Friday, 18 May 2012

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!!


  1. I will definitely keep her in my prayers, but Praise Jesus for how much better she is doing already! I'm so glad your Mommy instincts kicked in and that you were able to get her seen about these episodes early. God was telling you something and you heard. Love the blog, keep up the good work... but I must admit it makes me miss you even more :S But seriously tho, so happy to hear the great news :)

  2. I'm so glad her EEG was so much better, and I'm praying that her spasms will just stop and her little brain can continue to grow and develop as it should! I miss you guys lots...