How is it already the middle of June! So much has happened since our last family update.
We sold our house and have moved into the city which so far has been awesome! Loved our house but no regrets so far, Clay loves the new area and so do Brett and I. It’s a huge change being able to walk to amenities like restaurants, a grocery store etc. This used to be a minimum 30 minute drive for us, one way. We have bought a new house in a beach community that we’re really excited about but it’s still being built so we probably won’t be able to move in until closer to Christmas….hopefully after, so we’re not packing and moving over Christmas. We’re renting in the meantime but do already have an access card for the beach in our new community which is wonderful for the summer and the boys love it. We took a two hour paddle boat ride today and got way too much sun. Clay is a little beach bum already and has pretty much woken up asking for the water and sand every morning for the last couple weeks.
Foster has been doing really well lately, he had a recent EEG which showed improvement from his previous EEG in January (where he was having continuous sub-clinical seizure activity about every 5-10 seconds.) He’s smiling a lot now and has generally been a happy baby lately (20 month old!? how did that happen so fast!) He’s also focusing on faces with his eyes and looking around the room. We have really great seizure control right now, most days we don’t see a tonic-clonic seizure (these are the ones he was having up to 200+ a day of in December.) He’s only having tonic-clonics about one day every week and a half to two weeks. It’s unpredictable when they come though and when he does have a tonic clonic, he always requires rescue meds, sometimes multiple doses of rescue meds to get him to stop. He’s also been seen by the Endocrine doctor he was referred to regarding his multiple breaks. Following his assessment by the doctor and some lab work, he’ll soon be starting treatment for Osteogenesis Imperfecta (Brittle Bone Disease.) This is totally unrelated to his neurological illness and both are actually quite rare so the poor little guy has certainly had a rough go. The new treatment that he’ll be starting will happen in Medical Day Treatment at the Children’s Hospital which is where he goes already every month for his IVIG treatment. The IVIG treatment takes about 5 hours and the new treatment for his bones will happen every other month, three days in a row, 4-5 hour infusions each day. They’ll send him home at the end of each day with his IV still in so that he doesn’t have to get a new needle each day which is nice.
On a more exciting note, I’m actually so excited about this, we get to bring Foster to Ontario for 10 days this summer!!! We’ve never been able to take him anywhere and normally every time we go to Ontario, Foster stays back at the Children’s Hospital while we’re gone. Which always makes the trip a little sad. We have to get letters from his doctors, but we already have his neurologists approval. There’s some things to check off a list before he can come but he’s coming and that’s huge!
We had our 2015 family photos done a couple weeks ago and I love them! I’m always so surprised how well they turn out and how easy it looks. In reality Clay was running away from pretty much every picture and wanted very little to do with it haha.
Here’s my favourites: