December 28, 2011

Mediport is out!! All went well. Still concerned about the non weight gain but working on it with the feeds. Still have the g tube for awhile. He had a long talk with Dr. Small today. She is great! He is worried about his weight but she gave him a huge pep talk.

Through one of the support websites, I connected with a family and they had a daughter Cody's age going through the same thing. She is the same age as Cody and actually did the graduation with him too but they did not really know each other. Anyway they connected on facebook and finally met today. She is from NJ, orginally from Israel and is a beautiful girl. She does not walk so well and is in a wheelchair. Maybe they will keep in touch. Sweet!

Home and he is sore. He also got some shots, DPT, one for meningitis and a inactive polio one. We did it while he was still groggy but he felt it. He feels beat up tonight.

Started his feeds early and guess what-they changed to g tube and it is leaking. We did a little test at home but nothing helped so we are going back in tomorrow to have them look at it. Not happy and he is very anxious about the change and not be under anesthesia. It is not painful but he had a really BAD experience. Since it was changed today, and all went well it should be fine!

We are not eating or drinking after 12 just in case they need to do it with anesthesia.

Cody's cousin's were there today too.

Long three years and glad we are moving ahead.