Saturday, June 15, 2013

Life Is What it Is

I am so sad  - a local SMA-type 1 family lost their baby girl to this unfair and cruel disease. I worry about  breathing and eating issues since we have been home from the hospital (end of April).

I am grateful for my friends and for Bryce being able to move his arms and legs like he does..  He is really good and waving hello and bye bye now. I love my baby boy so much.

Thank you all my friend and those from MOPS for helping me out the past couple of weeks. Thanks Kara, for staying over to feed Bryce so I could rest. Love all you guys so much for your support. Not many people seem to understand sleep deprivation. I think perhaps navy guys and I connect pretty well because the time on a boat is like half of what I have had to deal with in the past month and a half.  

Bryce eats by mouth now for fun, I work on it everyday.  He eats mainly by feeding tube now. Our life had changed so much with Bryce not eating by mouth. Its a shock, but its part of his illness and I will continue to care and love him all the same. I will keep offering food, licks and play time with different food; teaching others to help care for him also is a huge part of my job.

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