Alex and Maddy

Alex and Maddy

Monday, October 6, 2008

There is a light at the end of the tunnel...We should be heading home a week from today. There are 2 possibiliti​es. One is that things will go exactly as planned and we will continue to progress and go home on J tube feeds with no need for TPN. The other is that we will not be able to concentrate teh formula from half strength to three quarter strength. In that case we will need to stay on some TPN along with our feeds. We have come farther with our feeds then we ever thought possible so we are happy.

We are going to do one more GI test before we leave to test for bacterial overgrowth. Other then that the plan is tho increase feeds to 70 cc/hour tomorrow. Then on Thursday we will go to 62.5%. On Saturday we will go to 75%. And discharge on monday. If we get out early in the dya we will head home. If it is late afternoon then we will spend one night and head home Tuesday morning.

We need to be back here the week of November 10th. We have to see Dr. Koenig, 2 GI doctors and do a sleep study. Then depending on how Dr. Koenig feels and how Alex's belly and blood counts are doing we are going to try and not come back until February.

In the meantime, Alex and I are going on a fun excursion! My Dad offered to take us to Orlando for a long weekend to see our beloved Pirates play and to go to Sea World. We are really excited. We will see Aunt JennJenn, Uncle Jimmy, SkyeSkye, Grandpa, and maybe Mimi and PopPop. Alex is hysterical because he is more excited about the football game then seaworld.

I have to say thank you to everyone who has sent cards and gifts. You have no idea how much they mean. To our playgroup: you guys made our day. Thank you for being such good, loyal friends. We cannot wait for next Wednesday to see you guys. We miss you so much.

I leave you with a quote I found...God didn't promise days without pain, laughter without sorrow, sun without rain, but he did promise strength for the day, comfort for the tears, and light for the way.

Ali

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