I cannot believe we are halfway done with this journey here in Baltimore! I do feel like we are making some gains here and I am thankful God placed Kennedy Krieger Institute in our life. First of all, I only wish we could have started this a few years ago because when I am on the CMV mommies page on Facebook, I see what other kids with her same symptoms and diagnoses can do versus what Super K has not yet accomplished. "But Wendy, you shouldn't make comparisons!" Yet all parents do. Some days I think maybe I have let her down by not being pushier about her therapy, but then again this has been uncharted territory every single minute of her life. No two CMV kids are alike in their ailments because each brain is affected differently.
Once again I am so thankful we are at Our Children's House. It is a nice walk to and from therapy and the weather has been pretty amazing. When we got here it was Texas hot and then it cooled off really low, only to level off to really nice. Kaydence is not a fan of the city noises as we walk. She has spent a few days screaming her new banshee scream as we head down the road. It is lovely.
At therapy I really don't see much because I'm not invited, but I get a little report each day. We met at the beginning of the week to go over her goals while she is here. They were similar to her goals in weekly therapy, and I'll be honest, I felt they were a little watered down. I explained how much she really can do that they can't see because she has been an angry elf and somewhat limited there. Once I talked about how she climbed the outside of our staircase, the therapist said, "Well maybe we need to push her a little more." I laughed so hard because that is the understatement of the year with Kaydence Grace. Um, we need to push her a lot more! The take away from therapy this week is that she is making some gains using a communication app on the iPad. I do believe this is the most important task at hand. We need some communication skills. I mean, we get her at the house - until she starts throwing fits - but everyone else needs to be able to understand her too. Each day, when I talk to God, I tell Him that I really want her to walk, talk, and eat on her own, but honestly I think the talking would be the best answered prayer. Even if it isn't traditional talking, just any way to tell us when she feels bad or hurts would be great. God has heard me go back and forth on the benefits of all of the areas I pray about, ha ha.
The other thing we need to work on here is SLEEP. This child does not understand how to sleep all night long. She wakes up anywhere from 4-5:30 each morning, which is okay here, but at home that would be 3-4:30. Neither Nana nor Momma can handle that. We like our sleep. And when we get home, she will be up and wake up Wade with all of her racket. A more positive point is that she will at least fall asleep here and has done pretty well traveling for her. When we've traveled before, she likes to party all night long, so this has been better.
I'm hopeful for a great week ahead of us!
Once again I am so thankful we are at Our Children's House. It is a nice walk to and from therapy and the weather has been pretty amazing. When we got here it was Texas hot and then it cooled off really low, only to level off to really nice. Kaydence is not a fan of the city noises as we walk. She has spent a few days screaming her new banshee scream as we head down the road. It is lovely.
At therapy I really don't see much because I'm not invited, but I get a little report each day. We met at the beginning of the week to go over her goals while she is here. They were similar to her goals in weekly therapy, and I'll be honest, I felt they were a little watered down. I explained how much she really can do that they can't see because she has been an angry elf and somewhat limited there. Once I talked about how she climbed the outside of our staircase, the therapist said, "Well maybe we need to push her a little more." I laughed so hard because that is the understatement of the year with Kaydence Grace. Um, we need to push her a lot more! The take away from therapy this week is that she is making some gains using a communication app on the iPad. I do believe this is the most important task at hand. We need some communication skills. I mean, we get her at the house - until she starts throwing fits - but everyone else needs to be able to understand her too. Each day, when I talk to God, I tell Him that I really want her to walk, talk, and eat on her own, but honestly I think the talking would be the best answered prayer. Even if it isn't traditional talking, just any way to tell us when she feels bad or hurts would be great. God has heard me go back and forth on the benefits of all of the areas I pray about, ha ha.
The other thing we need to work on here is SLEEP. This child does not understand how to sleep all night long. She wakes up anywhere from 4-5:30 each morning, which is okay here, but at home that would be 3-4:30. Neither Nana nor Momma can handle that. We like our sleep. And when we get home, she will be up and wake up Wade with all of her racket. A more positive point is that she will at least fall asleep here and has done pretty well traveling for her. When we've traveled before, she likes to party all night long, so this has been better.
I'm hopeful for a great week ahead of us!
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