nineteen months

Iris is nineteen months old today. Now that she has mastered saying, "No," she has started to excel at miniature temper tantrums. Another funny thing she does is she tries to hold all the important things at once. So, if she has decided that she absolutely must have the bouncy ball, her two blankets, and her teddy bear all at once, she tries to pick them up and walk around with them. This usually proves impossible.

Here she is smiling for Daddy.

The things I did today to deal with the tantrums seemed to work alright. Usually the tantrums start when she and I want different things, so  I explain to her that we are doing my thing first (eat) and then we will do her thing (read). Or, I tell her that we are almost done reading and that after reading we are going to go upstairs and change her diaper. She is usually very good at cleaning up after herself (when we ask her to) and I am trying to reinforce that by having her put her toys away with some regularity.

Her favorite things: baths, running, singing "The Wheels on the Bus," the moon, doggies, bears, people of all ages, and getting tickled.

As far as medical/health items...she is doing fine on her Losartan. They plan to increase the dosage slowly over several weeks. She does occasionally seem a little dizzy. I suppose this will be a life-long medication, though we haven't actually confirmed that.

She has her 18-month check up on Thursday, and will also be getting the first round of the RSV shots, which hurt a lot. I'm not looking forward to that. Friday we meet with the four cardiologists. 

Iris is doing a good job of growing. It seems strange to think that I used to be so worried about her growth. I remember the worry well, though her growth charts show that she is doing fine. She is WAY taller than most girls her age (above the 97th percentile) and has made it into the 15th percentile in weight-for-length.

Iris is above the 97th percentile for height

Iris is above the 15th percentile for weight-for-length

ct scan plan

Iris gets her CT scan tomorrow morning. She has to have been fasting for 8 hours, so we kept her up a little later than usual tonight and gave her some extra food. Then I'll wake up at 4am and give her some formula, which she can have 6 hours before the scan. The fasting is required because she'll be sedated.

The sedation makes preparations easier in the sense that I don't have to try to explain the whole thing to Iris. The hospital does have a little model CT scanner for stuffed animals, so I imagine that we will make use of that tomorrow.

In addition to the scan of the heart, the pulmonary team wants to get some images of her lungs. She'll also have blood drawn for some genetic testing -- an aortopathy panel. And just to round it all out, they'll check to see that her kidneys are flushing the Losartan out properly. I suppose that she'll be on Losartan for the rest of her life, which is a bummer, though I'm glad such a medication exists, I suppose.

We then wait a week to get the scan results, so next Friday we'll meet with a team of cardiologists who will be able to tell us how big the bulge is in the aorta and also give us some more information on the leaking happening with the aortic valve.

In other news, today Iris officially started saying "no." It's fun to see her experimenting with new words to see how people react.

Evan and I are holding up okay. It seems like our emotional reactions to all this news comes in waves. I am much more vocal and weepy with it all, while Evan only occasionally mentions his feelings. This is true generally. We also have been so busy with the rest of life that we've had very little time to sit together and process it all. We work well together when there are decisions to be made, or if there is hard thinking to be done. Situations like this require a lot of that.