Sadbh slept great last night, and not stir until 5. Katie went down to feed her and Sadbh immediately fell asleep afterwards.
When Katie switched the Oximeter sensor from one foot to the other, Sadbh woke up and gestured the baby sign for “baby”. Once Katie picked her up, she gave Katie a huge grin, and dropped back to sleep.
She understands and can sign for almost 20 different things, and this is certainly making life a lot easier. It’s really fun to be able to communicate with her.
Obviously, the most popular one is food.
Sadbh slept until 7am, and the timing was perfect since she had a 9:30 appointment with her speech therapist Caryn at Children’s.
On our way to the appointment, we met up with her physical therapist Robyn, and she was extremely impressed with Sadbh’s development over the past few months. She could not believe that Sadbh is no longer using the wedge when she sleeps, and that we no longer swaddle her.
Speech therapy went great. We started off by using the non-modified Passy Muir Valve, and with the help of Caryn’s distractions, Sadbh was able to tolerate the PMV for 8 minutes. She made some gagging sounds throughout, and this was attributed to her managing her secretions through her mouth, which she is unaccustomed to since her secretions are typically managed through her trach.
We were shocked, and seriously impressed by how calm and happy she was.
Almost a year ago, as I followed Sadbh's ambulance to Children's Hospital, I could not help notice all the pinwheels that lined the lawns and streets on the hospital campus. It was the beginning of what seemed like a trip to the land of Oz.
The pinwheels are planted throughout the hospital grounds to raise awareness that April is National Child Abuse Prevention Month.
Su Jin was working today from 4pm to 10, and since we were in the hospital this morning without a chance to manage trach care, both she and Nini took care of business during Sadbh’s evening nap.
Nini took care of cleaning this time, and even though she was extremely nervous, she did great.
Larissa is on shift again tonight, and took over from Su Jin at 10pm. This allowed Katie and myself to get out for a few hours to see a show.
For the longest while, we had nothing but bad luck with our nurse care, and we had to fight hard to get the current team of nurses looking after Sadbh.
Even though we often do not have 100% coverage, we are so lucky to have a fantastic team of great nurses on board now.
Katie and I spent quite some time tonight looking over photos of Sadbh over the last year, and it’s incredible how far she has come. She is one seriously strong girl, and we know she still has a lot more to prove.
All the best,
Wayne, Katie and Sadbh.
No comments:
Post a Comment