Sunday, May 29, 2011

Slow and steady

Well, things are still the same. Toby goes in daily for his cyclosporin infusion and his PCV always come out the same, 28%. We are cutting back on one of his meds, we'll see if that makes any difference. It is nice that at least he is stable, but it's also a very slooooowwwww work in progress to get a PCV above 30%.

We've asked ourselves how long we think Toby wants to keep going in for cyclosporin infusions and having a catheter in his arm. We don't know that answer. He is tired a lot of the time, but he is still super curious. I take him on short walks half way around the block and he always wants to go longer. He walks slowly, but he still wants to go. We try to take him and Meg for long rides in the stroller whenever possible, just so he can get out and see things. After his cataract surgery just over a year ago Toby has a great appreciation for being able to see things, so his stroller rides are even more special.

The only real change is that Toby's brain is somehow missing the connection to the rest of his body telling him when he needs to have a bowel movement. Hence, he sometimes has a BM without even knowing it. He's had a rectal exam by both internists and physically he's fine. It's not a side effect of any of the medications he is on, so they're thinking it's a mental thing, perhaps just due to age. Or perhaps since he has IMHA and is prone to blood clots, maybe he had a minor clot and the part of his brain that tells him "Oh, I have to poop, I should do outside", doesn't work anymore. So sometimes he poops as he's walking, or even sleeping, without even knowing it. It's unfortunate to see, but I don't think Toby cares much. And there are worse things in the world than having to pick up poop.

Tomorrow is Memorial Day, and Monday. John and I are both working so the kids will probably end up staying at the hospital with me all day. They would much rather be at home, but at least this way I can keep a close eye on them.

Thanks to everyone for the get well wishes, and the orders for biscuits and biscotti. We hope to be making more this week!

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