It is with a heavy heart that I make this post… On January 16th, our sweet girl lost her fight with Spinal Muscular Atrophy.
December 3, 2013 – January 16, 2015
We are heartbroken.
Khloë was hospitalized on January 12th with aspiration pneumonia and a collapsed lung. She passed away from complications from these issues. Her body was too weak. Jordan and I, as well as close friends and family, were with her to the very end.
We love you, Sweet Pea.
I will add missing journal entries when I feel that I am able to.
On December 3, 2014 my baby girl turned one year old! I decorated a pink backdrop with Frozen-themed snowflakes and tissue paper poms, dressed Khloë in a turquoise lace romper, and took some photos.
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Here are some of my favourite pictures from her birthday party:
Here is Khloë’s final Hello Kitty photo!
52 weeks (December 2)
She turned 1 year old on Wednesday! How amazing is that? We officially have a toddler! Jordan and I have gone through such a whirlwind these past six months that it is such a relief for Khloë to reach this milestone. We love our baby girl so much and only want her to be healthy and happy… She is always happy and right now she is as healthy as she can be.
We didn’t do anything special on her actual birthday, which was the 3rd, because we have a birthday party planned for the upcoming weekend. Khloë was very junky-sounding for the majority of the day so we spent our time playing with her toys and singing nursery rhymes in between rounds of coughs, chest PT, and suctioning.
On Friday my family arrived. The house instantly became chaotic but it was great to see everyone. We’ve had to cancel trips back home too many times! Khloë was a bit overwhelmed at first, but after a good nap she welcomed all the extra attention. In the afternoon, Michelle and two of her children came over for a quick visit since she wouldn’t be able to make it to the party. She made beautiful Frozen-themed cake pops! The evening was spent working on decorations and goodie bags.
The birthday party guests on Saturday consisted of my mom, two sisters and their significant others, my nephew, cousin, Ryan & Stacey and their girls. We had invited two other families but both had to cancel due to illness. We had so much food since we had planned for more people. Khloë ended up taking a nap during the majority of her party and while she was sleeping we all played Pin the Nose on Olaf. Ashe loved being reunited with his cousin and it was so cute watching him play with her.
Recently I’ve had to pack up a box of Khloë’s clothes. She currently wears 12-18 month or 18 month shirts, pants, and dresses. We measured her at home and she was 30 inches long! Diapers I have switched to size 4 Pampers.
My girl’s last week as an eleven month old:
51 weeks (November 25)
She couldn’t manage to sit up without coughing, so we did our photo shoot laying down this week. I have been dying to have her wear those sparkly leopard print pants!
The biggest thing this week was the increase in the amount of times Khloë needed saliva/mucous suctioned out of her mouth. This is definitely a progression of her disease; she will slowly lose the ability to swallow. She also coughed quite a bit on her own, which in itself is pretty good as they were strong coughs, but they sounded phlegmy. However, she wasn’t sick.
I used the week to prepare decorations for her upcoming birthday party. I’m also working on decorating the backdrop for her birthday photo shoot. The blue lace romper I ordered from OnceUponATimeTuTus on Etsy arrived!
On Thursday the Occupational Therapist from CCAC came to take Khloë’s measurements. We have started the process to get her a medical stroller because she is quickly growing out of her current “baby” stroller. The one we use now allows her to lay flat, but her feet are touching the end so we need something different. Plus our stroller is not meant to hold heavy medical equipment. We will be working with a vendor in Ottawa who will bring us sample strollers to try out. ADP and ACSD should cover the cost of the stroller. The application, though, could take 4-5 months for approval. While we wait for that, I hope the vendor will let us borrow the stroller we eventually pick out until payment comes through.
Also, we received the grant money for enteral feeding supplies from ADP. Our application was submitted in August and was just approved–that’s how long this stuff takes! A large portion of the checque will go toward purchasing a Kangaroo Joey feeding pump and the rest is meant for supplies (syringes, Mic-key buttons, extension sets, feeding bags, etc). I totalled up our invoices and, since September, we have already spent $500 on enteral feeding stuff for Khloë.
My cousins Delia and Andra, and four of Andra’s kids, came to the house to visit on Friday. Little Eleanor played with Khloë the whole time!
After they left we packed up and drove to Pembroke to see Christkindlmarkt at the Germania Club. Inside there were many vendors selling European-style Christmas items. We pushed Khloë around in the stroller, even though it was pretty packed and hard to navigate. When we first arrived, we parked the stroller near the back in the quietest spot we could find and set up her feed. The lady whose stall we had stopped near came out to talk to Khloë while I got everything ready. She didn’t even bat an eye when I pulled up Khloë’s shirt to attach the extension set to her Mic-key button. She was very friendly and said we had found the perfect spot to get our baby’s milk ready! When we were leaving I saw there was no line to see Santa, so Khloë and I got our picture taken.
We don’t do the Santa Claus thing, but I thought we should at least get a picture. That was the best one Daddy could get.
Khloë is laying down for this week’s photo. She’s having difficulty being upright for any length of time.
50 weeks (November 18)
Not a whole lot went on this week. We made the trip to CHEO for Khloë’s first RSV vaccination on Friday. As mentioned previously, she will receive the Synagis shot once a month until March to protect her against this nasty bug. Once we registered, she was weighed (19 lbs) and then given one injection. She did get upset, but it didn’t last long.
A week ago I ordered a petite size Wisp mask for Khloë. I really dislike how the Pixi fits her face. Unfortunately, the headgear is too big so we can’t use it yet. The mask itself is a good fit. We are trying to rig something up so we can use the mask on her with either the velcro hat or Pixi headgear (which sort of fits). Very frustrating. But for now we have to keep using the Pixi for BiPap.
The above photo is Khloë’s nighttime set-up in her bedroom. On the far left is the Kangaroo Joey feeding pump and behind it on the stand is the Trilogy BiPap machine. Sitting by her head is the CoughAssist and at her feet is a Masimo Rad8 pulse oximeter. On the floor is her suction machine. Everything within easy reach in case of emergency. All of these pieces of equipment aid us in managing our daughter’s neuromuscular disease!