5.8.19 Catch Up

Hello friends! We are still here, but well overdue for a post about Aimee. I keep waiting to come up above the surface for a breath before posting, but that moment seems to be elusive and in demand. So, here we are in the midst of our chaos. There is still peace here. There is much beauty. Yet, no denial, this road is not easy or even clear at times. Difficult decisions are being made and overwhelming crises must be diffused. 

Aimee has continued to make her usual rounds through the specialists. She has had more growth rod expansions and more discussion about the next steps for her spine. There is a possibility of another surgery being needed for a spine fusion in 2020. She had her first go at botox in her biceps recently. Her elbows have become more and more contracted. There is also spasticity there and we are hoping that the botox will weaken the muscles just enough to allow her to extend her arms for using communication devices. We are in a long struggle to get those devices (iPad, switches, and apps) covered through the DDA funds that she has available. We are hopeful that she will have success with these when they do finally arrive as it seems that she is interested in communicating, during her good days at least. 

This has been a tough Spring of respiratory sicknesses. With the help of a very capaple nurse, we have managed to keep Aimee home so far. There would have been no way through the last one that we could have managed on our own. Unfortunately, we are in the midst of big changes in our nursing care and Aimee is sick again! At this point, we will not have any nursing for the next couple of weeks and then we will transition to completely new nurses. Praying that the right nurses for our situation become available. 

Our family has spent the past 11 months building a new home on our property. Ed has been marvelous. He designed and drew up plans for a practical, economical house that he has then built himself. It has been an incredible journey that we are still in the thick of traveling, but we are beginning to see a glimpse of land on the horizon ahead of us. It is such an amazing project, just the right place for our family grow. I love it and honestly have loved the process. Each nook that is built and wire that is strung is an exciting possibility for the future. How sweet the journey (says the one who mostly just takes pictures and acts as cheerleader ;) ). We are really looking forward to having a thought-out bedroom for Aimee with a bathroom setup to care for her well. We plan to move into our new home in the late summer or early fall. 

In other news, we are building a new family member too. ;) Baby #5 is anticipated at the end of August. The boys have prayed and prayed for a little sister.

Aside from the recent illnesses, Aimee has been able to go on more adventures lately. With the help of a wonderful nurse, I took the kids on an aquarium trip. As a family we got to go see an amazing production of Mary Poppins, which Aimee delighted in for the full 3 hours! She particularly enjoyed the stageful of chimney sweeps tap dancing.