What a Rollercoaster Ride

Happy Halloween!!! What a beautiful fall day for trick or treating. Too bad we won't get to enjoy it outside. Instead of trying to find a safe place in the Kansas City area to go get some yummy candy we are probably going to hit up a mall to see what we can find there. Yesterday Caleb didn't want anything to do with his dragon costume, but this morning was different. He wanted to put his costume on when he saw it again. That didn't last more than 1 minute after I got it on him. Hopefully we'll be able to get it on him tonight when we go find a mall. We've had the little squirt with us since Tuesday now and I think it's been that long since the last posted on our blog. Of course there is no correlation. He's been keeping us busy and of course happy too. There are lots of toys here at the Ronald McDonald House for him to play with.

Hannah is going. That's what I tell people when they ask. She'll more than likely be off all of her drips tonight while being fed "hard" medicine by mouth. She'll be on two medications now since she doesn't want it any other way. They tried to take her off all of her medications and breathing tube for second time earlier this week, but didn't respond well again. Luckily they were watching her more closely this time and they were able to take care of it sooner than later. We should be out of the PICU tomorrow if everything goes as planned and be one step closer to coming home.

The opthamologist stopped by Hannah's room on Wednesday to give her an eye exam. Hannah had a previous one with a doctor in Topeka, but we didn't like how Hannah was treated by her. We weren't given much hope for her eyes and basically the doctor said that there wasn't anything that she could do for her. So we did what any rational parent would do, we got a second opinion and the outcome of the exam was the same unfortunately. Coloboma in both eyes effecting both the retina and the optic nerve. I was reading up on coloboma after the news again and it said that in "rare" cases the optic nerve will be affected. Once again our little princess had to go out of her way to be the rare case or the exception, and that's the story of her precious little life. What does this mean for Hannah? She will have limited vision in both of her eyes, but there is still a possibility that she will have some. We don't know to what extent her vision will be effected until she is about 3 years of age, essentially we won't know how good her vision is until she can tell us what she can or can't see. What was different with this doctor? Dr. Hug laid out a plan for Hannah and what she would do with her to help her work with the vision that she does have, something that the other doctor didn't do with us. Dr. Hug had already requested that an eye specialist be assigned to Hannah and work with her as she grows. She also has several future visits lined up to follow Hannah over the next couple of years. I think we are going to like this doctor. All in all Dr. Hug's bed side manners were very good. Not once did she tell me that Hannah was blind like the other doctor did several times.

What a roller coaster ride it's been with our princess. We are looking forward to be going home with her soon, but it's far from over. There are still many more things that the doctors need to do to help Hannah function properly. We learned of something new today. Her respiratory rate has been fast since the operation and the doctors had been telling us that she just needed time to recover. Today I asked another doctor what it meant for Hannah's breathing to be fast still and he told us that her left side of the heart might not be functioning properly. It's part of her congenital heart failure that she was born with. New news to us, and I wonder how long ago they determined that because we've asked several times before and didn't hear that. So where does this leave us? With a bunch of more questions. What more does Hannah need done to her? Is there any correcting this? The list goes on and on but we probably won't have anything answered until next week when we get to talk to a cardiologist again.

And in the midst of all of this going on Caleb can't wait to see baby sister again. He can only go into the lobby of the hospital because of the flu season. That's been difficult for all of us. Every time we take him over to the hospital to drop someone off or to change who gets to play with Hannah he remembers that baby sister is there. He'll just start saying "baby, baby" and all we can do is show him pictures right now. Hopefully his reunion with his baby sis will be soon.

We appreciate everything that people have done for us and all of the prayers that have been given to our family.

Ricky