Saturday, April 6, 2013

Spring is Here!!

This is one of my favorite seasons. I just love the fresh feeling all around. I love going for walks with Bryce. There is so much more positive energy when the sun is shining. 

Anyways, Easter has come. What joy, what fun!! Love our friends! Thanks dad for coming to visit us. Shaun, Lori, Easton and Emerson too. Bryce enjoyed playing with you and coloring the Eggs.

Easter Sunday we were blessed to be surrounded by such supportive friends - we all had a blast watching all the boys run around and play. They showed their eggs to Bryce, he kinda just looked at them and tried to eat the plastic ones; in any case, the little ones seemed to be helpful and interactive with our little man

Winston Churchill has a great quote that I find appropriate for the struggles of Bryce's weight: "When you are going through hell, never, never, never give up.  I haven't given up. I am actually very proud as a result because finally I see the light - I see and can now embrace the positive aspects of recent endeavors.

Bryce is currently 16.5 lbs. Yes, he has lost weight again. He lost almost a pound since Passover. I can't believe the struggles of getting him to gain weight -   We are becoming more confident in what to do and how to deal with weight loss and his gastro-distress. Our PCP is so kind and patient with us as we seem to always call for help and advice.  They also have been helping me coordinate his care with the developmental pediatrician and dieticians.
What I have learned most recently, no matter what dieticians suggest, its a trial and error.  I am not always clear on the details, but we still are counting his oz of pediasure each day, counting his calories, and trying to provide 2 meals per day with olive oil.   .

The other issue we have been facing, is Bryce has had to wait two months before we can put food into his g-tube, so in May, this will I hope make a huge difference for us and for him.

There are many considerations for the future including when to use a cough machine, biPap, etc.  I am considering traveling to either Wisconsin or Boston for more opinions from SMA experts.





1 comment:

  1. Thanks for the update, glad you enjoyed a great Easter with family! Love to all of you.