Highs and Lows

Jake slept a little better last night and got a solid five hours, only problem it was between 5:30 -11:30 pm. :-)   He only got another 2 1/2 the rest of the night until 7:00 am. We kept him up until 8:00 tonight and as of now, he's sleeping and we're hoping for a good night. It reminds me of when we were trying to get him to sleep through the night as a baby and kept slowly shifting things a little bit later each night.

When I got to the hospital this afternoon, Jake was really tired and pretty emotional. He had already gone through three sessions of therapy, with only a one hour nap.  He kept alternating between telling me how much he loved me and giving me hugs (which I loved) and saying "I just want to be a normal kid" … "normal kids don't have tubes coming out of their nose" … "I can't even walk" … "I want to go home and sleep in my own bed."  He goes through these periods of time where he just gets overwhelmed with everything and becomes very emotional. It's completely heartbreaking watching/hearing his raw emotions just pour out.  Because of where he is in his healing, you can't rationalize with him or say anything that makes him feel better. Very tough time to be a parent...

About half an hour later and after he had calmed down, Jake got a very special visit from his 4th grade teacher. She is moving out of state tomorrow and I knew how much seeing her would mean to him. She had been on maternity leave since early May and Jake had really missed her being at school. They had a really nice visit and he got a bit annoyed that I was doing more talking than feeding him the ice cream she'd brought, so he took the spoon from me and fed himself. For a long time after she left, he talked about her coming to see him and the angel her mom had painted for him. We are really going to miss her. While she was here, Jake made a special point to tell her to thank her mom for making him the angel.  What a sweetheart he is.

They also started giving him some high calorie liquid drinks today to start working towards getting enough calories orally so that the feeding tube can be removed. That will be another wonderful milestone, and can’t happen soon enough.

Specific Prayer Requests:

1. Continued progress in Jake's ability to sleep
2. Success with the liquid calories so we can take out the feeding tube
3. Peace and strength for Jake