Doing Big Things

The trach collar trials are doing wonderful things for Sophia and openings up more possibilities for her to grow. She is already up to an hour twice a day and doing great. She transitions from vent to trach collar without notice. I just know she will be off this vent in no time... I hope and pray it. Do the same. We still have to hold tight with the two hour mark until we see the doctor again. I am hoping for radical changes then. With the trach collar Sophia is able to get on her tummy with comfort. The trach collar is still attached to the machine for now for humidity but it only has one hose and it is softer and more flexible. She has been getting on her tummy during these times and even holds her head up like a champ. We've been working with her everyday on head control and she makes subtle improvements daily. Tummy time is huge for us. With all the restrictions and surgeries before, she was never able to have it. She is still adjusting to it but she is doing it! First Steps is coming out today for her first therapy session. They are going to be so impressed with what we've been learning already. Did I mention, that Sophia turned 5 months this weekend. 5 whole months and so much to talk about and so much has been done in her little life. 5 months and she is just now growing out of her 3 months clothing. My little tiny tot! She is wonderful. Sophia's hearing and vision screens have all been pushed back until July. They wanted to wait until she was a little older for the tests. I am so anxious for the results. My husband and I were talking the other night about Sophia and the fact that so much of her and who she will be is still such a mystery. We never really know how her syndrome is truly going to affect her until we are living in that moment. Some times it is still hard for us to think of the future and all the what ifs but with everything she has been showing and doing so far I just have to keep the hope she will surprise us for the future. I am not naive that there will be things that are different /special but I think it is a mother's job to hope. To hope for the best. To allow for the best. John role has daddy is supporter and he does that well, for both of us. He grounds me when my head starts spinning and assures me that no matter the reality, we've got each other and that is okay. When everything is all said and done...it will always be us and we will always be okay.