Well-child visits for Matilda are always a bit more complicated than the average. There is just a lot to take into consideration and a lot to talk about. Here are the stats from Matilda's last appointment:
weight: 25 lbs - 15th percentile.
height: 32 in - 1st percentile.
physical health: Although Matilda is small she is a very physically expressive child. She loves to run, jump, and dance to express her mood. This also means that when she is mad she prefers hitting, throwing, and scratching. We are working on finding other ways of expression, but I think she will always need some sort of physical release when frustration builds. She also has a very high pain tolerance, probably due to her experience with pain.
mental health: Matilda continues to amaze everyone with her spot on wit and bright humor. She is clever, innovative, and, most of all, determined. Her language is right where it should be and her emotions are appropriate for a typical two year old.
She can follow multiple step instructions, understand most words when used in context, count, recognize numbers 1-5, recognize and recall some colors, sing songs independently by memory, follow a schedule, recall situations, and anticipate what comes next. At the doctor's office, she preps herself for the each procedure without prompting - for example, she will hold her left arm out for blood pressure and while the number is being written down, she puts her finger in the air to have her oxygen level checked.
medication list: Matilda takes an anti-rejection medication (Prograf) and a hypertension medication (Norvasc) twice a day, as well as Aspirin and Magnesium once a day. That is not bad, not bad at all. Taking medicine has never been an issue for Matilda. She learned how to take and swallow medicine before she learned how to drink milk, so to her, it is literally no big deal at all. She runs over, she takes it, and goes back to playing.
concerns: We had everything down to a nice science. We had found a lab (45 minutes away) that was willing to send Matilda's blood work to get processed at a transplant team approved facility (for consistency). We had a phlebotomist who was excellent - he had been taking Matilda's blood for two years, was fast, and never fussed over her tears or size. But all that changed, he left, and now nothing goes as planned. The new lady is so slow that we end up waiting in the general hospital waiting area for hours (which is not only stressful, but dangerous for Matilda). She makes such a big deal about taking Matilda's blood and makes the whole situation much more emotional. And, to top it off, she has messed up a few times. Needless to say, we need to figure out a new situation.
The plan was to postpone her last blood draw until our trip to NYC which was supposed to be in December. That appointment got postponed because Matilda caught RSV and was contagious. We rescheduled for January, but then that trip got canceled at the last minute because we could not get a room at the Ronald McDonald House. Meanwhile, Matilda's long-time nurse practitioner - who we adore and emails regularly to check in - moved to a new position in a different department. And, somewhere along the line, our appointment got moved back again until March. So, the last time Matilda had labs was sometime in November and that scares me and makes me sick with worry.
Most of all, it just scares me that something could be missed. I worry that with all the changes and different circumstances mistakes could be made. I am doing my best to trust, to wait, and to remember that her transplant team is the best.
