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.

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.

A Good Week

Happy day after Canada Day!

What a great weekend. Kevin's parents came up, along with Kevin's little sister and Aunt Becky and Uncle Denis. Saturday night we all went to the Hartwigs' for a barbeque and fireworks. What a fantastic time. Chloe impressed us, not even flinching or getting upset with the noise or the fact she was up past 11, She even smiled during the fireworks. Seriously, a great time.

Joyously Chloe has been spasm free for a week now!! We are overjoyed with this first (of many, Lord willing) small steps. 

As it stands it seems as if Chloe's meds seem to be leveling off where as her appetite seems to have disappeared, we suspect this is because of constipation. A few nights ago she had bad go of some milk that led to some midnight vomiting which has made feeding her even more difficult. Add that to the constipation and we've had one cranky baby. We think we now know what the difficulties are so we can deal with it but prayers would be appreciated. Thankfully she is nursing so it's not as bad as it could be. When she is eating, she's on a soft diet for the next little while. Unfortunately the Prednisone seems to effect Chloe's swallowing so we've had a few choking scares. Her doctor is sending her for something called an Eating survey which means they'll give Chloe something to drink that they can x-ray to see if there's anything that causes the food to block when she eats. That hasn't be scheduled but will be coming soon.

Chloe's next EEG is July 12th so we'll have a better idea of where things are. 

Sorry for the short post.

~C

Ohhh... Pretty sparkles!

 

Oh What A Year...

For me?!

Chloe-Lee hit the big O-N-E this past Monday (for her birth story, click here). We came into St. Catharines on Friday and Friday night Chloe, Kevin, Dad, Sue, Aunt JoAnne, Aunt Lori and I all went to Kimonos in Welland and had an excellent time. Even the staff got into the swing of things, signing one of Chloe's birthday cards in Chinese. Seeing Chloe's name in a different language is awesome. Chloe got her first taste of birthday cake and proceed to share it with the floor, table and I'm pretty sure the couple sitting behind us. At one point she even pushed her face into the cake which was hilarious!

Saturday Kevin and I got to attend the beautiful wedding of our good friend Pat and his lovely bride, Hollie-Rose. Chloe spent the afternoon with Grandma and Papa Raimondo then spent the evening with Grammy and Papa Cameron. It was a nice day but I sure missed Chloe. We went to a mall to kill some time (getting to the church 2 hours really requires time-killing) and there were babies EVERYWHERE :p

Best feeling EVER

Sunday we had a bigger party at my parents place. The week previously I had decided to build Chloe a birthday tutu, make ti-colored pennants and hand make the party favors; personal pinatas. I don't think I realized just how much I had bitten off but thankfully my fantastic Aunt Dana (along with Kev) cut out all the pennants and Margie, the absolute ANGEL that she is, pieced together the tutu while I made Chloe's Birthday cake and cupcakes (which Margie also helped decorate till past 2am!). Chloe spend a good portion of her birthday in the pool, wee waterbaby that she is and even tuckered herself out enough to fall asleep in my arms while we floated and nursed in a waterchair. It occurred to me while Chloe and I were just floating/nursing that a year ago I couldn't see to her first birthday, I was so in awe of just her having been there, in that moment of time and I'll tell ya, it was the best part of her whole birthday, just the two of us floating along. 

Mine! All mine!!!

Monday we headed to Kitchener for Chloe's last Roots of Empathy class. I am so, so grateful to have gotten the opportunity to be apart of such a fantastic program. I highly encourage anyone to look into if it's in their community if they have wee'un. What a blessing. The children had put together speeches, an insanely difficult scavenger hunt with a dang near impossible secret code called PigPen, gave letters, a ROE Teacher shirt for Chloe and a whole bunch of letters and drawings. My aim is to make a scrapbook for Chloe, to show her just how loved she was by these kids. Unfortunately we weren't able to get any visiting in with our friends in Kitchener. I'm hoping to fix that the next time I swing up there.

On a more serious note, Chloe started Prednisone today. She's on a high dose (20ml x2 day) and so far so good. She has to take it in conjunction with the Sabril. It kills me that my baby has had to be so deeply medicated so early in life but I also acknowledge the necessity of the meds. We have another EEG and consult arranged in 3 weeks and Lord willing we will see a vast improvement in Chloe's EEG. 

Please, for my friends who pray, we ask that you would pray that God would heal Chloe from these spasms and that her brain would be fine and untouched. Also, that Chloe would be spared any of the side effects from the Sabril and Prednisone.

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...