Saturday, September 29, 2012

Celebrating Life - Day by Day

My motto this week has been  "HOPE. A friend gave me great advice, "sadness must not prevail in my heart,  I must stay strong."  My goal this week is to learn to live each day entirely for what it is and to stay strong not just for my son and husband but for me as well. Right now, its too overwhelming to be nothing but hopeful. We will hope, pray, and enjoy our little miracle for as long as possible.

Yesterday, our neurologist at Shriner's Children's Hospital  said Bryce is strong for his condition: he touches his toes,  bear more weight on his legs, and is moving his head side to side on his tummy. His tongue movements are also normal at this time and he can still brings his hands to his center and hit two toys together. These are all good  fine motor skill development.

We are so thankful to all of our families and friends for support. The beginning of this journey is learning to understand and accept the diagnosis of SMA type 1.  We are very appreciative and grateful for all the gifts, food, the visits, the kind ears listening to our stories. Bry Bry is at home with us. He is a fighter; he is doing well and is extremely amazing and happy. We have come to terms to acknowledge all of his greatness as well as the areas of his body that the muscular atrophy has begun. The cough assist machine arrives this week and we will wait and see how this helps him. We hope he recovers from his cold soon and that his lungs still continue to develop for some time, and that he continues to eat more food and gain weight on his new diet before we consider the feeding tube as the next step.

We now know this can be short or long term and we must continue to live our life to the fullest - go to the zoo, play games, and be the best parents we can be. Bryce is so brilliant that he is learning to point to eyes and noses; he just can't sit up by himself or hold his neck up for so long. He easily tires after an outing but  never complains. He just enjoys everything that life presents.
My tears are becoming happier tears because I now have hope. This is partially due to the fact that Steve and I no longer feel  alone, we have so much love from people.  We have met a team of specialists at Shriners, and families of SMA have also reached out to help and provide resources to guide us through the next stages.  Early intervention has been a saving grace; first and foremost they have been inspiring and are rebuilding my confidence as a mom.  They have been coming into our home and assisting me with learning new physical therapy movements, eating positions, and documenting  Bryce's  progress.  My developmental pediatrician is an amazing specialist who I respect very much for not only helping us navigate through the medical field but also reaching out to us on a personal level especially during this adjustment period. 

We are completely exhausted, but we are going strong and learning everyday new ways to take care of our son.

Thank you so very much to everyone who has helped us during these days especially.  

We need all the support we can get right now. Families of SMA sent us a packet and we will be setting up a way to raise funds for the care of Bryce.

 Much Love  Jenni and Steve


1 comment:

  1. You are one strong mama Jenni! If you need anything please let me know. Love to you all!