Friday, January 25, 2013

Life with Spinal Muscular Atrophy

 A mother's first instinct is to feed her baby, but when he doesn't eat and refuses, its incredibly heartbreaking.

 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.
 There are so many choices we have to make. Sometimes I feel its damned if I do, and damned if I don't. We are trying to learn to find more time for ourselves and each other, as every min. of every day  we have been focusing on this little man.  For now, its eating, its surviving, its celebrating as much as we can. We love to play.

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.
I gave Bryce my phone for a distraction last week but due to water damage,  I had to replace the phone; so sorry everyone who has tried to reach me. I didn't have time to figure out how to transfer my number over.

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.

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