Post by my4boys on Jun 8, 2009 6:03:25 GMT -5
hi everyone! I think I havent been "here" in atleast a year!!! CRAZY!!! Life seems to just get busy and time flies by!!!
Anyway, I wanted to give an update on Lily!
Lily just had her 5th (can you believe it??) birthday in March! She is not a "baby" any more! She will be starting kindergarten in the fall! She also just made the training team at her gym for gymnastics! She is thriving!
As far as medically, she does continue to have issues. Many of you know, we almost lost her in the summer of 07 due to complications after her surgery. THAT surgery left her with severe apnea. This past December she had surgery to correct this problem, and it was unsuccessful.
This Wednesday she will be going to the VPI clinic at Cincinnnati Childrens for the first time. Apparently, her speech is being affected worse than I had thought, and her breathing is getting worse. Her geneticist feels like possibly some things have been overlooked. She will have another scope done, and I am not sure what else. The dr is concerned that while she is in need of more surgery, that not "everything" is being taken care of, and if they dont figure it all out, she will have to keep going back in. We are hoping to just go in for one more surgery and be done with it all. The "plan" is to have this done before school starts in the fall, but I am not sure if we will make that time line or not! We have a pretty full summer with family vacation and some other things, so we will see!
our big news is that Sticklers syndrome has been completely ruled out, with Lily-we were initially told that they wouldnt rule that out until she was a teenager! So we are thrilled with that news!!! The bad news is that the Pharyngeal flap that was placed has caused the breathing issues that they have. Ugh!!!
Overall, I still consider Lily to be my "miracle baby"! I consider ALL of our babies to be just that!!!
I am enjoying reading all of your updates!!!
Blessings~
Wendy
Anyway, I wanted to give an update on Lily!
Lily just had her 5th (can you believe it??) birthday in March! She is not a "baby" any more! She will be starting kindergarten in the fall! She also just made the training team at her gym for gymnastics! She is thriving!
As far as medically, she does continue to have issues. Many of you know, we almost lost her in the summer of 07 due to complications after her surgery. THAT surgery left her with severe apnea. This past December she had surgery to correct this problem, and it was unsuccessful.
This Wednesday she will be going to the VPI clinic at Cincinnnati Childrens for the first time. Apparently, her speech is being affected worse than I had thought, and her breathing is getting worse. Her geneticist feels like possibly some things have been overlooked. She will have another scope done, and I am not sure what else. The dr is concerned that while she is in need of more surgery, that not "everything" is being taken care of, and if they dont figure it all out, she will have to keep going back in. We are hoping to just go in for one more surgery and be done with it all. The "plan" is to have this done before school starts in the fall, but I am not sure if we will make that time line or not! We have a pretty full summer with family vacation and some other things, so we will see!
our big news is that Sticklers syndrome has been completely ruled out, with Lily-we were initially told that they wouldnt rule that out until she was a teenager! So we are thrilled with that news!!! The bad news is that the Pharyngeal flap that was placed has caused the breathing issues that they have. Ugh!!!
Overall, I still consider Lily to be my "miracle baby"! I consider ALL of our babies to be just that!!!
I am enjoying reading all of your updates!!!
Blessings~
Wendy
