Trick or Treat

Do you know what October 31st was... Other then the end of the month... Other then Halloween, Other then the 129th day since Chloe has had a spasm?? 

It was Chloe's LAST morning of meds. 

Last dose!!

That's right, Chloe-Lee is absolutely, 100% medication free!! We are so incredibly happy about this (Kev might have cried...) The journey that started back in May with Sabril has come to an end. We are so grateful for the positive thoughts and prayers that have been sent our way. It's almost as if we have a completely new baby. In 2 weeks Chloe has just steamrolled over milestones like crawling, pulling herself up consistently in her crib, making more word-sounds. We're so excited to see what comes next. We have had to organize a meeting with a Child Development counselor but I go into this appointment with the confidence that Chloe will begin catching up. It also helps that within the past few weeks we've joined the Toy Bus (where she interacts with kids her age), a Mother Goose program that's been teaching us songs and rhymes that help with development and another group to help connect more with Chloe.

Happy Halloween

 

We are so, so thankful for how far Chloe has come and can't wait to see what comes next!

Oh Happy Day

Hello friends, I have to admit that blogging isn't my strong suit. Once again I apologize for the large gap in blogs. Having said this let's begin...

New friends help make this easier

Paging Dr. Cheeks

Since we last met Chloe has made leaps and bounds in her situation. In August Chloe underwent both an MRI and another EEG. On the the 13th we went to CHEO for Chloe's MRI intake and the 16th had the MRI. The reason for the MRI was to rule out any underlying causes of the Spasms (70% of cases with children with IS is caused by some pretty scary abnormalities - Cerebral Palsy, Down Syndrome, etc). The MRI was a little more invasive then EEG as they had to sedate her to keep her from moving around.  I'll admit that this was harder on me then it was on her, she didn't even cry while they were sedating her (Mama sure did). The doctor and nurses that were preforming the MRI were greatly impressed by the fact Chloe was so calm while being sedated. They had explained that it was  the norm for most children to get very upset and often fight the sedation where as all Chloe wanted was to hold my hand and be sent to sleep with a little kiss on the forehead.

Coming out of sedation

All the nurses and doctors were very encouraging and even took the extra time to rescan Chloe just in case they missed anything. The EEG was just to make sure that the readings from the last EEG hadn't changed and Dr. Sell was able to give us the news that we'd been anxiously awaiting: The meds have done their job and Chloe was Spasm free!!! As of writing this it has been exactly 101 days since her last spasm!!! Included in all this is that Chloe's Feeding Survey showed nothing abnormal with her throat and she was once again ok'd to eat regular food (YAY, no more purees!). On top of all this Chloe has been weened completely off the Prednisone and we've also started weening her off the Sabril. As of the end on October Chloe will once again be completely medication free!! Dr. Sell says we shouldn't need another EEG until at least January and now the next thing we have to look forward to is a developmental check up to see where Chloe is (though it hasn't been booked yet). Dr. Sell says that even though it looks like we're out of the woods we're still going to have EEG's and another MRI just to to make sure things are staying on track, though those haven't been booked yet either :p

We've (Chloe and I) recently started attending a Mommy and Me group and a stroller fit group in hoped of making some new friends and to get healthier. It finally feels as if we can put the past 6 months behind us (knock on wood ;) )

We are so, so grateful to the doctors and staff at CHEO for the outstanding care our family has received as well as the love, prayer and support of our friends, church and family.

An Idea of Impact

Someone was asking me weather Chloe has showing any more signs of side effects from the Prednisolone to which I explained that Chloe is one of may children who has developed 'Moon Face'. Trying to explain about how an already plump face could look any plumper I threw this together:

This isn't even the plumpest picture I had... Apparently she will go back to normal once off the meds... 2 more months to go till we're off the Pred then I think it'll be the Sabril next then we'll see...

A Really Great Day

You know how there are some announcements you rehearse in your head, anxiously waiting to tell people? Well, they're bloody hard to translate into a blog :p so I'll just hash it out and bore you with the details. I'm sure you'll pick up on the exciting bits :)

Two weeks we took Chloe up to CHEO for her EEG. All went well with the exception that she wouldn't fall asleep. Tony, our tech, was really nice about it and even tried to stretch the test but alas, no nap.  So with that I was pretty sure we had just wasted everyones time and was bummed out. 15 minutes later everything changed. We met with Dr. Sell and he was really pleased to tell us that the hypsarrhythmia* is no longer showing on the EEG. What this means, if you're just tuning in, is that the thing in Chloe's brain that has been causing the spasms is no longer present (apparently). We can't use the term 'cured' (yet) but as of the tomorrow we're going to start weaning Chloe off the Prednisolone (VERY slowly). We couldn't be happier. Today marks 33 days since Chloe's had any spasms... Here's praying it continues.


*Hypsarrhythmia (hip-sa-ryth-mia) In simpler terms, it is a very chaotic and disorganized brain electrical activity with no recognizable pattern, whereas a normal EEG shows clear separation between each signal and visible pattern.

Movin' Right Along

So it has been just over a month since Chloe has been given the diagnosis of Infantile Spasms and as all things time just moves along. Chloe is still on Sabril but we've seemed to have hit a wall of sorts. She's still having the spasms but some days they're nothing more then a chin quiver and some days they're full body ones. Sporadically we get a day with out a single one but those are few and far between. Chloe's doctor at CHEO (Dr Sell) is having us monitor Chloe for another week before he makes his decision regarding putting her on Prednisone. I've been doing some reading and I'm still pretty unsure as to where I stand on this. A lot of pages are saying that though Prednisone is a intense drug, it is incredibly effective. It also has a lot of tense side effects. 

I guess I'm just rambling at this point. 

No use getting worries till the doctor tells us what's the what so... SWITCHING TOPICS...

Such a proud Pépère

Chloe has had an interesting month. On May 20th she got to meet her Pépère Dan (Kevin's dad) for the first time. We only had a day so we drove up to Sudbury to see Dan and sadly had to drive back home the following afternoon but it was so worth it. We're planning on having a Meet Chloe BBQ for Kevin's family sometime in August or July. It'll be nice to see everyone again!

Tickets, Tickets please...

On May 18th we found out that Chloe's Opa (my father) Craig had suffered another massive heart attack so on May 22nd Chloe and I hopped a VIA Rail train and traveled to St. Catharines to see him. Thankfully he is back home and resting after having another stent procedure. The bright side to this was that Chloe and I got to come up a few days earlier then we had planned which meant we got in lots of visits with Grammy, Papa, Grandma and Papa Raimondo, Oma & Opa and even Aunties Margie and Lindsay. 

We also got to visit a few friends who we normally miss when we're in town. Chloe got to meet her great, great Uncle Louis and Aunt Roxy which was great, she spent quite a few days just lazin' about poolside and even took her first trip to Niagara Falls. All in all I'd say she had a nice visit.

Surprise visits are always fun!

Next up is Chloe's first birthday... Stayed tuned <3

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

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

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...