Officially sprung!

We just got released from the hospital - woooo hooo!!!!

Maisie is feeling great. Her last PET showed that the tumors are completely gone. The biopsy continues to indicate that the tumors are completely benign, but their recurrence is concerning. We will be returning for dialysis once a week for three hours from now on. It is not ideal, but her kidneys have been traumatized and need all the support we can give them until the incisions have healed.

So far she's responded well to the blenderized diet. She's gained a little weight and is looking a little more her own age. After meeting with the orthopedist and the physical therapist we have decided to do a regular stander schedule of three hours a day. This is when I try to work in some educational stuff, reading, letter tracing, motor skills, shapes, stuff like that. Our "homeschool" is very loose at this point because we are working so hard on her medical obstacles.

In that same vein, we have recently noticed that she is not meeting some milestones that we would expect of a four and a half year old. For instance, she does not make strong associations between words and things. If you say "dog" she might make a barking sound, but she won't be able to point to the dog in a picture. She has really terrible balance as well. I know three-year-olds who are experts scooters and bikers, but she can't balance on a bike or a scooter. She falls down the stairs and off her chair a lot. She will attempt to feed herself and brush her teeth but her coordination is off and she gets food and toothpaste everywhere the way a one-year-old might. We have an appointment with a developmental specialist on Thursday and hopefully she'll be able to give us, if not answers, another clue to the puzzle that is my baby girl.

Lots of love,
Charlotte