Hey everyone !
This last month has been so busy, we made the move from Fort Saskatchewan and settled in Grande Prairie Nov 13th. Poor Ava ended up in an arm cast Oct 28. That was extremely unfortunate.. she didn’t have a big fall. Her pediatrician Dr chatur did blood work which showed her calcium and vitamin D were low, which can happen with her condition – digeorges. We adjusted her medications. The cast limited her with things her occupational therapist would have liked to work on with fine motors with both hands, but we adapted and did the best we could. The cast came off Nov 25 and she did very well. She was so happy to have a full/normal bath again.
We had a follow up with her surgeon and he was very happy with how things have healed. Her rectum is stretching and growing while her body grows- which is amazing. The worry was whether or not the scar tissue would be elastic with her growth- thankfully it has shown so far 🙏🏼.
Dr chatur will be her main pediatrician in Edmonton at the Stollery. She referred us to a pediatrician in Grande Prairie to monitor her there inbetween appts and with any concerns. He deals with complex children and will work together with Dr chatur. We are in the process of getting speech pathologist and occupational therapy in grande prairie. She is enrolled in the early intervention program there as well, like we were in Fort Saskatchewan.
We have decided that we will try to put Ava in a Daycare part time. Her pediatricians have recommended regarding to enhance development and communication. All child care options have pros and cons- day care can bring risk catching colds/ flu’s more. This is something we will attempt and monitor. Ava will qualify for an Aid at daycare to work with her, which will be a significant advantage to her health and communication. She is still nonverbal, using sign language to communicate. We have made a lot of progress with her speech in beginning to initialize sounds, just no words yet.
We finally got into a program called FSCD- Family services for Children with Disabilities. This has been a long wait. We had our first appointment of getting a case worker for Ava and building a contract for the needs she requires. Basically this program gives Ava funding and services that will help her. This service will help pay for her aid, speech and OT, that we have been paying out of pocket for. It will also help us with an equipment or tools she may need and when she starts school.
We are finally all settled in our new house in Grande Prairie. Ava loves her new room, play room, and Christmas tree. I had began work at the hospital and Landon will be commuting back to Fort sask till the end of the year while we own that shop till the transfer over to Grande Prairie. We thank everyone for the help and support with our move, and settling in. It is stressful starting with new specialists here for Ava , but excited to start a new chapter and adventure for her. She has grown so much in the last few months. We are blessed to have such a strong, courageous little girl.