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.

SMA: Neuromuscular clinic (July 9)

Khloë’s first Neuromuscular Clinic appointment was July 9th. Clinic only runs on Wednesdays, every other week. Unfortunately, our visit was not as successful as we had hoped it would be. Most of the specialists were great, but one doctor kind of ruined the day for us.

On Tuesday, July 8th we met with Khloë’s pediatrician, Dr I. That appointment went fine as it was just a follow-up on how we were dealing with our daughter’s diagnosis. Dr I asked if she can continue to follow Khloë’s progress; we agreed to this request.

That same day we saw the surgeon who would be performing the G-tube surgery. Dr B was extremely hard to understand and I felt that there was a language barrier. I’m sure he’s a great doctor, but I didn’t feel comfortable with the consult. He doesn’t want to do the surgery while Khloë can still eat orally, but that contradicts what her neurologist said. Dr M originally told us that getting the G-tube proactively, before she is sick and has developed breathing problems, would be better for her, especially in regards to recovery. I think these two doctors need to have a discussion. Jordan and I want Khloë to have the surgery by the fall, at least.

On Wednesday, July 9th we walked back over to the hospital for our first visit to the Neuromuscular Clinic. It turned out to be a long, exhausting day. Khloë was very tired as she was up at 6:30 that morning; she refused to nap before the appointment and then as soon as we arrived I could tell she wanted to sleep. She needed a lot of attention to keep her from being really miserable, so it was hard for me to really concentrate on what the specialists were saying. I felt rushed and overwhelmed.

First we met Kellie, the dietician, who told us to start Khloë on one food at a time to check for allergies. I explained to her that we already give her mixed cereal and various fruits and veggies all within the same days and she hasn’t had any reactions. I’m not going to change the way we feed her because there are no food allergies in our families. I asked her to find out more information about dairy products, as I’ve read that SMA kids have a hard time digesting the fat molecules in dairy because it takes too much of their body’s energy.

The Occupational Therapist was still trying to find us a bath seat. She also found a neat portable pool (it’s tall and deep) which includes a flotation device that keeps the child’s head above water. She’s hoping to get funding to cover that item. The pool would be beneficial since it would give Khloë the ability to really move her arms and legs–aquatherapy!

The physiotherapist showed us how to do chest therapy with percussor cups. We are to do 3 minutes on each lung lobe when she gets a rattle in her chest or when she is ill.

Next up was the respirologist, Dr. K, a few students, and the respiratory technician. I’m not at all fond of the respirologist. He seemed to think us wanting to be proactive with getting Khloë specific equipment early on wasn’t a good idea–we requested a suction machine, CoughAssist, and pulse oximeter. We don’t want to wait until she’s in distress; we want these items as soon as possible so we can be trained on how to use them. He is giving us the suction machine, which the respiratory tech, Carlie, showed us how to use later on. However when I said I wanted the CoughAssist machine (as every single SMA parent has told us to get it ASAP) Dr K said that he only recommends it for children over 5 years old…to which I replied that Khloë may not reach that age. I was getting frustrated by this point. So after he left, Carlie compromised and said she would give us the loaner CoughAssist machine to try out in 2 months time when we go back. Jordan and I have come to the conclusion that we still want it NOW and not in 2 months. I sent an email to Carlie about our decision.

Finally we saw the social worker and explained all our concerns about Dr K. She assured us that if we don’t get what we want, we can always ask for a second opinion because it’s completely our decision about what equipment we want. With the neurologist not being there, we couldn’t go to him. The social worker and our nurse coordinator have been awesome, though!

Khloë: 7 months old (34 weeks)

Baby Girl turned 8 months at the very end of the “week” but I considered her 7 months for the majority of the week. This one was taken at Nan & Papa’s home in New Brunswick with Travel Hello Kitty!


34 weeks (July 29)

34 weeks (July 29)


Her Nan & Papa brought that onesie back from San Fransisco!

Still in New Brunswick visiting with family. There are so many family members who need to meet our little girl. Khloë saw her Uncle Luke again and met Jordan’s oldest sister and her two kids. Her Great-Nan & Great-Papa gave her so much attention! They pray for her every morning and night. She also met Great-Grammy, Jordan’s godparents, two of Jordan’s friends, my co-worker Lori who was posted to Gagetown, and various aunts and uncles.

We had to use the suction machine on July 30th and 31st to clear out Khloë’s junky-sounding lungs. We aren’t sure if we’re doing it right. I was afraid she was getting sick, but so far that’s not the case. She still wakes every two to three hours at night rather than the four to six she would do at home in her crib. Most of the time I think it’s gas pain and wanting comfort, rather than hunger. Due to SMA, she needs to be fed every four to six hours anyway.

Our lucky little girl was spoiled with two 8 month birthday parties, too.

August is Spinal Muscular Atrophy Awareness Month!

Khloë: 7 months old (31 weeks)

A new week:


31 weeks (July 8)

31 weeks (July 8)


Khloë saw her pediatrician Tuesday afternoon. Dr I will keep her file partially open in case we need pediatrician care but we won’t be required to do follow-ups. We also saw Dr B at CHEO, the surgeon, about the G-tube surgery. And finally on Wednesday we had our first Neuromuscular clinic appointment (separate post coming). We had a good experience with some of the specialists, but not so much with the respirologist; he doesn’t seem to agree with our proactive approach to Khloë’s respiratory care. SMA is degenerative and she will never be more healthy than she is right now… She will need medical equipment to manage her disease, regardless, so we feel we should get it for her now so that she can be used to the machines before she’s in distress. The OT is still looking for a bath chair for her.


Photo shoot

Beach

We were home in time to unpack, do laundry, and clean up the house for the Harpers to arrive on the weekend. Two year old Hannah just loved meeting Khloë!

Khloë weighed in at 16 lbs but hadn’t grown in length.

We also received an amazing care package from Families of SMA Canada:


FSMA Canada care package

They also sent a Radio Flyer wagon! We are so thankful for this package; Khloë loves the little toys and enjoys being pulled around the house in her new wagon.

Khloë: 7 months old (30 weeks)

Sorry for the late updates! We were away for a week and then had company over my birthday weekend. Trying to play catch-up before we head away for 2 and a half weeks!

My girl turned 7 months old in the middle of the “week”:


30 weeks (July 1)

30 weeks (July 1)


Canada Day was not eventful; we did nothing other than a mini photo shoot. Khloë was in bed early and wouldn’t really understand the concept of celebrating Canada at her age.


Canada Day 2014

Canada Day!

On Thursday we packed up the car and drove the 3 and a half hours to my mom’s cottage. We got settled in the guest cabin, set up Khloë’s bed and the camera for the monitor, and then enjoyed the fresh air and beautiful view over the lake. It was so nice to get some relaxation time in and it was just as wonderful to see my mom! Even though most mornings she was awake at 6:30 am, I was pleased with how well Khloë adjusted to being away from home for a longer period of time.

Friday we took Baby Girl to visit my tante and cousins. Khloë had her first ferry ride!


First ferry ride

First ferry ride


And Saturday was the Great Summer Spectacular BBQ for Ashe’s 3rd birthday and Khloë’s 7 month “half” birthday. The cottage was a happenin’ place that day! So many people came out to celebrate with us. I plan on writing a separate post about the birthday bash. We spent the following day winding down from the crazy party and enjoyed hanging out with my brothers and sisters. My brother Mark, who lives in Newfoundland, flew down for a few days with his girlfriend. Khloë has finally met all her uncles!


New sunglasses

To end a great week, on Monday we drove to Ottawa and checked in at Roger’s House (CHEO) for our 3 day stay.