April 3rd, 2012 by Haveyroo

ROHHAD and our battle!

Well we are introducing lots of new doctors to ROHHAD lately.  We do seriously hope that by 2013 Haven’s ROHHAD treatments will end and she will just be monitored.  It’s been 5 years now!!!  But honestly, we still to this day couldn’t be happier that we stuck with the treatments and pushed through the pain.  Haven is so different than she ever was before treatments began.

So next Tuesday we will be spending our day in SLC.  She will be meeting with an Oncologist there to review her current dosage of IVIG and see what they think.  They are in contact with her other doctors and I know there are two other ROHHAD families that go there.  We may even be meeting up with them while we are there.

I scheduled our appointment at 1:30 in the afternoon since it’s a 5 hour drive there and a 5 hour drive back.  Rules are that siblings under 18 years old can’t be on the Oncology floor.  So I’m not sure what they are expecting me to do with an 11 month old baby.  We’ll deal with that when we get there I guess.

I’m not sure what to expect on Tuesday but I have Haven’s latest files - Haven’s pediatrician faxed them up to SLC so I know the doctors have already had a chance to review it all.

I had to reschedule Haven’s appointment to check her asthma to April 10th since we will be in SLC when she was supposed to go.

We will update when we get more info! :)

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