Happy 7 month birthday my buttercup

I never though she would make it, I didn't. I trusted God, but I just didn't think he would let us keep her. He did!

Thank you God!

I really need to improve in the blogging area...

I know it must be frustrating to not get updates. But to be honest we didn't have an update to give until last week. So here goes...

In a nut shell Hollyse's surgeon doesn't know how much more aganglionosis she has. He consulted with three other surgeons who had varying degrees of recommendations. One suggested the watch and see approach, another suggested he re-do the surgery using a different method instead of a pull through, and the last suggested a colostomy bag. Yes, I nearly fell over with the colostomy...you could have knocked me over with a feather. I am so, so grateful we have a surgeon who isn't like what you typically hear surgeons are like, scalpel happy.

He did mention something that really threw me for a loop because he has never said it before. The possibility she has Hirschsprungs through out her small intestines. Because she has this rare skip segment he believes it is possible she could have skip throughout, although unlikely. I think he shared this because she has thrown him for a loop everytime....he thought it was full colonic-but it was short segment...he thought he was being extremely thourough by removing more-biopsy showed nothing healthy. Then the whole skip segment. So, I think he just doesn't trust she is falling inside the normal perimeters of this disease.

Her growth will be monitored as slow growth is one indicator of her small intestines being affected. He also warned us to be diligent in watching for any signs of enterocolitis as that is major concern for at least another six months. But, overall he is very pleased, even with all the lack of answers and strangeness of her medical case.

We will be watching many things in the coming years as he assured us we have a long relationship to come. I knew that but it is hard naturally to not know where she is going to go. But I am thrilled that she is a growing baby who has really been healthy (outside of a major disease).

I really want to get the word out there about this disease. It is so rare and people need to know so that they can react quickly. No child should be lost for lack of response. It really bugs me that every time I type Hirschsprungs it isn't recognized in the spell check.

I will get some more pics up soon. I might even blog about something other than Hirschsprungs;)

Blessings,
Michelle