Well, we made it back to Chicago and home again!
Reilly thoroughly enjoyed her first plane ride. It is so awesome to see the wonder in a child's face as they learn things. Apparently her brother informed her they serve pretzels on the plane and that was all she was after. She liked watching the planes landing and taking off Friday afternoon when we were waiting for our flight. I was really proud of her being a good traveler. She likes to check out the bathroom anywhere you go. So of course, I found out that you can fit a small child and an adult in the bathroom on the plane without either one of you having to stand on the toilet, but only just barely. I went in with her because the door lock - which activates the light in the bathroom - was far too high for her to reach. Indeed an experience, that we had more than once!
Dr. Superina thinks that Reilly is doing very well, her incision looks great (just ask her, she'll show you). She has two little spots where the suture is visible, but they will eventually go away. Before the man could get fully into the room, Reilly said, "So, I want to go swim at Meme and Granddaddy's house in their big pool and I want to go to the beach with my Mommy, is it okay to do that yet?" And he said..."Let me check you out first!" And then he said..."YES!" She was so excited, that was the first thing she told her Daddy on the phone. She still cannot climb and there are other activity restrictions, but swimming is definitely ok (no jumping in the pool though).
We will have the results of the ultrasound on Tuesday and her ammonia levels from her blood work. Because everything was so close together, the radiologist had not yet read the ultrasound before her clinic appointment. The good news is, if you are an ultrasound tech, and you are not sure where the shunt is, or how to find it, I can tell you, show you, recognize it on the screen, well, actually, I could just do it for you! I guess that is what you get for paying attention. Because the shunt is deeper in her abdomen, it is a little difficult to find and if you are not sure what you are looking for, it is easy to miss.
Anyway, we will return to Chicago in 6 weeks for the 3 month follow up. This time, we will visit the new hospital (Children's Memorial Hospital is moving from Lincoln Park to downtown and changing its name to Lurie Children's Hospital) and it is, by all accounts, a state of the art facility. We will be there for longer this time as all appointments could not be scheduled on the same day.
Her INR (clotting time) is right on track and there is no change in her Coumadin dose. YAY! She will continue with blood work to monitor those levels here at home, like before. Also, her H+H is low, but seems to be coming up and this is also monitored very closely.
Bad News ... no weight gain. It's amazing to me that such a small person can consume SO many groceries and not gain weight. The child eats consistently all day long. Sounds easy right, gain 2 pounds...apparently not. So, we are working on that. Otherwise, things look good.
Good News ... Reilly feels good. She looks a bit healthier, getting some color in her skin, and she feels like the Rockstar she is. THAT is important. The fact that she does not feel different from other children, but recognizes that she does have some limitations (well, we as her parents are the limitors, left to her own devices she would probably be skydiving right now), and they don't bother her (yet, I know this will come), those things make this whole situation easier. God has seen us through this far, and I know, he will guide us through it all.
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