One year ago today Brooke and I made our routine visit to the University of Utah for her Stop SMA clinical trial visit. We had been sending weekly weights to the dietician and trying so hard to get Brooke to eat and gain weight. Every single ounce was a small victory because they were so hard to come by. After months of trying to get her to eat and gain weight, the decision was made while we were in Utah that it was crucial that Brooke have a feeding tube for survival. FAILURE TO SURVIVE. That was the technical term on all the paperwork that always hit me like a ton of bricks making me feel like an inadequate mother who couldn’t feed her child. It was our choice to have the surgery in Utah. We wanted to have the team that knew Brooke and who have followed her since she was 3 months old be there for her surgery and recovery. It one of the hardest things I’ve had to go through… watching her be taken down the hallway for surgery, giving her that last kiss before she entered the surgery room and the wait for them to call me and let me know it was over and how she is recovering. I knew that she was in good hands, she had the best surgeon and we were surrounded by our usual SMA clinical trial team and Dr. Swoboda was right there for everything! I mean, seriously, everything. My words cannot express how much respect and gratitude I have for her. She was comforting, always there when I needed her, answered every question I had, spent time with us every single day after surgery, talked with each nurse that we encountered, figured every single kind of dosing, made phone calls, called in favors, etc. It was just what I needed during such an emotional time. Looking back it is still a very emotional thing for me but I look across the room at Brooke crawling and pulling to stand and it puts a smile on my face and makes everything worthwhile. Having the gastronomy tube and nissen fundoplication surgery was the best move we made and Brooke is thriving and doing SO well, she’s gained weight, started eating by mouth again and asking for food telling me she’s hungry! It’s like music to my ears!
At the same time… one year ago… the Friends of Brielle & Brooke Organization and Facebook Fan Page were formed by friends and family. The Friends of Brielle and Brooke Organization put on two big fundraisers to help our family with the intention to cover the costs of a wheelchair conversion for our van. We were able to have the van converted last August (2010) and it has made our life so much easier transporting wheelchairs, gait trainers, and a mobile stander. We are so grateful to our family and friends for all the wonderful support you have given us!
The best part is that we are so fortunate to have a surplus! That extra money has gone to:
- Brooke’s electric wheelchair – our portion of the medical costs.
- 24 Hippotherapy sessions
- We are using up the remainder of the funds to buy Brooke a mobile Standing Dani!!
We thrilled to have these life changing pieces of equipment for our girls and we would like to thank everyone who was involved. This summer will be lots of fun exploring the outdoors and I envision Brielle and Brooke playing “tag” in their mobile standers and lots of giggles and belly laughs as they experience something they have never been able to do before but only dreamed about.
Thank you from the bottom of my heart for all of your support over the past year.