I just found out today that our story will be published in the National Newsletter for the March of Dimes. I am so excited for our family that we are able to share our story and hopefully reach out to one family and help them. I am also going to be volunteering at Helen Devos Children's Hospital in their NICU as a parent to parent and with that I am hoping to reach parents like me that spend days with their babies willing them to live and to get healthy so that they can come home.
I am so excited about these opportunites that have become a part of my life. It has helped me in dealing with the death of Sofia and Grady and has given me the opportunity to give back to other families in what could be one of the most desperate times of their lives.
Thursday, March 24, 2011
Monday, March 21, 2011
Progress
It has been a year since my last post and I find it hard to believe that all that time has gone by. Levi has made so much progress and yet there is still progress to be made. He is 19 months old and walking. He has such a charming personality. He has had several surgeries, tonsils and adnoids removed, tubes put into both ears and we are waiting to find out if he will have one more surgery to remove a hernia. Since having his tonsils and adnoids removed he was also able to come off his oxygen which that was 3 months ago.
As I look back on the progress that has been made I am amazed how strong one little baby can be. I am sure there would have been plenty of times that we as adults would have wanted to give up but Levi just kept on going and fighting.
Levi still struggles with eating. He is still being fed through his g-tube but he wants so badly to eat. However, everytime he is fed he gags and wreches and therefore associates that with eating so he will not take anything by mouth. He is in feeding therpy and has made progress and we continue to work very hard but until we can get the gagging and wreching to stop he will continue to avoid eating. I am bound and determind to get to the bottom of this and to get him eating like any other normal child.
Together Levi and I make a great team and together we will continue to teach eachother and make progress together.
As I look back on the progress that has been made I am amazed how strong one little baby can be. I am sure there would have been plenty of times that we as adults would have wanted to give up but Levi just kept on going and fighting.
Levi still struggles with eating. He is still being fed through his g-tube but he wants so badly to eat. However, everytime he is fed he gags and wreches and therefore associates that with eating so he will not take anything by mouth. He is in feeding therpy and has made progress and we continue to work very hard but until we can get the gagging and wreching to stop he will continue to avoid eating. I am bound and determind to get to the bottom of this and to get him eating like any other normal child.
Together Levi and I make a great team and together we will continue to teach eachother and make progress together.
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