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.

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.

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!!