Monday, February 25, 2013


Hope - these have been the words over the past few days. I heard the most inspirational story at a gathering of moms on Friday at St. Mathews.  I am grateful for this new group of mamas. So much kindness and support. We all have such beautiful families and precious angels who only bring us joy and love.

 Today is he day that we have been waiting for. Its not the most ideal situation to take. Its is most concerning  to take a child into the hospital for a surgery. One that requires venting a child (machines that breath for them during the placement of the feeding tube in the stomach)The difficult part is that this goes against all natural instincts of a mom. Why do we put a hole in my son's tummy? In the long run they say most children of SMA have a feeding tube eventually.   Bryce is very strong right now. He plays, laughs, moves his arms, legs etc.   We are glad that Bryce still takes 4 bottles a day and eats food too. We hope this trend continues for awhile. and again, I do have hope and I do believe in  my son.  I think this feeding tube will allow us to get the nutrition that he needs to grow stronger and we will hold on to that for as long as we can. Steve and I have to focus on the NOW. We don't really think too much about the future because while its good to be knowledgeable;our focus is on the present moment. The laughs, smiles. and coos.

 I find that either quiet meditation or listening to stories of other parents to be most soothing. There is not anything better than playing with my angel though. His the most absolute perfect little being ever. Bryce teaches us so much everyday with his smiles and good sense of humor.

We are so thankful to our friends who  really are so wonderful and supportive.

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