18 months old + medical update



So Matilda is officially one-and-a-half. And she is definitely acting her age. She runs around the house like it is her job, she wants to do everything her brother does, and she makes us all laugh with her funny shenanigans. There is not a day that goes by that we don't hold her tight and thank the high heavens that she is still in our arms.

Our New York visit went very well. All of Matilda's labs look good - meaning that her donor liver is functioning perfectly and there are no signs of rejection! Her blood pressure, however, is still causing an issue. It is high, and medication is not lowering it as we hoped. She had an ultrasound that indicated a slight difference in size of her kidneys, so we will keep an eye on that and follow up with whatever the team decides to do next.

During the visit Dr. Arnon explained Matilda's whole liver transplant to a resident and Matilda was happy to add her two cents and point along at the diagram like a pro. She was also happy to show everyone her very yellow teeth. It turns out that the yellow color is due to the high levels of bilirubin that were in her system while they were being developed. Hopefully her permanent teeth will not be affected. Her first four are white, so that is good. But, sad day for the rest of her little baby teeth.

After returning to the Ronald McDonald House, Matilda was sitting on the couch with Tyler one minute and the next she was on the floor and missing one of her bottom front teeth. It happened so fast - there was no blood and only tears for a minute. But, what concerned us the most was Matilda's sleepiness. It could have been due to a long day at the hospital, but taking chances with Matilda is not really our jam. So, off I took Matilda to the Emergency Room. I was terrified to touch anything or even sit down, but was thankful that they got us in right away. One of the perks of having a liver transplant, I guess - faster service in all waiting room settings. By then Matilda had fallen asleep and though I tried to wake her, I had no luck. And then they checked her blood pressure, and it was much lower than normal. My heart began to race, as they whisked us back to a room. I spoke with three doctors as they cleaned the room and put new sheets on the bed. An ultrasound was done on her head, along with a full evaluation. Matilda woke up mad - of course - and let everyone know that she was not pleased with the overreaction and was simply taking a rest.

Her tooth bothered her for a couple days, but she is back to eating and drinking regularly. We will follow up with a pediatric dentist and see what we can do about her prominent gap.


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