February 23rd 2015.

My last family post here was about Halloween and Foster’s November 2nd, first birthday party…so it’s been a while. I’m trying to think (without going back to read the last post) about what all has happened since then, I think it’s a lot haha. By the way I’m always surprised how many people actually read these posts in their entirety.

Well for starters there was Christmas, which I seem to have skipped over but it was wonderful and amazing and there would be too much to say so maybe we’ll just skip it given that it’s almost march now. But I’ll just say this was absolutely my favourite Christmas so far because Clay was so into it this year! He’s still actually singing Christmas carols and slowly realizing that it’s gone until next year, occasionally pointing out that the Christmas tree and jingle bells went bye bye. What a cutie pie.

Our house is officially for sale! Which is exciting and bittersweet at the same time. But I feel like that’s how it’s supposed to be, this was our first home and it’s where we came home to after our wedding and where both of our boys came home to after their births, so I feel like it’s supposed to be a special place that’s always remembered with love and we’ve certainly loved our time here. I think we’re both excited about the prospect of living in the city as well though and the new community that we’re looking at buying in. So the house is listed (as of only a couple days ago) but of course its not really buying/showing season yet so we’ll see how much action happens, we’ve had one showing so far. We haven’t bought anything new, I think our plan is to wait until this place sells first and that way if the right deal doesn’t come along we can always wait another year or two and try again.

Here’s a collage of house photos from our listing if anyone wants to buy a nice 4 bed, 3 bath,  rural abode 😉 let your friends know, thanks!

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Otherwise 2015 has been pretty eventful so far, we’ve spent a night in ER every other week so far, Foster broke both of his legs during a seizure and is currently all casted up and Clay has had a never ending cold (going on about 4 weeks now.)

For a Foster health update: In December, we were seeing up to 200 seizures a day, sometimes the seizures were spread apart enough that he could recover in between and other times they would start to cluster and the cluster would get closer and closer together until he wasn’t able to recover in between. We’d give him rescue medications at home or go into the ER if the rescue meds weren’t working. The week of Christmas, he spent one night in the trauma unit trying to get the seizures to stop because he’d been seizing every 3-5 minutes for many hours and then continued to seize over 50 times in the hour following rescue meds at home. But honestly, that was all predictable and what we were quite used to. We actually changed up his rescue meds in December and were trained to give IM injections of Fosphenytoin at home following two doses of his previous rescue medication so that we can hopefully avoid some ER trips.

On about January 2nd or 3rd, I’d realized that we hadn’t seen a seizure in probably the last 24 hours, nothing the next day, nothing the next day and Foster was actually really alert and he even tasted his first food (he can’t really eat it, he’s not allowed to swallow but we’re allowed to do “taste therapy”.) So after three days of not seeing a seizure I contacted the neurologist and they decided to do an EEG to see what was actually going on neurologically. So we went in for two EEG’s actually, he did about a half hour one in the middle of the week and then followed that with a 24 hour one a couple days later. And apparently on both EEG’s the neurologist said that his EEG was actually worse then it had ever been before and that he was having sub-clinical epileptic activity (which is essentially your brain seizing even though you can’t physically see any sign of it) about every 10 seconds continuously. So for a healthy child, this would be really bad and every effort would be made to stop it. But in Fosters case, we have to weigh the good and bad. On one hand, cognitively, continuous seizure activity is horrible but on the other hand, we weren’t seeing his typical seizures that are in his case very life threatening, have caused respiratory and cardiac arrest on multiple occasions and have caused him to break bones. Also the staff neurologist doing the EEG said that the likelihood of them being able to stop the sub-clinical activity (short of complete sedation, medically induced coma, no quality of life) was very unlikely and since his vitals are stable through this activity, we didn’t see a point in having him sedated.

But then he started seizing, he actually had 9 seizures about two minutes apart so I’m not sure which one he broke his legs with but he ended up with two broken femurs. The doctor explained that because he’s not mobile and doesn’t bear any weight on his bones, the bones actually become very thin and fragile like an elderly person and can break very easily.

I think most of you have seen your share of seizures from Foster, so the problem is when he pulls his legs in-front of his body and presses his heels against each other with all his might, in sort of a frog leg position, Then eventually his legs will snap one over the other. Thankfully, he hasn’t had another seizure (I mean aside from the continuous stuff that we can’t see happening) since so hopefully he can heal up well. But I guess this could be an ongoing issue with seizures and he’s been started on a couple different supplements to help strengthen his bones for the future. This kid can’t get a break!

In the meantime, he’s had lots of friends leaving him messages on his casts. I was thinking I’d keep his casts actually, but they come right up to his hips and he’s since had a couple of bad “blow outs” from his diaper so I’m pretty sure the casts will be in the garbage as soon as their off now haha.

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His swelling has started to go down now and there’s even a little bit of room in his cast, not sure if that’s a bad thing but he’ll be going back this week for another x-ray anyway. The orthopedic doctor said that babies bones heal very fast so he shouldn’t need the casts for too long, she thought maybe only three weeks. She said his right femur wasn’t as bad but the left femur had to be realigned for casting so he may have that cast longer. By the way, Clay was jealous of Foster’s artwork so we drew all over his legs with markers too….and it still hasn’t washed off..oops!

In other Foster/health updates, Brett and I both had our genetics results come back and neither of us are carriers of the genetic mutation that Foster has which is the known link to his disease. So no answers there in terms of why this happened but we do know it’s not an inherited gene mutation.

So speaking of friends signing Foster’s cast, he even got a special visit from my friend Brettney all the way from Ontario! I’m sure she had a super exciting time here haha I haven’t done too much lately with one child sick with a cold and the other with two broken legs and a whole bunch of medical equipment, our days can lack some excitement. But we did get out to ski on Friday so that was a fun day at least!

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lol Brett and Brettney made fun of me for putting the snow filter on that picture for Instagram because we were inside an enclosed gondola haha I felt like it added magic 🙂

 

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I think that’s about it for updates (thank goodness because it’s 2:00am and I need to sleep…although I’m on Foster duty tonight so it might be sparse) but I do have a fun weekend getaway to New York City booked with two of my girlfriends Becky and Kara in a couple weeks which I’m so super excited for!

 

 

xoxo

 

P.S. Believe it or not I actually went through and deleted about half of this post and it’s still way to long!

 

 

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One thought on “February 23rd 2015.

  1. Thank you for the up date,why are you selling the house,I am sorry to see Foster has broke both his legs,he is a strong little boy,and has a lot of love from us all, Iknow we are far away,love to you all Lillian and Paul

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