Last Indy Appointment

On Thursday, Hope and I made our last trek to St. Vincent in Indy. It's kind of sad--we have been very happy with the care we have gotten at St. Vincent (with the exception of Dr. Doom-and-Gloom, whom we never saw again), and would recommend it over other places in a heartbeat. I have also gotten to know the St. Vincent campus pretty well, so I'll have to work at learning the ropes of a new place out in New Jersey. We're thankful, though--thankful that Hope is healthy enough to move, thankful that David has a job he's looking forward to in the fall, and thankful for modern medicine.

Hope and I west up to see a pediatric neurologist, Dr. Pappas. David and I had met with Dr. Pappas in the hospital after Hope was born, but all he was able to tell us at that time was that he had no idea how Hope was going to do. He said that seizures and cerebral palsy were likely, but only time would tell. His game plan was to watch her developmental milestones to see what was going on with her brain. He said 3 months would be the earliest he'd like to see her to asses how she was doing. So when we went on Thursday, he went through a checklist of milestones, asked tons of questions, and examined her pretty thoroughly. His end conclusion? She's doing great!

She is not, however, 100% normal. For those of you who do not see her every week at church (and maybe even some of you guys who never see her outside of the Moby wrap :), she does not have the muscle control that she should. She cannot lift her head, and when I hold her upright, she will only try to balance her head for seconds at a time. She does not play with her hands, and does not reach for toys. She will not support her body weight on her legs like a normal newborn will do. When I talked to Dr. Pappas about this, he said that she has something called "poor tone." He said that it is to be expected with an encephalocele baby, and he glanced over it pretty quickly, like I should know what that is. I had no idea what it was, but I have been figuring it out since then. Between google and a friend at church who has three adopted children with this problem, I feel like I've learned a fair amount in the last few days. Poor tone is a neurological problem. It is not simply a case of weak muscles, where work-outs (or in this case, therapy) would help them grow stronger. Something in her brain has made it so that her muscles do not work the way they should. There are varying degrees of this problem, everything from slight clumsiness to paralysis. So for Hope, it explains why her eyes cross a lot, why she has reflux, why she's not holding her head up at all, and why we have given her the nickname "Floppy." The good news? It's not nearly as bad as it could be. She does track with her eyes, even though they cross a lot. She will focus on your face, and she smiles. She does move her arms and legs, but when she relaxes them, they feel like noodles. The other good news is that therapy can help this significantly. Lord willing, she will learn to sit up and walk just like other kids, but it will probably take her longer. This is something that she will have to deal with throughout the course of her life, probably in lots of ways that we can't foresee right now.

In everything else, Dr. Pappas was very happy. He said that she is doing much better than he would have anticipated. From here, we just wait and see what happens next--get her evaluated at 6 months and see if we know any more about how she's going to do.

Whatever happens, things will not change around here (in one sense,anyway:). The big kids love her to pieces. The biggest ones sit and talk to her, waving her arms around, laughing at her funny hair, and giving her kisses. Rose runs up to her in the morning and says, "Ope! Ope!" She was given to our family, and we are already overwhelmed by how much we have learned by having her with us. She will continue to cause us to grow in compassion and love, and we will continue to love her and care for her in the best way that we know. We love you, Hope!