Mothers Day without my baby

Mothers Day was not an easy day to get through. I kept thinking that, at this time the previous year, we had taken Khloë to the Toronto Zoo and spent the weekend with her Aunt Crystal and Uncle Lukas. And then this year… she is gone.


Memory for Mothers Day

I was happy to see that quite a few people wrote special messages about Khloë on my Facebook Timeline. I also received some texts from friends who have not forgotten my little girl. The above picture is not the best quality, but it is one of my favourite “selfies” taken with my Sweetpea. Her smiling face says it all! She was a shining star.

Khloë: 10 months old (44 weeks)

Note: I am wayyyy behind but a lot has happened in the past month that has not allowed me to update regularly!

My baby gets a little older every week:


44 weeks (October 7)

44 weeks (October 7)


Khloë came with Jordan and I to our young adults group at church on Wednesday evening. I was hesitant to go because I wasn’t sure how cranky she would get near bedtime. I can’t leave her in the nursery with the other kids anymore–can’t risk another kid touching her toys and then her putting them in her mouth–so she stayed with Mommy and Daddy during the group. She was happy and chatty and made everyone smile!

Thursday morning we went to Pembroke Hospital to pick up Khloë’s AFOs. They are molded hard plastic braces (with cute butterflies!) that she will wear for 1-2 hours a day for two weeks, as a breaking in period, and then we are to slowly increase that time. The braces are meant to correct the slight curve to her feet.


Minnie Mouse

Sweetness

I ordered two bottles of sambucus (black elderberry extract) from Swanson Vitamins and started giving Khloë 5 ml once a day to boost her immune system. Many SMA kids are given this extract and I decided we should try it out.

At 3 am Saturday morning I woke to the sound of Khloë crying. I checked on her and felt wetness on her shirt. Turning on the mini flashlight we keep by her crib, I saw she was covered in vomit. I called to Jordan that she’d been sick, and as he came into Khloë’s room she started to vomit again (through her nose and mouth). I quickly turned her on her side so she wouldn’t choke and Jordan quickly suctioned out her mouth. Her breathing looked normal, but there was a lot of thick mucous in her vomit. I stripped off her pyjamas and moved her to the change table while Jordan pulled the sheet and mattress cover off the crib and tossed it in the laundry basket. Then I attached the pulse oximeter probe to one of her toes to check her o2 levels. They hovered around 94-96, with heart rate high 140-150s. She ended up puking a few more times. We were concerned enough that we decided to bring her to the ER in town. Once we got there, though, she seemed better. The doctor ordered an x-ray which showed pneumonia was clearing up but wasn’t gone. He was unsure as to what was causing her to vomit because she had no fever or other symptoms. He suggested we stop giving her sambucus for a couple days to see if that was the culprit, and then re-introduce it in smaller amounts. By the time we got home, it was after 7:30 am. We all went back to sleep for two hours. When Khloë woke again, I let her nurse and then did some chest PT. She threw up one more time a little while after that. I kept a close eye on her for the rest of the day, and after a great nap in the afternoon, she seemed back to normal again.


New hooded towel

And then Sunday morning she vomited at the end of her feed! This time it was very yellow and looked like bile. I vaguely remembered reading something about bile in the enteral feeding booklet we were given at CHEO but I couldn’t find the information I was looking for. For the rest of the day she was fine. A couple times, when I vented her G-tube, it looked like bile in the syringe. We ended up going to our friends for turkey dinner and once again Khloë was perfectly fine through her feeds and was in good spirits. We got home around 8:30 pm and I realized I hadn’t yet changed her G-tube dressing. When I unwrapped it, I saw that the tube measured at 6 cm (instead of 10 cm). I slowly pulled it out to 8.5 cm but there was quite a bit of resistance so I left it. I started to think that maybe the vomiting and bile had something to do with tube migration. Jordan called General Surgery at CHEO and spoke with a doctor and the doctor told us to bring Khloë to the Pembroke Hospital to have it checked out. That’s a 30 minute drive and neither of us wanted to bring her back to the ER. We figured we would try once more to pull the tube out to 10 cm, and luckily this time it worked! No more vomiting and no more bile!


Playing the xylophone

Daddy also taught Khloë to “play” her toy xylophone. She loves tapping at the keys!

We received the brand-new suction machine this week, along with a few enteral feeding and suction supplies I had ordered. Our nurse coordinator from CHEO called to check on Khloë and remind us about next Wednesday’s appointment. And we decided to cancel our upcoming weekend trip to Kingston because my mom was still sick.

A whole lot of playing “catch up”

After two weeks of living in our new house, Jordan was sent away on an exercise in the U.S. until the first week of March and I was left on my own. I don’t know anybody here, which made it kind of lonely. I ended up going back to Kingston for four days, staying at my mom’s house and visiting my family and old co-workers. I was really missing my nephew Ashe, so it was great to get to spend so much time with him. He’s such a happy child!


Playing iPhone games with my buddy!

Playing iPhone games with my buddy!


I’ve noticed that it seems to snow every day here, even if it only lasts a few minutes. The snow is also heavier and sticks to the ground much longer than I’ve seen in Kingston. I hate shoveling. Now that it’s April, the snow is finally melting.

When my darling husband returned, he used up the rest of his leave and ended up with the majority of March off work. We spent a weekend in Kingston staying with friends and I got to visit with Ashe again (in the above photo). Little monkey was 20 months old in that picture, and as of yesterday he’s now 21 months. He’ll be two this July, which is insane!


Ashe @ 20 months old

Ashe @ 20 months old


My mom came up for the second last weekend of March. We painted the master bedroom:


Before

Before

After

After


I am SO excited about moving our furniture into that room. I’ve always wanted a purple room and Jordan said he didn’t care what colour our bedroom was. 🙂 While my mom was here we did lots of cooking and baking. She showed me how to make mushroom risotto. OMG, delicious! I am not a fan of rice, and her risotto was like eating dessert. We also used my Kitchen Aid mixer for the first time (she wants to buy one) and made caramel sticky rolls from scratch and applesauce muffins.

We also spent Easter weekend in Ottawa at his sister and brother-in-law’s. Our niece, Zoë, is just over a year old now. She’s still shy and takes awhile to warm up to us. She’s pretty cute. We didn’t do anything fancy, just hung around the house or went shopping, and had Easter breakfast at their church on Sunday morning, which I think we did last year as well. On the drive home, we detoured through Fort-Coulonge because Jordan wanted to see the red covered bridge:


Standing with the covered bridge in Fort-Coulonge, Quebec.

Standing with the covered bridge in Fort-Coulonge, Quebec.

Snapshot while driving through the covered bridge (iPhone).

Snapshot while driving through the covered bridge (iPhone).


Received a chocolate package from the Attewell’s in Germany:


Chocolate stash from Germany (iPhone).

Chocolate stash from Germany (iPhone).


I’ve begun learning how to use my Canon 60D camera on Manual mode. With the help of this book:


Understanding Exposure by Bryan Peterson

Understanding Exposure by Bryan Peterson


It’s something I’ve always wanted to do and I’m now taking the time to teach myself. Doesn’t seem as difficult as I expected, but I’ve still got lots to learn. My camera came with a Canon 18-200mm IS lens and I have been saving up to purchase the Sigma 17-70mm OS lens. One more week and I should be able to buy it. I’m really excited! Not only for a new lens, but for Walt Disney World!

That’s right, we are going to the World where dreams do come true! We are booked into POP Century, a value resort, for 8 nights/9 days in October. We are planning to drive and will also spend a night and full day in Washington, D.C. I’m a little obsessed with Disney World right now. I’ve done so much research and planning already. I even have an itinerary done up in Excel. Okay, I’m crazy. But anyway, I’m going to master Manual mode on my camera and take amazing photos on our vacation, I just know it! 😉