We went back to see the doctor today. They didn't have to drain anything or poke and prod. (Lily calls this, "no ouchies.") For now, they are going to continue to watch the swelling and hope that if it stays wrapped up, that the pressure will help the swelling go down. If the swelling goes down, then no surgery for a shunt. We have to see the doctor weekly for awhile, and they've moved the next MRI into December. So, for now, we're relieved at where we are--and we'll deal with whatever comes, when it comes.
In honor of Lily's head wrap, her cousin Corbin got the "Mummy" treatment and sent her a picture. Lily laughed a lot at this! (Mainly because she loves playing with toilet paper too!)
On a related note...
We met a guy down at the hospital today while we were waiting on our doctor. His son was 27, wheelchair bound, and nonverbal. He told us their story, which started when his son was an infant with a bout of spinal meningitis. It left the baby blind, deaf, and unable to cry. They told this man and his wife that their son wouldn't live, but they went to the hospital every day for months regardless, and eventually, they were able to take him home. He had multiple surgeries but eventually gained back his sight and hearing, but had to have several shunts put in over the course of his first ten years.
For the last ten years, he's been stable, able to understand those around him, say several words and participate in life. He goes to a day program where he gets to interact with others and even go bowling. While we were with him, he "growled" several times, and laughed and smiled the whole time. His dad just beamed.
Liz and I were almost in tears listening to the father, but the man wasn't sad. He told us perhaps the most moving thing we've heard since the beginning of this process: No matter what happens, if your kid is happy, that's ALL that matters.
His kid is happy. So is ours.
1 comment:
I had a friend in HS whose younger sister was severely mentally disabled. She told me the same thing. "How can I feel bad for her? She's so happy!" That's having your priorities straight.
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