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.
October 2019: Part 1
5 years ago