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.

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!

 

A Baby Story

“Chloe Seguin”

Proud Parents: Cody and Keven Seguin

Birth at Grand River Hospital - Saturday June 11th 2011 10:22pm

Written by attending Doula - Lindsay Cooper

Waiting to head to the hospital

        It was a grey and overcast Saturday morning, I woke up to the sound of my phone at 6:40am. It was Cody was letting me know that she had contractions wake her up, and that these were different; more lower down in the abdomen than the previous pre-labour contractions she had been having the past few days. I told her that the only way we could tell if this was true labour was to time them so we could see if they were consistent. They were a bit sporadic so I told her to get some more rest and let me know when things progressed a bit more. I had a feeling in my gut that this was going to be “the day” so I took a nap. I woke up a second time to the sound of my phone with Cody reporting that the contractions were stronger, and coming about 4 minutes apart. I told her to call her midwife. She did and was told to meet their midwife at the clinic. The midwife checked the progress and Cody was 4cm dilated. The midwife sent them home with instructions to return again in approx. 1 hour, and if she was 5cm then they could admit her to the hospital. I met with the couple at their house. They had made plans with a close friend that day for a visit so I met Josh when I walked in the door. There was excitement in the air. Everyone seemed very calm and excited at the same time. The men were wolfing down sandwiches to prepare for the long haul. Mom was rocking on a birthing ball, drinking ice tea, and starting to notify close family members of her labour status on her cell phone.

We went back to the midwife’s office only to be immediately directed across the street to be admitted to Grand River Hospital. The midwife wasn’t there at the time, she was on her way to meet us at the hospital. We had Nasrin, Cody’s secondary midwife her primary midwife, Min, was off this weekend. The couple were admitted quickly and we settled into our small private room at approximately 1:00pm. Cody was great at handling the contractions all morning, she preferred to be sitting or laying when they were happening and was very positive and relaxed in between. Nasrin walked us through protocols, procedures and told Cody to rest as much as possible because the contractions were still quite spaced out and we wanted mom to rest as much as possible to keep up her strength for later. Soon she would be allowed to go into the tub and move around when things picked up more and she was more uncomfortable. 

Cody’s labour was progressing at great speed! She was close to 6cm dilated just under 2 hours of being at the hospital. Kevin and I did as much as we could. We were mainly focused on coaching Cody on her breathing. Cody preferred to have some space and little distractions so we tried to keep the room as quiet and provide only the physical contact that was needed, hand holding, water fetching etc. Cody was so kind and positive in between contractions like nothing ever happened, constantly making sure we were all OK. We could tell that they were getting harder on her, she would tense up and started to be a little more vocal with each contraction. It became clear that she wasn’t comfortable in the hospital bed anymore. 

Breathing through a contraction

usting the heat of the water, holding her hand through contractions and getting her water or chap-stick when needed. She often had her eyes closed and just laid there peacefully in between contractions. As I sat there I just stared at her beauty. She was a true birthing Goddess in my eyes. In between each 20 minute session of jets on the tub, the midwife would come in with her hand held fetal monitor to check the heart rate of the baby. Each time Nasrin would say that the heart rate was great and the baby was very happy. The jets would go back on and we’d monitor the intensity and feel of contractions from time to time. After 3-4 sessions of 20 minutes of jets, Cody starting to feel a bit “pushy” with a lot of pressure on her bottom. She decided quite suddenly that she wanted out of the tub at around 4:20pm. We got her out, had her go to the washroom and got mom dried up and back in bed for another exam to check the progress. Things were going so great in the tub that we all expected things to keep continuing at the same pace but Cody was only 7cm. 

The awesomeness that is Josh

Once Cody was out of the tub it was obvious that she had lost her rhythm and she was having trouble staying on top of the contractions. Dad and I looked on as the Midwife was explaining that a rupture of the membranes would help pick things up some more so that the contractions would be more effective. We held her hand and spoke with her for a few moments, We said we were there for her no matter what, we had gone over the risks and benefits and Cody decided to go ahead with the procedure. Cody liked it when I put my cool hands on her forehead and neck, after being in the tub she was quite warm. Kevin seemed quite composed during the entire labour, he respected her need for space, was constantly by her side providing words of affirmation which was so sweet to hear, and gave her soft kisses on her head. Josh was there for the entire day. Sometimes we needed him to leave the room while Cody was exposed but he took everything in stride and waited patiently outside the room with a smile that came easily and calmness that radiated from him.

Cody worked through another hour of hard labour, the midwife was providing some massage on her lower back while we helped mom focus on her breathing. This was a very quiet hour. Cody was doing amazing. She was able to rest and snooze a bit in between contractions. Things picked up quickly again. One thing we had noticed was that baby Chloe was a very active and happy baby in moms belly. She like to move around, a lot! She would move in between contractions and cause mom a lot of pain. Cody would finally get over a contraction and then Chloe prevented her from resting in between and would spur on more contractions. Chloe was sitting up high still and pushing into moms ribs made it hard for Cody to take the deep breaths she needed. Around 5:30pm after another exam Cody seemed to have stalled a bit in her labour, with no progress still at 7cm. The contractions had become on top of each other with very little rest in between with Chloe's movements, the pain causing Cody to throwing up the sandwich she had ate earlier in the day. Finally, after a time, Cody calmly stated in between contractions that she needed a rest and wanted an epidural. Nasrin explained the risks and benefits. In this particular situation it would provide mom with rest in between contractions to help reserve her strength for pushing later. It would also allow mom to relax her muscles better and breath more oxygen to Chloe. With Chloe sitting high up, we wanted more effective contractions to get her lower in the pelvis to be ready for pushing. 

The hospital staff came in and did the necessary exams and forms needed prior to the administering of the epidural. Along with the epidural the staff was going to administer a very small amount of pitocen to help get those contractions effective at pushing Chloe down farther in the pelvis.  Kevin and I were asked to leave the room when the epidural went in. Kevin and I were very tense, things were getting very intense and I could tell Kevin was scared. Like mom, dad needed his space when I tried to check in with how he was doing emotionally. We tried to talk about light-hearted topics while we waited to keep our minds off of what was going on in the room. All of a sudden we heard a loud “BANG” and a sharp intake of breath by all the staff. Kevin and I nearly jumped out of our skin. Our hearts were in our throats. It sounded like Cody fell off the bed or something. Then we heard laughter, Kevin and I looked at each other and said everything must be okay if someone was laughing. Boy did they give us a heart attack out there.  At approx. 7:00pm we were allowed back in and as Nasrin let us in, she explained that the loud bang was them lowering the bed and all of a sudden the bed hydraulics gave out and dropped, startling the staff. Thankfully the midwife and techs caught her before she fell off! Everything was fine, we all had a good laugh. It helped to break all the tension. I rushed to Cody's side. I asked her how she was doing. She replied she was good and her butt was “tingly”. I laughed, It was nice to see mom back to her old self again. A complete flip in personality, she was talking, telling stories, calling family and updating them on her progress. Seeing mom happy again helped put Dad and I at ease. I could tell Cody was initially disappointed that she wasn’t able to do a natural birth but she quickly realized that it was the best choice for her at the time and she was prepared that things wouldn’t necessary go the way she planned. The happy couple had a lot of supportive friends and family so we had the next hour to relax and take visitors in 1-2 at a time to say hello. They had close college friend Josh, parents of Kevin; Fran & Brian, Cody’s co-worker Crystal, and friend Meghan. Cody’s dad and step mom were en route to the hospital.

At 8:00pm after all the visitors had a chance to wish the couple good luck the hospital staff came in again. There was such a cute conversation started about birds, nesting and eggs between the staff members and Cody. The staff was excellent, they were very kind and informative. The O.B. did another exam and announced that Cody was 9.5cm dilated! There was just a small lip of the cervix in the way but the baby was nice and low, the head was in a great position, face down. This helped reassure mom that she made the right decision and excitement kicked into high gear; to think we’d get to meet baby Chloe very shortly! The Dr. said one more hour and it would be time to push.

This hour was just nice quiet conversation between Kevin, Cody and myself. We had a nurse the whole time Cody was in bed after the epidural. Her name was Sarah, she was nice and would answer any questions we had regarding the epidural effects and what to expect with the pushing stage. At 9:30pm, Sarah said it was time to push, we got the bed ready, the stirrups and equipment was all ready to go.  I was holding Cody’s right leg up to her chest and Kevin was helping Cody’s head and shoulder to keep her chin to her chest. Cody was to hold her breath and push for a count of 10, exhale and take another deep breath in and repeat 2 more times. We did 2 sessions of pushing when we heard that Craig and Susan (dad and step mom of Cody) made it to the hospital just in time. Cody insisted she needed to see her dad before Chloe came out, so we stopped the pushing, put moms legs back down and covered her up. Craig and Susan had a quick visit and once they left we got right back to it. We only did one session of pushing and I could see the top of the baby’s head. I told mom and dad and asked Cody if she wanted the mirror. She did. We got that rearranged, the rest of the hospital staff came in and we pushed some more. Mom was a champion when it came to pushing, she only pushed for about 20min. Each time the head was more and more visible. It was happening so fast! Cody reached down to touch the head and started tearing up. It was amazing to see the look on mom and dads face. They were glued to that mirror the whole time. 

10:22pm was the official time that Chloe made her debut into the world. Many tears were had by mom and dad. She cried right from the get go so we placed her up on moms chest for some skin to skin. She was a nice size, nice and pink with brown hair. She had a bit of fluid in her lungs and Cody was bleeding a bit so the cord needed to be cut and clamped soon. After dad cut the cord Nasrin took her to be cleaned up, measured, weighed and suctioned. I was acting as paparazzi snapping all the pictures I could. There was a special moment where Chloe held dads finger in her hand. She was very vocal and alert all night. Big, bright, blue eyes taking in everything.

Chloe weighed in at 8lbs 11.6oz. She was 20.5cm. She was a big girl! We were all guessing 8lbs 2oz. She had a bit of damp lung which is fairly normal and would clear up within 24hr. Since Cody had the epidural she needed to stay at the hospital for 8-10 hours. So it looked like they would get to spend the night. I took pictures of all the guests holding the newest member of the family and proud parents Cody and Kevin. I packed up all my things, congratulated and gushed over their beautiful girl, said my goodbyes, and took one final picture of me with the parents and Chloe.

It was by far one of the most exciting and interesting days of my life. I know that whatever I write will fail to capture the perfect joy that these people expressed when they met Chloe for the first time. I felt truly honored to be able to be a part of such a sacred moment between Cody and Kevin. Thank you so much for this opportunity and congratulations on your beautiful, perfect daughter.

Welcome Chloe-Lee

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!!

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...