Attitude

For all her health issues, she is such a typical three-year-old. Meaning, she can go from absolutely delightful to defiant little monster in a heartbeat.

She was throwing beads on the floor, and I asked her – several times – to stop doing that, because Ruthie could eat the beads and get sick. After I changed my tone from patient and understanding to I’ve-had-enough-stop-throwing-beads-on-the-floor- NOW she looked straight at me and dumped the whole cup.

I kept my voice down and my tone serious and said to her “clean these up.” I think she gathered I wasn’t joking, because she sat down to clean. At some point, Lucy walked by and asked “what happened, why are all these beads on the ground?”

Daphne’s answer: “they slipped and fell.” Then, under her breath: “because I dumped them.”

Kidney reality check

We had a pretty good nephro appointment yesterday. I am totally depressed.

Let that sink in.

Daphne is finally eating well better and growing. She continues to be on the very top of the growth velocity curve. She’s even managed to put on some weight. We have let go of the tube discussion. All good things.

Daphne’s kidneys are not getting better. This is no surprise. Her numbers have all gone up progressively. There was a big bump when she was admitted in January for dehydration. Now, she doesn’t have enough kidney function to bounce back, so the numbers stay up.

She’s eating so much better, in fact, that her kidneys are having a hard time processing the different nutrients she is taking in. In particular, her potassium and phosphorus levels are high. Not scary high, but high. We are going to have to tweak her diet a little bit, and I’ve already talked with the dietitian. We have to cut down potassium-rich foods like avocados, bananas, salmon. You know, the backbone of her diet.

We have entered a new stage. We will have to repeat labs in two weeks, and monthly after that. I asked the nephro for his best guess of when the transplant will happen. I threw “within a year”out there, and he said “yes, probably.”

Because he is an amazing human being, he spent a fair amount of time consoling me, explaining that she is still stable, trying to put a positive spin on the unspinnable. Her numbers look bad, but she obviously feels good. We just have to be more careful from now on. As if we had been carefree before.

So there you have it. I wanted a better idea, and now I have it. I don’t like it, but I have it.

She eats

Until not too long ago, the kid gagged when solid food entered her mouth. Or she would chew and spit. Now…. she makes (some of it) disappear.

Overscheduled

I had thought that by three years old, it would have started to get better. The pilgrimage from specialist, to specialist, to lab, to specialist. In some ways, I suppose, that’s true. We’re not at the pediatrician every other week, or even every month anymore. Continue reading

Tired

I am tired. Continue reading

PT Update

Walking Ruthie around the lake.

I just had a conversation with Daphne’s PT, who is working on her upcoming 6-month progress report. Since we get to keep Early Intervention services until the end of August, PT wanted to go over her progress and come up with new goals for the summer.

D has made a lot of progress in the last 6 months. Some of this progress is subtle, like stair management by alternating feet on steps and walking down steps without support. But, in more exciting progress, just in the past week or so, we noticed that the girl can jump! She has been pretending to jump for a while by bending her knees and sort of propelling her legs back up straight, but now she can get both feet off the ground. Super exciting. Also, her endurance has come a long way. This past weekend, we took a walk to the little lake near our house. It was the first time D managed the walk there and back, AND the trail around the lake, which is uneven and hilly, without asking to be picked up. In fact, in the last block on the way home she was galloping and “racing” Lucy.

Speaking of racing, the one goal she has not accomplished is running properly. PT thinks she has some ankle instability that gets in the way of her impulsion.

A while back, PT had requested a physiatry evaluation for this issue. After months of the EI service coordinator ignoring her request, we finally got it done. The Dr. who evaluated her thought she was borderline. In his opinion, she is slightly knock-kneed, and he would put in a recommendation for orthotics with the understanding that he did not think they were absolutely necessary. In fact, he thought the heavy custom AFOs may hinder her locomotion. Needless to say, we decided to do nothing at all, at least for a while.

I knew PT would want to follow up on that, and was sort of dreading the conversation. When I told her what we had decided, she suggested a lighter-weight insert, for which she will measure D and we can order. We can definitely give those a try. She also suggested sneakers and sandals that have arch support.

We went over plans for preschool, and activities we should try at home. This year I’d like to get my act together and enroll in a swim class with D.  Someone please hold me accountable.

Naughty

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The hole you see above was created by Daphne by jamming my car keys on Lucy’s bedroom door, which she closed, locking the dog in.

When the NICU nurse practitioner used to warn me after self-extubations that, one day, this child would destroy my house, she was right.

I am not used to parenting a child who is up to no good when she is quiet.