Friday, January 25, 2013
Life with Spinal Muscular Atrophy
Since the end of November Bryce's weight has been off the growth chart and doctors have been worried.The weekly weight checks have made me nervous, the repetition of professionals' opinions of the terminal condition of my son's life is not useful; rather constructive ideas and suggestions would be much more supportive. Let's GO stem cell researchers - find a cure please.
I feel a bit relieved at the moment that he is now 16.12 and half oz. Thank you home nurses from coming to our house and being supportive!!!
We are grateful for the support we are getting from phone calls, to those stopping by, to our church people, to our neighbors etc. Its been hard for me to stay at home everyday for the past two months.
Its not always easy to do things the most effective way - do I even have an excuse - lack of sleep- constant worry - 24hour care - - when people ask my why don't I put him in the shopping cart/seat, or about my feeding style when we eat in public - do I just say thanks and smile or do I tell him about his rare diagnosis and make them cry.
I love how Bryce has two top teeth that finally came in, now he loves to eat and chomp on things; he loves his sippy cup. Wish he would take his bottle more though.
Thank you Steve for watching Bryce for an hour last week so I could go out. Thank you for letting me sleep in this morning.