All the pretty wires...

Wednesday was an intense day, I'm just going to put that out there. Apparently EEG's are considered 'Sleep Deprivation' tests. No one told us this the first time so were were fortunate that Chloe decided to cop a nap while she was hooked up for her first EEG. This time the nurse made sure to mention it: "Oh, it'll be fine. Just keep her up late the night before and get her up early, say 5am, the next morning, it shouldn't be hard. Just make sure you keep her awake till her test at 10:30am." Um, lady, we've got a 90 minute car ride with a baby that LOVES to sleep in the car and you expect us to get up BEFORE the sun and expect her to stay awake for over 5 hours?! Clearly you have no children... Now I didn't say this but I was sure thinking it. Add this to the fact we were told to up Chloe's meds (which cause her to be sleepy) and we were dreading Wednesday. After much deliberation we decided that Kevin and I would get up around 5, get ready and wake Chloe up right before we were ready to leave. As much as we tried to keep Chloe awake, no dice, we had one sleepy baby on our hands! We were, however, able to keep her from a solid nap, waking her up every 15-20 minutes. We decided that rather then heading directly to the hospital and wait around for hours and hours, we were going to go to Parliament. Obviously there isn't much to do at 7am in our Nations Capital but it was nice to have a leisurely walk around, taking our time, looking at the scenery. This was Kevin's first time at Parliament. We even located the Parliamentary Cats, though, like most cats at that hour, they were all asleep. Chloe greatly enjoyed riding in our Ergo backpack style and I have to admit it was nice on my back :p

"But I was having such a nice dream..."

Around 9 we decided to head over to CHEO. Within 5 minutes Chloe was back asleep and we were trying EVERYTHING in our powers to get her awake and keep her that way. We ended up with the air condition on full, the back windows open, blasting the Glee version of 'Sexy and I Know' it to keep her awake (for some reason that song energizes her). I felt so bad, I swear Gitmo prisoners get better treatment :S Thankfully we found a parking spot (apparently there were people circling for spots) and headed to the EEG clinic. They  measured and weighed Chloe (2' 5" and 20.5lbs) and into the waiting room we went. After about an hour Tony, our EEG Tech, was bringing us into the EEG treatment room. I swear some people have the magic touch with kids because rather then a student hooking Chloe up to the EEG and Chloe screaming her face off (like last time) it was Tony and Chloe barely made a peep. Both Kevin and I were so impressed. I think maybe Chloe knew that a nap was coming so she didn't want to disrupt whatever was clearing the way for her. THAT and Chloe seemed infatuated with the EEG's many colored wires and blinking lights...

Once they got Chloe and I arranged on the bed and Chloe got a chance to nurse the lights were dimmed and Chloe was able to nurse to sleep. 45 minutes later Tony told us we had to wake Chloe up and he felt so so bad about this. It took almost ten minutes to bring Chloe around, it was so sad and cute at the same time. She was like a little limp noodle. Still, like the wee champ that she is, once she came fully awake it was smiles all around. Dr. Sell came in at this point and told us he had time to talk right then rather then us coming back later in the afternoon (we love this man!). Once again he was really enthusiastic with Chloe's progression. The good news is that Chloe's EEG showed significant improvement (he said 95%) and he was thrilled to hear how she's been standing and chattering and pushing herself up. The not so good news is that Chloe has continued to have her spasms and it's incredibly important to get those to stop. They've varied in severity and her medication has been increased so our prayer is that this will do it. 

Dr Sell did warn us that should her spasms continue and if her next EEG wasn't as good as this one, or showed a reduction in improvement then our next course of action is a medication called Prednisone. We DO NOT want Chloe on this drug, it would be very harsh on her little body. Please, for those of you who pray we ask that you would pray for healing in Chloe's brain, that the spasms would be finished and Chloe's development would continue in a positive manner. 

After we met with Chloe's doctor, we headed over to Ottawa General to visit a friend who's on bedrest with twins (and doing well, praise Jesus), We then decided we were FAMISHED and Kev wanted to hit an East Side Marios. Funny enough the closest one was in Quebec. Chloe, finally getting the chance to do as she please, slept the ENTIRE time. During the car ride, at the restaurant (except to nurse for a few minutes) and pretty much the entire ride home. We were all passed out asleep by 9:30... We get to do this again in about 2 weeks...??

As of writing this Chloe has been without spasms for a day and a half, yay!!

A Fortnight of Firsts

This is an older pic seeing as we were too busy celebrating

So it's been about two weeks since my last posts and Chloe's been a busy little Bee. Chloe had her first Church friends come over and play (Orianna and Kenzi) which was a lot of fun, Chloe pushed herself onto her knees for the first time and we'd have all been very excited about that had it not been for the fact that Chloe stood up in her crib all by her self the day before!! We're thrilled about this because even though Chloe is now on the full dose of her medication (Sabril) she's still having clusters of spasms. They're not daily as they were before or as intense and we went almost ten days without any but now it seems as if her little body is adjusting to the dosage. Thankfully Chloe has her EEG in 2 days and we get to meet with her Neurologist, Dr. Sell, a little later on that day. We're praying that the Doctors will see an improvement in Chloe's brain activity but with Chloe continuing to be vocal (VERY vocal :p), playful and as she continues to hit developmental milestones we're not nearly as freaked as we would have been weeks ago.

Kev's still annoyed he hasn't been yet

On May 6th Chloe and I went to meet up with friends, Tara and Ferrell, at Parliament to support Tara in her quest to have a Royal Commission called into the Robocall Scandal. I wasn't too sure what to expect, considering how all the protests I've been hearing about have all pretty much ended up in a riot. However once I got to Parliament Hill, I could see there wouldn't be any problems. The small band of protesters were peacefully going about their demonstration and not antagonizing the extremely large group of OPP and RCMP. In fact I'm pretty sure there were more police officers then protesters, at least by the time we got there. Then off to Ikea to pick up some items that ended up in a reunion with an old friend and one crazy game of car Tetris. A highlight was the very sweet compliments Chloe got on her outfit, which was a gift from Tante Becky.

And last but not least: Chloe and I celebrated our very first Mothers Day! It was a fantastic day, incredibly relaxing. Kevin and Chloe got me a popcorn maker to replace the one I sadly killed a few years go. I can't wait to use it.

Image © Taken by a great photographer friend, Jon

Steady on...

You know the saying  "You don't know what you've got till it's gone"? Well sometimes you don't know what you've missed till you get it back. It's been 5 days since we started Chloe on Sabril (1 tsp, twice a day) and with the exception of a minute episode Sunday morning Chloe has been spasm free for 4.5 days YAY! Not only that but Chloe is almost back to her old self, babbling, screeching and blowing kisses like crazy. We're so happy to have our little girl back. Waking up to her babbling in the mornings or when she wakes up playfully is such a blessing.

Tomorrow we up her medication to 1 1/2 tps and continue for 5 days then up it again to 2 tsp. It'll be interesting to see how the amount change will affect her. Not since she was a newborn have I seen her sleep as much as she has the past 5 days, even falling asleep in her play pen (which she barely plays in) though yesterday and today she's napped more normally. She's also able to spend more time in her Jolly Jumper, which I think she's missed.

Sabril is basically to allowing her brain a bit of a break from the spasms (which can cause all kinds of havoc if left untreated) and allowing her brain the time/a chance to rewire itself around whatever is misfiring, bringing it to where it should be. Her next EEG is scheduled for May 16th at 10:30am (which was her original EEG date) at CHEO then we'll meet with her Neurologist, Dr. Sell, later that afternoon. Lord willing the tests will show improvement or better yet no more spasms. Sometime within the next 3 months Chloe will have to undergo a MRI just to make sure there's no underlying conditions. This one makes me a bit nervous only because she'll be sedated for this but the neurology staff at CHEO are absolutely amazing so I'm sure it's just Mommy-nerves.

The begining of the begining

Hi all,

It was suggested that I start this blog as an outlet to what's been going on with my family, specifically the situation surrounding my 10 month-old daughter, Chloe. Feel free to ask questions but respect the fact that we desire to keep the situation off of Facebook. 

Thank you, C

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Chloe, hooked up the the EEG machine

This was originally posted elsewhere on  04.27.12

Ok, so here's how it all started... Kinda long, sorry...

During the last week of March, while packing our house to move my husband, Kevin, noticed our 9 month old daughter, Chloe, doing this strange kind of bow while sitting in her Exersaucer. Thinking she was just playing around and being a baby I grabbed my phone and started recording the new cute thing she was doing. We notched her doing it a few more times over the span of 3 weeks (while in her Exersaucer or while in her Jolly Jumper) and just shrugged it off. I kept recording it whenever I caught it. You can even hear me on one of the videos rationalizing that if it were a problem she'd be crying...

Skip ahead to about two weeks ago when Kev and I were at the Ottawa Ikea after visiting a friend in the Ottawa General Hospital. Chloe had started doing the movements after having woken up from a nap and I (again) shrugged it off as I placed her into the shopping cart. Suddenly Chloe had a movement so forceful she bashed her face into the shopping cart handle, I mean HARD! I picked her up, waiting for the bloodcurdling cries to start and nothing. I looked at her and again she had a forceful movement and bashed her face into mine and it HURT! Nothing, not a peep from her. She had a few more not-so-strong movements then was back to regular Chloe. I looked at my husband and we were both a bit shocked. Chloe is by no means a whiner but she is a baby and babies cry, except then. The first thought that came to mind was "Seizure!". I decided to post one of the videos of Chloe doing the movements on Facebook to see if anyone could maybe help me out. Most people passed it off (as we had) to simple baby stuff but a good friend, MB, text messaged me and asked if I had though it could be seizures. She also said "not to alarm you, but it could be something called Infantile Spasms" and if they were that that I should take Chloe to a hospital (we had just moved and didn't have a pediatrician). I'll be honest, I was ready to go immediately but Kevin, knowing I'm prone to panicking, suggested we wait till the following day and head to a clinic.

The following day I awoke to Kevin telling me we were going to the hospital. At some point the night before JB, MB's husband, had emailed Kevin some information about Infantile Spasms and had also encouraged us to take Chloe in and armed with that info Kevin hit the Google hard and came across some pretty scary info: Cataclysmic epilepsy, sever mental retardation, death. I decided that rather then head to the closest Emergency Room (which was about 30 minutes away) I'd call CHEO (The Children's Hospital of Eastern Ontario) which was about 90 minutes away (conveniently attached to the hospital we had been at the day before!). I explained the situation (movements, no pedi, JB and MB's IS concerns) and was told by a really nice nurse to come on in, they wouldn't turn us away.

4 hours, 2 doctors and a few showings of the videos I took later we had an appointment for Chloe to have an EEG (booked for May 16th) We were thrilled with the speed of the appointment because a) it wasn't the next day so it wasn't so urgent that we freaked and b) it wasn't so far away as it make it seem like it was nothing. I was to keep an eye on the movements and track them.

This past Monday we got a call asking if we can bring Chloe in on this past Wednesday (eep). So we go in for the appointment (at 1pm) where Jennifer, a nice tech hooked Chloe up (Chloe did NOT enjoy this at all). In all the test took about about and a half, just because Chloe was fighting sleep. Now Chloe hadn't had any movements for two days so we were were a bit revealed when Chloe had one right in the middle of the EEG. After the nubbins were removed we were told to expect a call to see the neurologist within 3 weeks unless it was urgent. After thanking them we headed over the main hospital to get a bite to eat. Within 20 minutes we were called and asked if we could come in the following day to speak to the Neurologist, Dr. Sell. I'll be honest, I had a small panic attack, though thankfully it had passed because 5 minutes later they called me back asking if we could come in right then since we were next door and that the Dr wanted to talk to us that day.

So, long story... well, long... Chloe was been diagnosed with an extremely mild form of Infantile Spasms. He was telling us that her baseline for the EEG was almost perfect and Because her development doesn't seem to be stunted, nor has she regressed and her attention is great Dr Sell says he is very optimistic that with the right meds and proper attention in 6 months this could all be a nasty memory which is great because today Chloe had her biggest cluster of spasms, topping at 57... So tomorrow we start Chloe on Sabril... We'll see how it goes...