Just looking at the header on this site and realized a need to get some updated pictures. Not only do we have an adorable fourth family member but Clay was such a baby in those pictures and he’s a little boy now. It’s actually crazy how quickly that changed. Like three months ago, Clay was still a baby for sure and then now all of a sudden he’s not, he’s a toddler with a neck (this is a big deal to me because it’s really the defining feature here that makes him look less babyish) and he wants to wear his big winter boots all day long in the house even while climbing on all the furniture. He’s a handful all of a sudden with lots of little meltdowns. I’m sure it’s just his age but at the same time I’m really starting to see his personality and pin point little things about him. For example, he doesn’t want help at all, he wants to do it himself, whatever it is. And if he’s done it successfully before he will remember that and if for some reason he can’t do it again the next time it’s a meltdown and don’t attempt to help him. The issue is that he knows he can do it himself and he’s frustrated that it’s not working. Like the other day, he was wearing his big winter boots in the house (which he puts on himself, so do not offer to do it for him because that’s trouble!) and with these boots, he could reach all of the light switches in the house. He had an awesome time running around the house turning on and off every light switch. This is especially fun when Mom is trying to put on make-up and Clay turns off the bathroom light, then I immediately turn on the bathroom light, followed by Clay (thinking this is a great game) laughing and turning off the bathroom light. This is how I get ready every morning, in flashing lights. Back to my story… So the next day, Clay wants to run around and play with the light switches again, only this time he doesn’t have his boots on and he can’t reach the switches. Well this is a huge problem because he doesn’t understand why he can’t reach the top of the switch. Which leads to a meltdown from frustration, followed by me trying to show him that with his boots on he can reach. Problem number two…I tried to put his boots on for him HUGE Mistake!
Okay so again, back to my story about how his little (or big) personality is starting to shine through. He likes to do things on his own, he’s very determined and doesn’t want help. Point two, he wants to finish what he started. So this morning, Clay is playing with the closet doors while I’m changing Foster. Now, this is problem number 1 here really, I shouldn’t have let him play with these doors to begin with and normally they are baby locked. So he’s playing with the doors and they are the bifold doors so they bend in the middle. He’s opening and closing, opening and closing and then he goes to push them closed again and gets a part of his finger pinched in the fold as he pushes them shut. So he cries and gets a little blood blister, clearly painful. Comes over to me for a hug while crying and then as soon as he’s finished crying, gets back up and goes over to finish the job because the doors still weren’t closed. This time he’s a little more careful with where he places his hands. And he also seems to enjoy music. he sings to himself most of the day during whatever he’s doing….his favourite song is the Alphabet, not that he knows the letters but he makes up gibberish that he sings to the tune of the alphabet…although he has the “L M N O P” part down pretty good because that part is catchy. My friend Heather was watching him the other day and she texted me saying “Clay has a really good musical ear! He can repeat melodies I sing right on key!” Oh and I have a cute video she sent me from that day of Clay and her little boy Reid chasing each other around….I’ll try to add that in here in a sec.
So he’s adorable and my other adorable little man has had a bit of a rough week. Foster’s epilepsy is proving to be difficult to control…well we’ve been told this from the beginning but it isn’t getting any better. He’s onto his 5th cocktail of medications now which is currently a combination of three anticonvulsants that I give him three times a day. Well actually he gets 8:00am, 2:00pm, 5:00pm and 8:00pm right now but that’s changing again soon. His medications and doses change so frequently it’s crazy. Last week he was on a schedule where one of the two meds that he was getting a combination of was changing every three days for 9 days and the other one was changing going up and now it’s going down. I mean this baby can never be left with a sitter or a day care provider, what he needs is a nurse. But this is my job so I’m doing my best to try and stay on top of his daily medication changes. The problem is that with everything that we try we never seem to get control of his seizures and so we’re always making changes and trying something new. We did think we had a good thing going with this last combination which had him down to about 1 or 2 seizures a day, but that didn’t last. Last week he was having days with 4 seizures a day and the even bigger issue was that every seizure was longer which means I have to administer his rescue meds as well. If you’re giving his rescue meds regularly (the initial one is Midazolam) he can become immune to it. And I’m not sure if that might be the case because last week he had three seizures that became status epilepticus which is basically a prolonged seizure that’s difficult to stop and it’s just not good in general, these seizures can go on for hours and cause permanent damage. So he had a 14 minute seizure, a 40 minute seizure and a 27 minute seizure and these seizures were not able to be stopped when I administered his rescue meds (actually one of them did stop with rescue meds, the first one) and the ambulance ended up taking him into hospital multiple times last week. So now we have to switch up his rescue meds too because the problem with these status epilepticus seizures is that the longer they go on for the harder they become to stop. So now, I have to go into the hospital to be trained on administering two injections which I’ll have to give him in an emergency at the 10 minute mark, assuming the Midaz doesn’t stop the seizure when I administer that at the 5 minute mark.
It’s funny because I thought I would work in the wedding industry but apparently God was like “Weddings? No, you’re going to be a nurse, only without a paycheck or a break!” I definitely feel like a nurse these days, only with shaky hands. Like today, I had a dentist appointment at 11:30, so I have both the boys in the back seat all strapped into their car seats when Foster starts having a seizure on the highway. So I need to jump out of the car immediately for two reason. One being that all of his seizures are right around the 5 minute mark if not longer, so I need to be timing it as soon as it starts so that I know when to start drawing the Midaz out of the vial. And two, because Foster vomits through his seizures so I need to really quickly get him out of his car seat and onto his side so that he doesn’t choke. Okay, so it’s a highway, with no shoulder, so I pretty much just stop, put my 4-ways on and hop out. And I’m standing beside my car, with cars zooming by me, in -25 degree weather, trying to draw the Midaz into the syringe but my hands are shaking so much from being freezing cold. God help me when I have to start giving him these injections. At least right now with the Midaz, I use the needle only to draw out the medication but then I change the top to administer it intranasally.
Anyway, we’re going through another change in medications right now because clearly we don’t have great control yet. So the Neurologists said this new one will take about a couple of weeks to build up in his system and we can probably expect the same type of seizure activity until then….assuming we have luck with this new mediation. Fingers crossed.
But while I’m on this subject, my girlfriends particularly Jileen, Lindsay, Hilary, Nada and Heather are amazing. They have been a HUGE support system for me through all of this and are always ready to help with no notice at all. Like in that video of Clay and Reid running around, Clay is in his pajamas, at Heather’s house because I had to follow the ambulance to the Hospital with Foster and needed someone to meet me at the hospital to take Clay. I had nothing for Clay, no clothes, diapers, snacks, lunch, nothing. And who shows up to take Clay for the day? Heather, who’s at home with her son Reid (Clay’s age) and her TWO WEEK OLD daughter! I mean, your hands are definitely full enough without adding my crazy son into the mix. And then Jileen shows up at Foster’s Hospital room after work pretending to be my sister, with a thoughtful care package including make-up, a toothbrush, snacks and her Ipad loaded up with TV shows for me. Stays until after midnight to keep me company and then takes the next day off work and is back at the hospital with me. And speaking of care packages, these girls (all of them) brought us the craziest care package when we had our long extended stay at the hospital. I’m pretty sure they bought the grocery store and every home decorating magazine in it. I think the basket was about 80 lbs. And I know that all of these girls genuinely love Clay, they’ve known him since he was just a couple months old and have watched him turn into the little boy he is now. And I also want to acknowledge that I know how much my girlfriends and family back in Ontario and elsewhere wish that they could be closer and are feeling a little helpless, I just want to reassure everyone that we do have this great support system out here…but of course love your phone calls as well 🙂 And the girls listed above are only a few of many friends offering their support, we are a lucky little family. Especially given that only a few short years ago we arrived here knowing nobody.
Also, we’ve gotten to know our fire department in the last little while with their frequent visits to our house! They’ve even offered to babysit Clayman twice when I’ve been heading off in the ambulance with Foster 🙂 The fire department are always the first to respond when I call 911 because they are just a block away from my house. The ambulance has to come from either Calgary or Cochrane so they’re usually 30 minutes or so.
Auntie Julia has also decided to start volunteering at the fire hall and so Clay got to go visit her recently and see all the big trucks which was pretty cool! She’s back at work in Afghanistan again now though until April. She has this neat app on her phone that the fire fighters use so every time there’s a 911 call it shows up and I think she can even listen in on the radio convos regarding the 911 call. So she can probably see, all the way from Afghanistan, every time I call 911…I’m sure that will be a little unsettling…
Okay, now I’ll just take a minute to brag about my Husband. Seriously though, how nice is this. He took the time to go out and buy pretty craft papers, fold up all these little envelopes and write me little notes about all the reasons that he loves me 🙂 And he put them in a cute mason jar for me. That’s probably the most thoughtful thing I’ve ever received! All that effort after 11 years 🙂
Okay that’s it! Sorry it’s so long, I should do shorter ones more frequently but my life is busy 🙂