I don't want to write this. I'm really mad. And I don't want to sound negative. But I'm pissed off. And I'll warn you that there is no hopeful wrap-up at the end of this post.
We met with an amazing feeding specialist at STAR yesterday who is world renowned for her work with kids and their eating issues. She and a team comprised of a pediatrician, an occupational therapist, and a speech therapist watched Henry and me share a meal of soy yogurt, crackers and soy cheese behind a one-way mirror. After that, she came in to watch him up close and then they weighed his tiny little body and wrote up their report.
I'm mad that the news about how my boy eats, is not good news.
The team is incredible and the way Dr. Toomey explained his difficulties to us was just short of messianic. She spent three hours telling me exactly what is going on in his little mouth and why he stuffs it full of food, melts down at meal times, and chokes.
But I'm mad that his tongue doesn't work right. That he can't chew. That he has the feeding skills of a 6-9 month old. That he's anemic. That he seems to be allergic to a bunch of things. And it makes me cry. And it's frustrating. And I hate it.
And I don't want to know that his road is even harder than I knew. And I didn't want to write this. But it's all part of it.
Sally, I'm tearing up right here in the middle of Big Sky. Not because I can say I understand what it's like to walk the road you're walking with your little man, but I know what it's like to love that intensely. You're an amazing mama. That's all I wanted to say.
ReplyDeleteLove you dear friend, and even though I don't even know sweet little HPK well, I love him too.
ReplyDeleteWe find out results for Sera's food allergies this week. So much to think about.
Those are all normal feelings and they some days things will make you want to cry and other days when you wonder why it upset you so much. You were give Henry for a reason, because you were chosen to work a miricle. That may just be getting by but it is so much better then most could even do. Better then I could do. Henry will change you. You are a good person and mom now but he will make you better and he will make his sister ever more understanding of life. See you soon - Karrie
ReplyDeleteOh my. I'm so sorry that it was a hard day and that you did not get good news and that Henry has a hard road ahead. I am even crying a little bit with you. I hope that, in the days to come, you will also gain knowledge that lifts your spirits rather than lowers them.
ReplyDeleteKeep going. I've just found your blog and it sounds like you are doing an amazing job. This is really helping your little boy. Sometimes I write things that like this as well - it helps me.
ReplyDeleteso hard to say the least, Sal. thank you for your honesty. how frustrating. if you weren't mad at all and didn't hate it, that'd probably be kinda weird. love you.
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