Mamie's feet

Mamie is doing pretty good. Wade accidentally pulled her feeding tube out on Friday (not as big of a deal as it sounds) and we decided to just leave it out till we went to the doctor on Monday. They said she had gained enough and it sounds like she's been eating enough so they decided to let her keep it out.

We went to the orthopedic yesterday and got some bad news. Her right foot is clubbed and the left one has a bone that is vertical instead of horizontal. Another doctor had told us that the funny shape of her feet was probably just due to weird positioning in the womb and the fact that she wasn't able to move them. Well, I was expecting that she would have to have casting or something sometime, I just wasn't expecting it to be as soon or as dramatic. The dr.said we could start the casting as soon as right then! for the right foot but the left was something he needed to find out more about. We'll have to come in weekly to have the cast changed. I was really hoping we were cutting down on these doc appointments :-( Just when we have the last of the plastic surgery appointments for awhile, along comes this. Also, he said after that they will have to attach her feet together with a bar to kind of train them in the right position. Full time for a couple years I think and then part time for a few more. I was not expecting that much at all. I just wish my baby could have a chance to be a regular little baby without all these extra things on her. We are going to get a second opinion about the feet though.

I posted a whole bunch of pictures here on my blog so make sure to check them out.

The latest

Today we had an all day appointment at the spina bifida clinic. We met with urology, physical therapy, Dr. Merkens-the main spina bifida doc and a social worker. Plastics also briefly came to do a quick touch up on her back. They put silver nitrate on the granulation tissue, it only takes a minute. Then we met with a "medicaid specialist" although I don't know how she can call herself such. Dr. Merkens gave us a new feeding routine to try. He said we can do all her tube feedings as bottle feedings first and then whatever she doesn't finish, just give through the tube. I tried to feed her her midnight feeding but she didn't want to wake up so I just gave it all through the tube.

I had a seizure last Thursday, as if we didn't have enough to handle! I had taken Mamie out for her 6 AM changing and feeding. She was on the changing table when I collapsed into a seizure. I have always been more prone to have them right after I wake up (although I haven't had one for 5 years) so for now on Robin is going to carry her to the changing table and put her back at that feeding.

Mamie is such a little sweetheart. She is getting more and more responsive and we're just sure she's gonna give us a big smile any day now. She laughed in her sleep the other night-it was really funny-she is quite a noisy sleeper, making all kinds of grunts and other noises.

I am very excited for my parents and my sister and her family to come this weekend for Mamie's baby blessing. It will be great to see them and show off my little Mamie.