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