First off, we would like to thank everyone for their kind words, emails, cards, prayers, and thoughts. It’s so nice to have so much support for Sophie and know that we have so many wonderful people in our lives to travel this journey with us.
Since our last update, we had the opportunity to meet with numerous specialists across different disciplines that helped us to learn more about Sophie’s condition and the different ways that it can be treated. We have found the palliative care team through the local Children’s Hospital to be the best fit for us as they answered all of our questions and align with the treatment ideas we have so far. The problem with SMA is that there is no cure or ‘great’ option for treatment. With that said, we were relieved to learn that the palliative care team can keep Sophie relatively comfortable throughout her life. The team has set up for a nurse to come to our home once a week to check on Sophie, and as her condition progresses, the nurses (Lynda and Miriam whom are wonderful) will come as needed.
Right now, Sophie is doing quite well. She is smiling more than ever, cooing, and becoming even more aware of her surroundings. She is such a sweetheart and makes people smile everywhere she goes. Since Sophie cannot move as much as a normal baby, we find that she likes us to keep her on the move by walking and rocking. She also loves to have her muscles and joints gently stretched and massaged. We are prepared that Sophie will likely start to show some of the affects of her condition in the coming months, but right now, we are enjoying every second with her and are trying to give her as many experiences as possible.
Nonnie (a.k.a. Grandma Fortuna) has moved in for the summer. This has helped us tremendously as we now have an extra set of hands, and more importantly, lots more love for Sophie. We have spent our days taking numerous walks, visiting with friends and family, grilling out, checking out various Chicago hotspots and watching Baby Einstein.
We will continue to pass along updates as Sophie’s condition progresses, and stay tuned for more pictures along the way.
Liz, Mike & Sophie