!
Ben has an amazing support team in school again this year! We are so grateful for the kindness and compassion of our teachers, administration, and EA’s. We are so luck to get all the help we get navigating our journey!!!
Loving the fall…video below – this is Ben a year and a half post surgery. After Ben had his spine surgery, I had no idea what to expect. I thought all movement would be tight and rigid. This kiddo doesn’t let anything stop him. I showed this video to Ben’s surgeon. He had a minor heart attack, but couldn’t help but laugh!
In October Ben and I went to Montreal again to see our friends and clinic team. We are told that Ben will require another surgery (which we knew) and we will wait a year or two until he gets bigger for that to happen. The straightness of his back is still awesome, but his neck that is the problem (a pain in the neck really…haha!). We cannot fix the actual problem where it is (around the C1-C2 area because the risks associated with this are not even comprehensible). Instead, we will try another osteotomy (cutting out bone) lower down the spine C6-C7ish (what’s left of it) to help Ben appear more level headed (ha ha…I’m totally going to tell him that one day), but it will never be perfect…who is though? The doctor also insisted that we stop using Ben’s brace because he wants him to just have fun and enjoy life. He says not to use it for preventative measures, and that he will fix any problems that come up. Our orthotist in Edmonton is willing to let us try that out (often when you please one doctor, you are not pleasing another…this is a tricky part to navigating our journey).
Ummmm….here’s some crazy awesomeness that happened in October – Remember when we were at Give Kids the World and I said a lady asked us to fill out a form for Ben to get his own song….well that happened!!! And he LOVES it!!! Oh my GOODNESS!!! We all LOVE IT!!! This was the most special thing in the world. I’ve been trying to update this blog post FOREVER to tell you about it, but I haven’t had a minute…I hope you enjoy this. Carl Alloco…you have some pretty big fans in this house…you too John Beltzer! We played this song for Ben’s classmates and they loved it! I have to admit I find myself humming it every once in a while!
This is a video of us playing it to Ben for the first time! At first it is hard for him to understand the words. I had the joy of sharing this video with the song-writer Carl Alloco and John Beltzer (the founder of Songs of Love) – amazing human beings. Excuse the house – it’s a mess!!! Chaos reigns!
Audiology – Jesse, Ben and I have a surgical consult regarding Ben’s ears. There are two potential surgeries at hand there. The first one is to implant his BAHA’s (bone anchored hearing aids) into his skull. This requires putting two screws into his skull and cutting patches of skin and thinning it out (so hair won’t grow) behind the ear. (I remind Ben that he seems to really thrive with screws in his body, which he heartily agrees with…does that seem screwed up…haha…killing it!!!). This is a day surgery, so it should be simple in nature. This surgery seems like a bit of a no-brainer to me if Ben is using the hearing aids anyways, but we want to confirm a few things on our next hearing test before giving the go-ahead. There are two positives to come from it…Ben will be able to stop wearing his headband and he should get improved hearing because we will be anchored in directly to the screw on his head. The second surgery discussed was a reconstruction of his right ear and a minor reconstruction of his left ear. To do this, they will have to pull out a piece of Ben’s rib and carve an ear out of it (Ben thought they were going to take one of our ears and transplant it from our head to his – which we would totally do if we could – mine of course – Jesse’s are ridiculously large and meaty). It is generally a two part surgery with the first part taking a full day. The second part would take place over a year later and could be optional as the success rates are questionable. Ben is not big enough yet for this surgery as his chest measurement is 52 cm and he will need to be 60 cm or more in order for us to proceed. Jesse and I are not sure about this one. I like the idea or his ears being even as it will help with wearing glasses later in life (which was a huge adventure when he was wearing glasses a few years ago), so we will see how it goes. There are a few other options for this as well, but the rib one seems the best so far.
And I think that is it for us. It was a good year…we’ll see how 2019 shapes up. Ben is happy and healthy. He does get pain from time to time, but it is manageable and he is pretty tough about it (unlike his father who wants to be hospitalized – I wish – for the common cold. Thanks to everyone for their kind words and thoughts this year. We look forward to updating you in the future!