Opening of a new window....I hope

Lilly's doctors appointment went good with Dr. Jermey. She is in the 25% for her height and the lower 3% for her weight (17.98 pounds). She is now done with her shots (besides flu) until school! This will make her very happy and hopefully enjoy going to the doctors again. Jermey does not think that it is wise to break her of the bottle just yet as all we can get her to eat is rice and noodles. He told me that he would rather see a few cavities then having to put the G-tube in again. She was also placed back on Prevacid temporarily to help with the discomfort along with a topical cream to keep out infections. I hope that it will work!

My fight with the insurance company failed twice. They will not pay for the 1.5 cal Pediasure now that she is off the G-tube. I, along with both Dr. Jermey and Dr. Julie Dietz have pleaded with them but it was unsuccessful. I now worry that as our stock dwindles, so will her weight. As long as she is not loosing we will be able to keep her from having the G-tube again.

Because Lilly's G-tube site is still leaking, I was able to speak with a adult GI surgeon in the Chippewa Falls area that may be able to at least do a consult and save a trip to Marshfield. I will know more this week if he is willing to do it or not. Dr. Jermey thinks that if we fight hard enough we may be able to get a anesthesiologist that is qualified to sedate Lilly if Dr. McDougall is willing to do the stitches too. I know it is a shot in the dark to ask this of a adult surgeon because Lilly is still a high risk patient.

The kids' birthday party was great! They got tons of things from the family and I think had more fun just having everyone here. I will post pictures soon. Thanks for checking in and please say a prayer for our friend 4 year old Carla Wright, she was placed onto the donor list for a heart today. Pray for a heart and the strength in herself and her family to make it through this continued HLHS fight for life.