Khloë: 8 months old (37 weeks)

Here we go:


37 weeks (August 19)
37 weeks (August 19)

At the beginning of the week CCAC sent an Occupational Therapist and Physiotherapist to our home to meet with Khloë. The ladies were very friendly and Khloë gave them lots of smiles. I showed the OT the feeding chair and the infant rocker chair we currently use and explained that, although they work fine right now, Baby Girl is growing quickly and will soon be too tall for these chairs. Since she can’t support her head when upright, Khloë needs to be partially reclined when sitting in either of her chairs. These chairs are meant for babies who develop into strong toddlers who can hold their heads up and don’t need extra support. The OT said she would look into finding us a tumble form chair.


Beauty

On Wednesday we went to Prenatal Nutrition. In the late afternoon, Mary from Infant Development came and worked with Khloë for an hour. We agreed that she would benefit from infant massage and we will start that in September.

The most important part of the week was Khloë’s appointment at CHEO on Friday. We met with an anesthesiologist to discuss Baby Girl’s upcoming G-tube (gastrostomy) surgery. It looks like surgery will take place next Wednesday, August 27th, but we must wait for confirmation. In our original discussion with the surgeon, we were told to expect three days in the hospital for recovery and training on how to use the feeding pump. I voiced my concerns to the anesthesiologist about fasting, as it’s not good for an SMA child to go more than 6 hours without adequate nutrition–Khloë will need to fast starting four hours prior to surgery. Other SMA families advised us to have PPN (peripheral parenteral nutrition) given to Khloë, but even though I asked for it and the doctor said she would make a note about it on Khloë’s chart, I doubt she will get it. We were told that it’s not protocol at CHEO to do PPN.

The following quote, taken from the “Consensus Statement for Standard of Care in Spinal Muscular Atrophy”, is on the dangers of fasting:

Spinal Muscular Atrophy patients are particularly vulnerable to catabolic and fasting states [and] are more likely to develop hypoglycemia in the setting of fasting… Thus, it is necessary to avoid prolonged fasting, particularly in the setting of acute illness, in all Spinal Muscular Atrophy patients. Nutritional intake should be optimized to meet full caloric needs within 4 to 6 hours after an admission for acute illness, via enteral feeding, parenteral feeding, or a combined approach as necessary. Prompt postoperative caloric supplementation is recommended to avoid muscle catabolism, particularly in a child with reduced fat store.

As long as the surgery goes well, she’ll be given Pedialyte; if she tolerates that and has been extubated with no breathing issues, I’ll be able to breastfeed. If Khloë is too tired to nurse, I can give her pumped milk with a syringe. I have no idea how long she will end up going without eating if she isn’t given PPN and can’t breastfeed right away.


Outdoor #1

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Catch that tongue

On a happier note, my sweetpea has added the sounds “guh guh” and “ba ba ba” to her repertoire of baby babble. She’s being saying “mum mum mum” for awhile now but usually while upset. She even mouths it without the sound coming out, which is really cute. She also tries to copy me when I make a certain noise with my tongue. It’s hard to describe but she’s fascinated by watching me do it!

The Great Summer Spectacular BBQ

Back in the beginning of July, my mom hosted a big party at the cottage. The party was to celebrate three things: my nephew Ashe’s 3rd birthday, Khloë’s 7 month milestone, and my brother Mark’s visit from Newfoundland.


Sailboat dream

Jordan, Khloë, and I spent a couple extra days before the party hanging out at the cottage. We slept in the guest cottage–the first time I’d slept in there in about five years!–and enjoyed the beautiful weather and laid-back atmosphere. The party came about three weeks after Khloë’s heart-wrenching diagnosis, so it was wonderful to get away for a mini-vacation.


Happy 3rd Birthday, Ashe!
Happy 3rd Birthday, Ashe!

Mommy loves her girl

Birthday photo shoot

All our friends and family came out on July 5th to celebrate with us! There was plenty of great food and of course lots of baked goodies courtesy of me. ;) I even made Khloë a special chocolate pudding, which I think she enjoyed.


Party decor

Sweet treats

Sign your name!

Princess cupcakes
Princess cupcakes

Keesje and I used last year’s “Thomas the Tank Engine” decorations and added in some Disney Princess bits n’ pieces for a girly touch! There were lots of outdoor toys for the kids, including a water table. Plus swimming and paddle-boating!


Lukas & Crystal

Baseball boy

Food time

Water table

Sisters

Smiley summer girl

Chillin' in the pool

What a great party! I am so happy that everyone had a great time. Let’s do it again next summer!

August is SMA Awareness Month


SMAawareness (GettyOwl Foundation)

GettyOwl Foundation

On August 9th people around the world lit a candle for those fighting the battle against Spinal Muscular Atrophy and for those who have gained their angel wings.


My name is Khloë

Some amazing friends and family honoured Khloë and shared their candle photos on Facebook. I put together a collage of all the candles that were lit for my sweet girl:


Light a candle

Feeling in the mood to donate to a charity? Families of SMA Canada helps Canadian families with support and funding. They’re helping us, but more on that later. :)

Khloë: 8 months old (36 weeks)

I’m totally loving little baby skirts:


36 weeks (August 12)
36 weeks (August 12)

It has been two months since Khloë’s diagnosis of Spinal Muscular Atrophy (Type 1). I never thought that we would get through those months without some sort of emergency popping up, but I am happy to say that our baby girl is doing okay! She can still breastfeed, eat pureed foods, laugh, smile, and play with her toys. That is amazing!


Chapstick lover

Flowers and pearls

On Thursday I spoke with Dawn, the neuromuscular nurse coordinator at CHEO. She gave us the news that Khloë was placed on the emergency elective surgery list. This means that Baby Girl will be getting a G-tube put in within the next few weeks. We don’t have a date yet, but the surgery requires a 3 days hospital stay. We are doing the surgery proactively, as Khloë will eventually lose the ability to swallow. She can still have the G-tube and eat orally.

We had another visit from the nurse this week to finish paperwork.

Khloë weighs 16 lb 4 oz, is 28 inches long, and is still wearing size 3 diapers.

You're just as sane as I am. — Luna Lovegood (H.P.)