What an amazing Sunday we had today…..Vinny has been working on getting The amazing Dr. Schroth to come to our area to speak to families since last April. Dr. Schroth happened to be attending a conference at Columbia Hospital in NYC this weekend and arranged to come to our home on Sunday…..(How cool is she) when we heard this we immediately wanted other local families to benefit from her awesomeness and opened our home up to whomever was interested, we were so happy and honored to have the Vandeloos (baby Ciara), the Nelson’s ( superstar Mary) and …the Casares’…(baby Diana) come over for a meet and greet with Dr. Schroth!!!! Sophia was super excited to see her favorite Dr. but absolutely lit up when her BFF Mary Nelson came over, Mary brought over her very cool IPad and was so sweet and nice enough to show Sophia how to use it!!! (uh oh daddy now you better go get one ) Dr. Schroth is so generous and gracious to have done this for us and the families here, we could never thank her enough!!!!! It really is an amazing feeling I get whenever I am among other SMA families, I feel like we all have this quiet understanding of each other….
Now about our Sophia, as some of you may know in the last few months Sophia has become weaker and Bi-Pap dependent, it was quite shocking to us since it seemed to happen overnight, we have been trying different things to see if maybe she could get stronger, but Dr. Schroth confirmed upon seeing her that she cannot breath on her own anymore, that it is just the disease, and Sophia being a weak Type One would benefit from being Trached if we so choose. Vinny and I have always been on the same page about our care for Sophia, we have always known that if the time came we would follow that path, and Trach Sophia if she needed it, we just never knew it would happen so quickly for us, but SMA tends to throw surprises your way……..Our life with SMA has been so different than other families I have followed and gotten to know, what I have learned is that every childs experience is different and you may do everything the Dr.’s and RT’s and therapists say but it may not work out the way you want it to…..I always knew Sophia was weaker than other children we see, she was just dealt a different hand. So our journey has led us here and we want the best for our Sophia, we plan to seek out the best Dr. and facility for the surgery to be performed!!!! Please keep Sophia and our family in your prayers although we are ready to take on the Trach, it is a difficult decision and transition for us but we will take it one day at a time!!!!!