When all you’ve known is SMA

I was washing dishes this morning and thinking about Khloë and then about the new baby. And I realized that this time around, if this baby is healthy and does not have SMA, then our life will be filled with all these milestones that we’ve never experienced before. How crazy is it that, as a second-time mom, I have never had the joy to watch my baby grab for a toy within her reach? I never saw my baby learn to roll over or sit by herself for the first time; she never crawled or pulled herself up to standing; she didn’t even take her first steps or learn to feed herself. All of these little things will be brand-new to us.


Mommy and her girl

Beauty

Instead, we watched our baby grow taller but also weaker. She had her first surgery at 8 months old–a feeding tube to allow her proper nutrition. Then we learned how to operate a Joey feeding pump, clean out feed bags, prepare formula, and care for her tube site. After that intervention, to help prolong her life, came the BiPap machine and another hospital stay. Any time Khloë took a nap or went to sleep for the night, Mommy or Daddy would put the Pixi mask on her face, check the leak, make sure she was comfortable, and then off she would go to dreamland. By the time she was 11 months old, she was requiring us to suction her mouth and throat much more often; this meant she was losing her ability to swallow. Twice a day, we would perform a cough treatment to make sure all the yucky stuff in her lungs got out because she couldn’t cough it out on her own.

All these things, they were Khloë’s special milestones.


After gastrostomy surgery

But I had the most amazing daughter. She liked music and loved it when Daddy helped her play xylophone or strum a guitar. She enjoyed watching “The Magic School Bus” and “Chuggington” on Netflix. She especially liked when one of us would dance around with her in our arms! She would lay contentedly on her ottoman, playing with her Do Not Enter sign and Sharkie, until she dropped one of them; then she would wait patiently for Mommy to pick the toy up and give it back to her. She rarely complained or cried. She was always so happy, no matter what we did during the day. Her giggle will always be the cutest thing I have ever heard. I think that’s what I remember the most.


Playing the xylophone

Things are going to be very different when the new baby comes. I think we are up for the challenge!

Khloë: Forever 13 months old

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

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.

Khloë: 12 months old (52 weeks)

Here is Khloë’s final Hello Kitty photo!


52 weeks (December 2)

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.


Eggs make great toys

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.


Ashe playing with his cousin

Sweetness

Ashe loves his cousin!

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.

Khloë: 11 months old (51 weeks)

My girl’s last week as an eleven month old:


51 weeks (November 25)

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!


Monkey

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!


Strumming the guitar

Daddy showing her the harmonica

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.


Khloë and Santa Claus

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.