She is supposed to call back on Monday with information about an appointment with the hematologist.
I have lots of questions about how this will affect his life, but my basic understanding of the disease is that it will mostly just be a concern if he needs surgery or sustains a major injury.
There are varying degrees of deficiency from patient to patient, and I don't know yet where River falls in that spectrum.
Like I said, I have lots of questions for the doctor.
At this point, the news is mostly making me sad. Sad that he'll have this condition to deal with his entire life. Even if it doesn't hinder his day to day activities, he will still most likely need a medical i.d. bracelet and the worry of something happening will always be at the back of our minds. That sucks.
In the meantime, I am trying to focus on the good:
We discovered his condition before his scheduled boy-parts surgery in September.
.....................................
And with the warm spring sun shining this past week, it's hard to stay in the dismal dumps, brooding over what is still mostly unknown.
I am glad for the distraction of parks, playgrounds, and long walks. The kids are, too.
On Thursday, Linda joined us for a morning in Fayetteville and then lunch with my mom at the Flying Burrito. Liam was thrilled to see his Auntie Linda, and River is slowly warming up to her. At least this time he didn't give her any dirty looks... We really need to see my sister more often.
...................................Liam's latest favorite song, the one we play over and over and over in the car is "Sunny Day" by Elizabeth Mitchell. Or as Liam calls it, The Flowers Grow song.
The simple lyrics are just what we need right now (you can hear it here):
The sun comes up.
The flowers bloom.
The rain comes down.
The flowers grow.
People dancing everywhere,
The sun comes up again.
Dorothy, I've been wondering about River ever since you took him to the doctor last week, that morning I saw you. And I kept forgetting to ask whenever I talked to you. I will try to encourage you toward the positive so you don't get bogged down in the negative. :)
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