Saturday, 3 November 2012

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!

Wednesday, 3 October 2012

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.

Thursday, 26 July 2012

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...

Wednesday, 25 July 2012

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.

Monday, 2 July 2012

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.

Ohhh... Pretty sparkles!


Friday, 15 June 2012

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.