Our family had a great vacation to Colorado. My “Christian” did not have any bleeds, just a horrible cough, “Lance” had no issues and the most exciting part of the trip was that blizzard like weather hit in the middle of the week and we did not have heavy coats đŸ™‚
The main reason for the trip was to see our second opinion HTC regarding Christian’s inhibitor. Not great news as of now. His level is down to 11.9 but the doctor is truly stumped. Christian is allergic to the Factor 8. The avenue we are investigating is “desensitizing” him to the factor. This would mean an extended stay in the hospital (in Denver). But there is too much we do not know (and the doctor agrees as he is reaching out to colleagues across the country). It’s a little too much to even think about right now.
We are reaching out via social media to see if others have endured this type of complication and will be attending an Inhibitor Summit this July armed with questions. We are planning on taking it slow and getting our ducks in a row.
And yes, today was our first day back to work and school and the elementary calls…Christian has twisted his “good” ankle. In the wheelchair he goes and is home with a bleed. And yet again, another field trip is tomorrow and it looks like we may not make it.
There are many things in this world that are worse than missing his third field trip of the year…Boston, a wreck on I-40 yesterday killing a 7 year old child, losing a job, losing a spouse….but it still hurts that there are times when my son has to step back.
It all depends on how we, as parents react.
I just pray that he eventually embraces his bleeding disorder.
I know that sounds strange, but we all need to embrace ourselves just as we are, don’t you think?
