Charlie had a pretty good night but then an awful day. He has been on edge all day and can't seem to settle down. Even the bum pats are not a guarantee anymore. The only change we have made is take him off erythromyacin (yesterday) but he is still having a lot of gas and regular bowel movements so I'm not convinced that is it. The update on the venting g-tube is that the part was ordered over a week ago and delivered but was returned by mistake because the person who recieved it didn't know that we were still waiting for it. So it has been re-ordered and Dr. Jackson should be back on Monday so we are hoping to start progressing again. 
Visit from John and Amanda
Kelli giving the night-time meds- hopefully to help him relax
11 comments:
I am so sorry he had such a hard day. I wonder if he was just worried about going home and decided to throw a few extra twists into your lives. I am sorry they keep losing all his equipment, first the coclear implant and now this. Maybe the "U" will have one... Love you guys.
I hope he has a better day. He has a way of letting all know who is boss and keeping us all on our toes.
you know, all babies have super naughty days. he was just feeling naughty yesterday... hope today he is a little nicer.
I hope Charlie's day is better today.
Just a heads up, for you procrastinators like me.
The deadline to register for the Brain Injury race is May 2. After that date, the cost goes up to $25.00. My Young Women will be there volunteering, all 8 of them. (Yes, that's total in our ward!)
I hope today was a better day for Charlie. Even though I hate to read about bad days, the good are outnumbering the bad at this point, so that makes me happy.
I'm sorry Ang. I hope that Charlie had a better day today! :)
I hope Charlie had a better day. He is such an angel. I hate to think of him in distress. My prayers are with all of you!
I have 21 grandkids and they have more than one naughty day a week.. especially the older ones.
I wish I could say something inspiring, but alas my brain is not equipped for glib rhetoric. I love you and pray for you and hope that the Lord will be with you constantly. Hey, we all need encouragement. We may not have the special needs of Charlie, but we all get down. The thing about this special little boy, is that he helps the rest of us self-involved, spoiled head cases realize what is really important and allows us to put our petty problems into perspective.
Thanks Charlie, Angel, Britty, Rob, Cheryl, Kathy and Grandpa Barlow and the rest of you, for helping me and mine put our lives into perspective and realize the reall purpose of life
Jill B
Good night Charlie!!
Much love and so many prayers.
Rox
Hey Angel,
Farrah here. I found your blog through Amanda's and have been silently lurking for a few weeks, and thinking about you and your family very, very often in the meantime. It's gotten to the point where I feel weird reading the blog, but not letting you know that I'm reading it....Anyway, I know we haven't stayed in touch since school, but I wanted to tell you that I'm so impressed and humbled by how amazingly you and Rob are handling everything that you've been going through with Charlie. He is an incredibly beautiful little boy and I feel like my heart is going to burst for him when I see the pictures you guys post. Sending lots of love and prayers your way!!
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