Khloë: 8 months old (35 weeks)

Here she is in all her 8 month old glory! 🙂


35 weeks (August 5)

35 weeks (August 5)


Oh, I remember when that headband was a little big on her…

A representative from Community Care Access Centre (CCAC) came to see us this week. Tim introduced us to the program and explained what CCAC can offer Khloë: a nurse to come and make sure we are using the equipment correctly (suction, pulse ox, CoughAssist, etc); shift nursing if needed (we aren’t at this point in her care yet); respite care; an OT, PT, and dietician to also come to our home; and when she’s old enough a speech therapist. Tim said he would write the paperwork that will qualify Khloë for Enhanced Respite Funding, which is a huge relief to us.

On Wednesday Khloë and I finally made it back to Prenatal Nutrition. I think it had been almost a month since we were there. It was so nice to see the girls again and I couldn’t believe how big all the babies were! And we found out that Chantel is 6 weeks pregnant!


8 month collage

8 month collage


A nurse, Betty, came on Friday to review suctioning with us and she evaluated Khloë’s chest. Her lungs sounded clear at the time and it turned out we are using the suction machine correctly.

Khloë’s little friend Raylyn turned 1 year old on Saturday! We made sure no one was sick before agreeing to go, and am I ever glad we did. There was a ton of amazing food and the kids did great with Khloë–she didn’t get mauled too much! Daddy even snuck her a cupcake and she enjoyed licking all the pink icing. 😉


Blue headband

Beautiful grin

Oh those eyes

On Sunday we packed up the car again, drove to Ottawa, and checked into Rogers House where we would be staying the night. What I love about Rogers House, the palliative care building, is that it’s located directly behind CHEO, the staff are friendly and adore Khloë, it’s free, and parking is included! That definitely helps us out since we make so many trips to Ottawa. So far we haven’t had any issues getting a room when we need one, but they are limited.

Monday morning we walked over to the hospital and met with Carlie, the respiratory technician. She showed us the new model of CoughAssist (E70) and trialled it on Khloë. Baby Girl really did not like it! I don’t blame her, as I’m sure it feels weird, but it’s something she will have to get used to. The machine simulates a cough by using pressures on inhale and exhale, which will help to clear secretions (saliva, mucous, etc) from her lungs. Since Khloë can’t inhale or exhale upon command, we plan on using the machine in the beginning just on inhales to exercise her lungs and keep them healthy. Carlie put in the order and we should have CoughAssist and the pulse oximeter by our next appointment in September.

After that appointment, Jordan and I registered at the lab and had blood taken for genetic counselling.

Khloë: 6 months old (28 weeks)

My girl is six and a half months old:


28 weeks (June 17)

28 weeks (June 17)


At the start of the week we had an appointment with Dr K, Khloë’s family doctor, to discuss her recent diagnosis of Spinal Muscular Atrophy Type 1. She wanted to see how we were handling the news and had a nice discussion.

On Wednesday we had an enjoyable morning at Circle Time and Prenatal Nutrition. Khloë loved watching the other babies. She’s pretty content to lay on her wedge, slightly propped up, with a toy while we make lunch. The next day we hung out with Amanda and her boys at play group and then continued over to the marina playground for a picnic. Khloë fell asleep in the stroller on the walk over. A play date with a mom and little boy we met at the doctor’s office was supposed to be on Friday, but they cancelled due to a contagious skin condition.


Juicy Couture

Swinging

And Sunday after church we drove to Ottawa. Monday was a pretty full day even though there were only two appointments. We met with Debbie at CHEO, the Occupational Therapist (OT) assigned to Khloë. She told us we are doing a great job in regards to the proper head and leg supports in the stroller and car seat. I brought some mashed banana and sweet potato for Khloë to eat and she did well, no choking. She liked the banana best, I think. The texture of the sweet potato might have been a bit much for her. Debbie gave us the go ahead to continue with purees and watch for symptoms like an abundance of drooling, choking, or coughing while she’s eating.


6 months collage

The second appointment of the day was at Roger’s House, the pediatric palliative care building. We met with Nancy and a couple of the doctors, and then toured the facility. We will be staying there in July when we have two days of appointments for Khloë. It seems like a great place for kids with life-limiting illnesses and their families. Nancy sent us home with some paperwork to fill out.

No changes in regard to weight, diapers, or clothing sizes.

Khloë: 6 months old (26 weeks)

My growing girl and her Hello Kitty doll:


26 weeks (June 3)

26 weeks (June 3)


Each week it’s a little more difficult to get a perfect photo with her doll. Khloë’s neck control hasn’t improved and she is constantly falling over during photo shoots. Poor girl. It helps having Daddy there to act silly for her, which causes her to look up and try to hold her head steady.

Jordan started parental leave this week. He will be off until the end of November. Perfect timing because we will have many trips to CHEO and also to the pediatrician in Ottawa. In between all these appointments, we are planning to take two weeks this summer to go back home to New Brunswick so that Khloë can meet her great-grandparents and other family members.


Purple zebra

I'm six months old!

I’m six months old!


We went to Circle Time for the first time this week. It starts right before the Prenatal Nutrition group. Basically we sit with our babies on a large round mat and sing songs and play with them. Afterward, those of us registered with Prenatal Nutrition stayed and made a ground beef and pasta dish for lunch. Khloë did really well missing her morning nap, but that meant by the time we got home she didn’t want any naps! I find if she misses one nap, then the rest of the day gets messed up for nap time. But that’s okay because we need to get out of the house once in awhile!


Eyelashes

Finally, we had a visit from Baby Welcome Wagon. We were given a few coupons for free gifts around town, including vouchers for free flowers, a teddy bear, $5 at Giant Tiger, etc.

Khloë: 4 months old (20 weeks)

Baby Girl and her weekly Hello Kitty shot:


20 weeks (April 22)

20 weeks (April 22)


Using hydrocortisone cream on Khloë’s eczema wasn’t having any effect so I stopped using it and purchased some Aveeno Baby Eczema Care Moisturizing Cream and Aveeno Baby Eczema Body Wash. After a weeks’ use, the skin on her arms and legs have improved! No more red, flaky patches! Her back is still covered in red patches and her right temple and forehead break out in eczema patches that don’t seem to want to clear up.

I found her toy rings in the back of the armchair in the living room. We thought we’d lost them on our way home from Kingston. She was happy to have them back; Khloë constantly chews on them and loves when I dangle them over her. Definitely one of her favourite toys at the moment.

We went to Prenatal Nutrition this week and made lentil soup. The public health nurse was there to speak about breastfeeding. All the girls except one are currently nursing. As long as we are breastfeeding our baby, we can continue to attend until baby is one year old!

“Make the Connection” was fun but half-way through Khloë got fussy and tired due to missing her afternoon nap.


Cheeseburger

Wearing her new dress

Wearing her new dress

Pretty purple headband

We switched Khloë to size 3 diapers. Walmart had a great sale so hubby and I stocked up on a couple more boxes of that size. Right now she’s fitting into 6-12 month pants, 6 month onesies, 6-12 month dresses, and 6-12 month shirts. A few pairs of 3-6 month pants and all the sweaters still fit.

Khloë: 4 months old (19 weeks)

My growing girl’s latest photo:


19 weeks (April 15)

19 weeks (April 15)


Khloë had her four month needles on April 15th. Just like last time, she got upset after the second jab and was difficult to calm down, but she didn’t choke while nursing this time. A friend suggested breastfeeding her during the needles but that doesn’t seem to help her discomfort. Dr K also put in a consult for Khloë to see a pediatrician in Ottawa because she’s still concerned about her neck muscles not being strong enough for her age.

Due to the time of her doctor’s appointment, we missed another session of “Make the Connection”. But we did get out to Prenatal Nutrition this week. All the girls have had their babies!


035_2014_04_18_9999_22

This weekend was Khloë’s first Easter! We didn’t do much as she really has no idea what it means right now. We spent the Saturday at Ryan & Stacey’s. Jordan helped his friend build a play structure in their backyard while Khloë and I hung out with Stacey and the girls. On Easter Sunday we got Baby Girl dressed up and took some photos, then went to church. Sunday evening we had potluck dinner with a group of friends from church. It was an enjoyable weekend.

This week Khloë also had her first real giggle! I kept blowing raspberries on her stomach and she thought it was hilarious. 😀


034_2014_04_18_9999_5

036_2014_04_20_9999_30

Happy Easter!

Eek my baby will be five months old in couple weeks!