Hi everyone my son Christopher will be turning 7 months on the 17th of May. I have been having a couple of concerns and all I hear from the doctors is "we need to see how he develops" so I wonder if any other parents have gone through these few issuses. 1 vision: Christopher does not focus at me or objects he seems to always try to look upwards, I did take him to the eye dr and he said he doesn't have any eye disease and to let him develop. 2 Sleep: Christopher still sleeps like a newborn he is… Continue

Sometimes I feel like we will never get to go home. She is almost three months old and doesnt know her home. Just when we think we are getting closer we hit another roadblock. I know there are people in worse situations than I am, I'm just having one of those days.

I just wanted to let everyone know that we have had some success in treating Jay's seizures. He's been having them for a couple of years now and we've been seeing his neurologist quite regularly. We originally started seeing him because of the drops Jay was having during the day. He would be sitting there and then suddenly lose all muscle control for just a second and then get it back. He got to the point of having 15-20 of these drops a day. The neurologist put him on Zonisamide and that… Continue

Today Berkley had her first heart surgery, but second surgery in her life. They went in through her leg in order to try to close the PDA, but unfortunately it was too big and couldn't be done. So they will do a different surgery next week sometime to try to fix it. Pretty bummed about it because we were hoping to be able to be discharged a couple of weeks afterward. This just adds another week to our stay and another week of intubation. On the bright side- her pulmonary hypertension has… Continue