Wednesday, June 4, 2014

Surgery Date

Will's PEG surgery is scheduled for next Thursday.  He has been on a medical grade food supplement  for about 5 days and has gained a half pound!  I am so proud of him.  His solid food intake is basically, well, limited.  He may have one or two goldfish crackers or half a pack of fruit snacks in a day.  It's going to be difficult to see him with the feeding tube.. it will be a harsh reminder of this terrible disease.  If it can help him though become stronger then we are all for it.  My poor sweet boy.  My mom and sister will be here to help.  They are my support system.  Without them I am not sure what I would do.  

We met with the occupational therapist yesterday.  She gave Will a series of tests to check his developmental skills.  I am happy to say that he is above average on most skills.  However, she is very concerned about his hypotonic and weak state.  His hands and upper body were trembling.  I think it was partly because he was nervous.  He still can't properly throw or kick a ball.  He just doesn't have the strength.  He had fun though trying!  We meet with the physical therapist next week.   He is such a happy boy and I am so happy to be his momma!  I love him with all my heart and more.  

Will and Lauren (3 months)


  1. They look so cute together!! Can't wait to see you all next week! Love, Mom

  2. Thanks for the update. I think of you and your family often. Many prayers for all of you. Please let me know if you need anything.

  3. Hi Kasey - this picture of the kiddos is adorable! Thank you so much for sharing. I will continue to pray for him, especially on Thursday. Can't wait to see you all soon. Sending so much love your way.

  4. Our Will has seen tremendous progress with PT and OT. It takes a lot if hard work and patience :)

    I would guess the feeding tube will help him have more energy to achieve more. Warm wishes, Lori