It's been a while since my last post. We've had a lot of change in the family these past few months to update you on.
As you know the past 1.5 years have been dedicated to moving Christian to the new in-home hemodialysis. This process has been a larger task than we anticipated.
All of the time missed had Christian running behind on schoolwork at Kehoe and it was decided it would be necessary to hold him back another year to keep going there.
Coupled with the financial crunch we have been working through, it was very obvious we had to make a change to public schools for the kids. Late in the summer, we made the decision when it was apparent some work I was expecting to start got either delayed or canceled.
So we have moved the kids from 1 small school to 3 different larger schools. The kids appear to have adjusted very well - God Bless 'em.
However, we were still having a terrible time with a family routine - Christian would get home at 4:30, we'd eat dinner at 5-5:30 and start getting him on the therapy at 6-6:30.
The problem is, sometimes it was taking as long as 3-4 hours to get his accesses started and so the other 2 kids were left to fend for themselves and Christian was going on therapy until sometimes 2am.
Even on days when things went right, we were having to leave the other kids to themselves and this was becoming a problem.
Well, we have moved Christian to a program at his school called "Hospital / Homebound". We started it yesterday and it has been wonderful.
Essentially Christian goes to school 1/2 a day, and we use the other 1/2 for dialysis time and teachers come to the house to teach him.
We are starting his therapy at 7am - usually have him connected and running by 8-8:30 and the teachers come between 9 and 11.
We've only done this morning routine for a few days now but it is WONDERFUL.
Christian will be going back to the hospital for a week to create a third buttonhole again - replacing the one that we lost at the beginning of the summer. Not sure of the date yet, but we'll let everyone know.
HI, i just found your blog. My daughter also has Atypical HUS, she still have her kidneys and she is on FFP one time a week. This is her third relaps since she was 4. How long he is been on dyalasys? can you e-mail me i also have other Q firstname.lastname@example.org
We will keep you in our prayers.
her bloog is www.annafinley.blogspot.com
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