Doing Well Waiting on the Big Plan

Savannah has thankfully been doing well with the tube feeds in her stomach!! She is up to the full amount of feeds with no stomach bloating. They still have her on the strong stomach antibiotics which they will take her off to see how stomach does then. If it bloats then I am assuming they will put it back on in a hurry. They started her on a soft diet of mashed potatoes today to see how she tolerates that- of course mommy was afraid to give her more than a few bites at each meal. Eventually they will decrease the # of hours they give tube feeds to stimulate hunger to see if she will eat enough on her own where they would only have to tube feed at night or even less during day.

She is still having issues from blood not clotting enough which is coming from her liver not producing enough. The big plan right now is to give her something wed morning to make blood clot long enough to do some cutting. They will do a muscle and skin biopsy for the mito, insert the feeding tube in her stomach, and do liver biopsy to look for the problem there. I am assuming that she will stay in the hospital while they find the liver problem and to make sure she continues to do well with the tube feeds. The therapists told the doctors she would need rehab when she goes home- she so wants to walk and ride the bike but after laying in bed for a month her muscles have gotten so much worse. She cannot even sit up by herself unless supported by the special chair they have her in. Yesterday when she worked with the therapists they sat her up and let go to see what she would do. She literally fell face first where her whole body was laying down kind of sitting on her legs. They got her special chair to sit in and asked her to sit up so she could get in it. She actually pushed up on her arms and hands kind of like a baby does when learning to push themselves up and almost got to the complete sitting but could only hold it for like 5 seconds. She will have a lot of work ahead of her but she is strong and a fighter so she will get through it. We praise God for all the progress she has made so far. He has brought her through many obstacles the past 7 weeks.

The test for the MNGIE mito disorder was negative so that is a good sign although it still leaves us to no answer yet. Her seizures seem to be under control. She is wrapping all the doctors and nurses around her finger which if you know her you know she is excellent at this. She just loves everyone and can make anyone fall in love with her. She is still begging her dad to take her home whenever she sees him. She is up to 41 pounds! She still enjoys all the visitors that come to see her and we thank everyone who comes to see her. We would also like to thank those who have brought her and the family things. We greatly appreciate it and we also thank you for your prayers. Please continue to pray especially during her sedation on wed with the blood clotting problem.