We care about you Harper yes we do, and here are all the ways we show you. We share your story on a plane. We share your story on a train. We share you here and there and everywhere. We share your joy and we share your pain, in the sun and in the rain. So share with us in telling everyone. Because, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
Share until the whole world hears http://youtu.be/o7qi2KlUffs
Harper is doing phenomenally better since our return home last Friday. Her NG tube is out and she is successfully eating from a bottle with our new pigeon nipple of course! The seizures are finally settling back into a pattern now that we are feeding on a schedule. It is extremely difficult for me to see where Harper’s physical abilities are today knowing where they were three months ago. http://youtu.be/Fi2gJZ2Dgsw
A simple diet change left her debilitated and it breaks my heart. Although Harper’s body is weak her mind is not and for that we are blessed. http://youtu.be/Vm0R9RIGDHs The most frustrating thing about the situation is that I feel abandoned by the ones who aided in creating this problem. However, while we were at Medical City PICU last week, we reached out to Dr Nickels with the MN Mayo Clinic. Today we were told Dr Nickels is able to fit Harper in for a March 20th appointment even though they are booked solid until June!
We picked up Harper’s wheelchair last Friday! It’s a perfect fit! We are very excited about the cute chair! It will enable her to sit properly without so much effort allowing her to focus her learning on more than simply sitting. Although I am excited for Harper and her cute new chair, I have this overwhelming unfamiliar emotion I’m not sure what to name. Before when we parked in handicap I unloaded what appeared to be a normally developing child into a stroller. Now there is no question as I hoist this chair from the rear end of our vehicle about whether or not we actually need to be using the handicap spot. Don’t misunderstand: I am in no way ashamed or embarrassed by Harper! For the first time ever the world will know that Harper is different with no discussion about her organization and it’s purpose. Others will see our family in a new way without words being spoken and I’m not exactly sure I was ready for that.