Last night Haley slept better then in the hospital but still not the best. We had to wake her up to take her medicine. As you can imagine she did NOT like that at all. After screaming and yelling she finally took it. She is expecting it to taste horrible like the steroid medication. Luckily we are done with that and all the others are flavored. She doesn’t understand taking her medicine will help her head feel better.
For about an hour this morning she was fine. She stood in the shower letting the water fall over her head. I really want to wash out all the yucky stuff from surgery and help her now matted hair, but it is too early, no washing yet. At least she was able to choose to do a normal task on her own. I didn’t even let her have the soap because I was afraid she was going to put it in her hair.
She played with a toy Grandma brought this morning shooting a foam arrow off a bulb. She was able to get the arrows on the right part and squeeze the bulb shooting them to the TV and on top of anything high. She was giggling and having a good time. She is letting us know “my head hurts” and will voluntarily lay down for a little bit. Then she is up and moving again. Jeremy tried all afternoon to get her to nap with no success. She did go to sleep easily at night.
Her favorite movie is Tangled. That is all she has watched over and over in the hospital and here at home. I guess she doesn’t technically watch it from start to finish. She listens to it as she lays down or is doing something else.
This is the message we sent out and posted on Facebook:
We have received the best possible outcome of the surgery. The tumor was totally different then they expected in a good way. It was much easier to remove then all the specialists thought. The surgeon is confident he took out 98-100% of the tumor. Each time he talked to us he was amazed at how the surgery went. That to us is a miracle.
Her recovery has been rough. It is hard to manage pain on a 2 year old who cannot explain how much it hurts. Her speech and motor skills are much more advanced then they should be at this point with the size of tumor and the major surgery. The rehab doctor and mom watched her in amazement Thursday watching her move like a normal child. Another amazing miracle.
Last night we were able to take her home. She is much happier being home. She was even able to walk by herself yesterday. Amazing! She didn’t talk much in the hospital but she couldn’t stop after we left. Amazing!
She will be recovering for the next 3 months. Then she will go in for another MRI. It sounds like the multiple surgeries and chemo is at this point not necessary.
We still have a few concerns but we have so much to be thankful for. We know that faith and prayer is real and has helped us get this outcome. We appreciate all those who have exercised their faith through prayer.