Tuesday, August 26, 2008

Starting From Today

I have put off starting to blog because I don't know how to start! Do I start with Peanut's history? Do I start with a recap of our family? Or do I just start? So here I am, starting with today. I'm sure that history will be recapped as I blog, but I am going to stop worrying about that and just type.

Peanut is tube-fed 100%. She can eat, functionally she is able to chew and swallow. But she won't. She refuses. She will spit food out, turn her head, refuse to open her mouth. If you manage to get in a bite that she didn't want, she will gag on it until she chokes it up. Fun! She has been going to feeding therapy at the children's hospital, but it's not making any progress so we are taking a 6 month hiatus.

Enter mommy guilt. "What if I keep taking her, and she suddenly starts eating next month?" Arg. I had someone ask me about hyperbaric oxygen treatment today. No, we have not tried it for Peanut. It is EXPENSIVE. Insurance does not cover it. And I cannot find enough supporting evidence that it works for kids with Cerebral Palsy.

Which brings us to Peanut's latest diagnosis. For lack of anything else, she is officially diagnosed with Spastic Diplegia Cerebral Palsy of Unknown Etiology. Funny that it's spastic, because MOST of her is hypotonic (low tone). As in, the opposite of spastic. Her ankles, however, are high tone. It's important that we find high tone somewhere because that is a qualifying diagnosis for her therapy and insurance purposes. It's complicated and makes no sense, but she luckily has the high tone in her ankles so it works. Overall, she is so loose and floppy. She can sit up, and crawl. She can walk like a mad woman in her gait trainer. But she cannot stand unsupported. She has AFO's (ankle braces), and is getting knee braces (to prevent hyperextension). She is SO loose, her hips and knees pop in and out of socket. She actually likes that feeling, and does it on purpose. Ick, I know! Between her popping her knee in and out (click click click) she grinds her teeth. Constantly. It's called bruxism technically, and it is SO annoying! She gets a lot of sensory input from it, evidently.

The kids go back to school a week from tomorrow. Peanut is starting kindergarten! She has been in school since she turns three, but it's big that she's a KINDERGARTENER! :) Monkey is going into third grade. It makes me feel old to have a kid that old.

I better go get dinner made. Daddy will be home soon. Peanut has a nurse here today, so I went and got my nails done and did the last back to school shopping. I better go do SOMETHING to prove I didn't laze around all day. :)


Tamara said...

Hi there, saw that you signed my guest book, thank you! Welcome to the blogging world. It has been very theraputic for me (I know I spelt that wrong) and has introduced me to some pretty wonderful women! Boy your little peanut sounds a lot like my little lamkins! I would love to know more about you and where you are at in CA (I used to live there and "might" again in the near future). Do you have photos of your little ones? Please feel free to e-mail me at hislittlelambs@msn.com if you'd like to talk more. Hope to chat soon? Take care and just so you know I felt like I was reading my own words on your last post! Tamara

~ Keara said...

Glad to see you posting entries! You know me as amys2peanuts. I'll bookmark your blog and keep checking back.