Tuesday, June 30, 2009

Today at Children's Hospital

Emily had another botox follow-up appointment today at Children's Hospital. Our last several appointments have been a bit traumatic for Emily and she's getting to an age now where she understands what's going on and what's going to be happening.

Last week I started giving her a heads-up that she was going to be meeting with Dr. B. I simply told her that we were going to visit her again and that she wouldn't be getting any shots this time and then I carried on a dialogue from there and answered any questions she had as we talked.

This weekend I mentioned it one or two more times and then yesterday, I started telling her every step of what was going to happen at this visit.... Emily would be staying at my mom's in the morning and then I would pick Emily and Grandma (Nanny) up after Emily's nap and take them for a long drive to visit the doctor. We would play for a little bit until they called her name and probably our friend, Renee, would take us back and weigh her and measure her. It wasn't going to hurt and it was just like getting weighed at home and she would be measured just like Em's buddy, Miranda, measured her height the other day. After that, we'd go sit in our special room where we could read books, play, and color until Dr. B. came in. We'd probably take our shoes off while we were waiting (because Dr. B likes to feel her feet and ankles without her shoes on and Emily REALLY prefers to keep her shoes on) and Dr. B could help put her shoes back on before it was time to leave. I would talk with Dr. B for a bit and then if Emily was really nice during her visit and let the doctors and nurses do everything they needed to do that we would go for ice cream afterwards.

Today, I'm praising God that with lots of prayers and preparation everything went as planned!

Emily marched back when we were called and walked straight into the first room and right over to the scale. As soon as Renee said she had the numbers, she told Em she didn't need to get her height today. Em walked out of the room like the confident little girl that she is and walked right into her exam room and proceeded to help me dig her books and crayons out of our bag. The nurses came and went and all of our shoes came off as we played in the room barefoot. A new doctor came into the room, admired Em's drawings and played with her a bit before asking some questions and then she very smoothly played with Emily on the exam table and tested her range of motion in her ankles and legs while I distracted her with "This Little Piggie Went To Market". So far, Em's scored an A+ for cooperation during her exam!

After a few minutes Dr. A left the room to confer with Dr. B. (Seriously, those are their initials -- convenient, huh?!?) They both came back into the room a little while later and Dr. B graciously eased her way onto the scene. Emily continued to play the part of the perfect patient and cooperated with all of their requests!

Overview of the adult conversations:
1) The botox injections only seemed to work for the first couple of weeks after they were given and then Emily went through at least one growth spurt that really limited the end results.
2) Emily still has extremely high muscle tone in both legs, but especially the left.
3) Emily doesn't mind doing activities in PT and at home to work on mild stretches of the muscles, but she really doesn't like us to hold onto her legs, knees or ankles to help stretch them.
4) Emily's stance and gait (the way she walks) has started to change more over the past year because she's grown and she's finding other way to do what she needs to do. She walks on tiptoes ALL the time unless we remind her to "walk with flat feet". She stands with her feet farther apart than normal and her knees are starting to turn inward. (This is typical of kids with cerebral palsy.)
5) It appears that Em's physical therapist and Dr's A & B are now finally all in agreement that it's time to put Em in braces to help train her legs/knees/feet into the right positions.
6) We took home prescriptions for three different braces... yeah, I know, she's only got two legs, right?!?! I don't know all the details yet but will know more after we see our physical therapist at our next appointment. My understanding at the moment is that there is a brace for the right leg, a different kind of brace for her left leg (because it's tighter and needs a different type of correction) and another type of brace for her to wear on her left leg at bedtime.
7) The benefit of having a prescription for the braces is that we can work with our therapist's team to have the braces made and tweaked... right in Marion... in the same building where we have therapy instead of having to drive back and forth to Columbus for that.

Our next appointment with Dr. B is 8 weeks from now and it's a follow-up to see how the braces are working. A couple of weeks after that, we'll have another botox appointment and then three weeks after that we'll have another botox follow-up appointment like we did today.

Hopefully the end results at that time are better and Emily will have another A+/Ice Cream Reward appointment!

Oh, and by the way, Emily DID earn her ice cream today and she chose to get ice cream at Bob Evans on our way home. (Yeah, I know that comes as a big surprise to some of you!) Yes, it was supper time and yes, she had ice cream -- and a few bites of blueberry bread, applesauce and some milk -- for supper. But ice cream was her main course! Hey, I promised. I couldn't help that her appointment was over at supper time!

Thanks for the continued prayers and be blessed!

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