Monday, February 21, 2011
In case you aren't on facebook and haven't seen the most AMAZING friend make the kindest gesture in growing a beard and having it sponsored with all proceeds being donated to the Epilepsy Foundation of Northeastern NY.. I give to you a link. To behold the beards. And the kindness and compassion. And the awareness. Bob Buckley, a friend of mine from "the good ol days" is kindly donating his face and facial hair and TIME to our cause, and raising much needed funds for the EFNENY. I really can't accurately get out how touched, honored, grateful I am for him doing this. He made a video to promote the last week of Bearduary and I balled thru it. To have someone, totally outside of our situation, take the time and energy and devote it to our cause, our mission of fighting epilepsy and supporting our local epilepsy foundation... I can't even explain what that means to me. I wish I could put in to words what my heart wants to say but it isn't enough. Bob has always been the sweetest, kindest most amazing soul I've ever known. Someday I hope to find the words.. and to thank him (and his wife for supporting the beard too!) and to all of those who donated, THANK YOU! I just can't say thank you enough.
Now to my wee one. I NEVER find myself questioning surgery,or anything that has happened since then. We have made steady, consistent gains and progress since we left the hospital. With the exception of the triple shunt revision frenzy this fall, she has not regressed hardly at all. Except for one thing. EATING. I would be lying (and lord knows I will always tell you all the truth..because, that's what blogging is for!) if I didn't catch myself complaining about it lately. I'm not complaining about surgery.. it's just that she has consistently and steadily lost her interest in eating, particularly with self feeding, tolerating oral stim, taking food off a spoon etc. I was looking back thru pics and I found pictures where she was feeding herself with a spoon, she was holding and eating her teether feeder, a bitter cookie. I don't get it. I don't understand why THAT of all the things that could've regressed that was the one. And now I'm stuck. I have an almost 3 year old getting ready to go off to program that doesn't eat. It's SOOOOO frustrating seeing those pictures. I think a lot of it aversion from being in the hospital. I can't figure why she would just not want to eat anymore. We are going to Kennedy Krieger in March for an intensive feeding eval and I know they will be able to help. They are top of their game. I expect to leave there with better methods than what we came in with. It's just so damn frustrating because everything else is going great. It's all wonderful.. Just the oral stim/eating piece of it. Sigh. I know it will be ok. I just don't know what to do anymore. I guess we'll find out when we get there.