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"Uh oh" and good news about Special K

I'm having a really hard time not worrying about Little T going back on Vincristine. I know we can get through it. We went through it before. But I feel sad when I think about him getting another Broviac, losing his voice, getting weakness in his legs. I don't know why I can't stop thinking about it. It does no good, since there's nothing I can do. And I'll feel silly if he does okay with the steroids.

Yesterday Little T said "Uh" Pause. "oh" when I dropped his bottle. He also said "Bye" to Roberta when she left. For the first time he said two words in one day. He hands out his words like precious gifts. Is that because he spent months unable to use his voice due to Vincristine? Prolly not because he sure says "Gah" all the time. He also says "Ahh!" when he's particularly pleased about something. Like when he got hold of the Tivo remote. He also gave me a big grin.

And I just went and read someone's blog whose baby is in the NICU teetering between CPAP and canula. Little T was on the canula for a day or so. To the doctors' amazement, his cardiovascular system held up even with the strain of supplying blood to a vascular tumor that was literally bigger than his head. I had forgotten about how worried they were in the first days with lots of tests and close monitoring. I guess I wasn't looking back far enough. In some ways, my boy is medically fragile, but in other ways he's incredibly strong.

I should add that Special K seems cheerful again. She's been dry for days. She's rushing about. She's bouncing again.

Her preschool schedules a phone call for every parent at this time. During our phone call, her teacher said that Special K was "smart, sweet, talkative. She finishes her work. She looks out for other kids. She wants to be a leader." After we talked more about that, we learned she's bossy. She also sometimes talks too much, but after she was removed from circle time once, she stopped talking when asked. That's my girl. Though I wouldn't know where she gets it from...

The best thing about the whole call was when I asked "How's Special K doing with her brother being sick off and on?" and her teacher said "I had no idea about her brother." We had written a note about Little T's tumor in the little form about your child you fill out at the beginning of the year, but evidently the teacher didn't read it. I hardly ever see her teachers because Special K likes to stay for lunch and different teachers look after the kids for lunch. Special K is certainly capable of saying her brother is sick, but obviously that's not on her mind when she goes to preschool.

Mostly Special K interacts with her brother by making him laugh, holding his hand, and telling him or us not to pull her hair or not to eat things (yes being bossy).

I'm so grateful Special K is doing well. I feel a bit better now. Thanks for reading.


( 1 note — Leave a note )
Jan. 14th, 2006 03:20 am (UTC)
isn't it the older siblin'g job to be bossy?


# posted by R : 11/17/2005 01:20:30 PM

Reading, and thinking of you every day and praying for little T. I can't know what it's like to be parent to little T, but I can imagine how hard I would find it.
# posted by Plantgirl : 11/17/2005 01:56:38 PM

Me too - that is, I'm reading and thinking of you every day and praying for little T. It's great to hear about Special K. too. :)
# posted by theresa@lizardfoot.com : 11/17/2005 09:01:49 PM

Thanks so much! That means a lot to me.
# posted by Thida : 11/18/2005 03:21:26 PM

I think it's great she takes such good care of her brother, telling him not to pull hair and whatnot. What a special bond they will have (and already do). I'm thinking of you, your family and little T ((hugs)).
# posted by Jeanne : 11/19/2005 09:37:02 PM
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