Keekaroo-whoo-hoo!

We're still in the hospital and not at all happy about it. The doctors told us five days max and it has now been twice as long. It's not really their fault even though I can't help but blame them. Maisie had to have 24 hours off all medication except for the drugs for myasthenia, seizures, and hemodialysis. That, apparently, wasn't good enough for the nephrologist (this was a new guy, the doctor we usually work with is away) who insisted upon 24 hours without ANY medication. I fought, I argued, I yelled, I tried and tried but he insisted and finally I gave in. She didn't get her evening meds and by two in the morning she was seizing constantly, unable to breathe, and in obvious pain. She was rushed to the PICU and two hours later was stabilizing, thank GOD. I had a private conference with her pediatrician, neurologist, and pulmonologist to make sure I had my facts straight and I wasn't just crazy and terrified before I fought to get her another nephrologist, which thankfully we did. So then she needed a full days in the PICU to recover and get her levels consistent and normal before they let her go back to the regular pediatric ward. Now we'd lost three days, four if you count the fourth day when they took her off just a couple of meds to evaluate her symptoms. Grr!

They finally got her started on treatment on Wednesday and by Thursday her blood and urine tests were coming back even worse. I'm not surprised, I mean, I'm sure all that panic and stress on her body helped her kidneys heal. So they started her on an antibiotic to which she promptly had an allergic reaction. And then they had to wait for her rash to go away before they tried something new, and now we are here, and she's finally giving better blood/urine tests. This has all been so traumatic and confusing for her because she wasn't feeling ill before. The only good thing I can say about this fiasco is that we caught the HUS early so she is doing really well now and we might get out of here tomorrow.

What I really wanted this post to be about is the wonderful, serendipitous thing that Jeff's sister Emily found. Emily lives here in the city and she's been visiting us a lot, which is especially wonderful because I'm not alone all the time while Jeff is at work. I was telling her that we're struggling to find a booster seat/high chair/something that Maisie can sit in at the table. We have been using the combination of a booster-seat and a bathtub headrest, but it is just so not working. When Maisie is exhausted, the seat doesn't hold her up. The seat is uncomfortable on her bony behind and there is just not enough support for her head. So Emily was walking home one day and stopped into a thrift store and there, in the middle of the floor, was a brand-new Keekaroo Height Right Kid's Chair. It was fifteen dollars so she bought it on a whim, brought it to the hospital to show me and we plopped Maisie in it and holy cow.

This.

Thing.

Rocks.

It's very comfortable and very easy to clean. We needed to order the cushion set to the right for her head and the blue "infant insert" on the left fits her beautiful and gives her alignment and padding and support. I AM IN LOVE. Finding adaptive equipment that is not unbelievably pricey is so hard because the market is so small. This thing is amazing, supportive, wonderful.

Keekaroo-whoo-hoo!!!