Wednesday, August 20, 2008

Life at home

We are slowly settling into life at home. After a call to GI, we are making some adjustments to Timmy's meds, so that should hopefully take care of the puking. So far so good today.

Also a home health nurse came by to check on us today, and she was very nice. She had done her homework ahead of time and actually knew what a mitochondrial disorder was! She seemed thorough and kind. I am glad to hear that she will come by once a week for the next few weeks.

As always, please pray for wisdom and for no puking or seizures. Please pray for us all as we adjust to this new normal. He is doing so much better than his lowest at the hospital but so much worse than the last time he was home. I think that the change in location points out the behavioral and physical changes all the more. It is just so hard to see him be so weak. I miss him holding up his head and standing and being more interactive. He is smiling and giggling a little bit though, which really does an emotional world of good. I know it is a good day if I yawn and he laughs at me. For some reason he has always thought that yawns are SO funny - especially loud, exaggerated yawns.

1 comment:

Mom/Nana said...

Oh, Lord, thank You for the small victories. Thank You that even in the midst of decline You lift up our eyes to You.

I'm so glad the home health nurse has come and that she is helpful to you, Lara. You can see the changes better than anyone. Pictures do indeed tell a story, as we look at the gallery over the past year.

What meds got changed that helped out? Aunt Diane called yesterday and talked about her experience with feeding tubes and pumps. I know she'd love to talk to you.

And now I'll *YAWN* go back to *YAWN* work... (giggle, Timmy!)