Friday, October 7, 2011

Pulmonary visit

Well we had a pulmonary visit yesterday.  Nothing new to report.  This was a pre-sleep study visit.  Haven's next sleep study is on October 14th.  She has had some crazy snoring so we started her on Flonase each night.  It's actually a different name but I can't remember it because it's so long.  But it's practically the same thing as Flonase.


She is home from school today due to the flu mist being administered at school.  She now weighs in at 86 lbs and 45" tall. 

Tuesday, October 4, 2011

Back To School Night

We were very excited to go to Haven's back to school night.  She was looking forward to it.  Wanted to see all her old friends and meet her new teacher.  So far she is doing an excellent job.  She has had two tests and both of them were 100% .... so we've done a bit of a party dance. 

I was hoping Haven would be enjoying school as much as last year but she says she is a little bored and it's just not interesting.  So this is a bit concerning to me.  She reads like a crazy woman and I think it's just not challenging enough for her.  Not to mention she really argues with us about having to do PE class.  So on with the rest of the year. Teacher conferences are coming up.

She will be home half of this week due to the flu mist at school.  She is not allowed to attend because she has a weak immune system.

Oncology visit


Haven's last Oncology visit was August 26th.  We had hoped, as mentioned before, that her numbers would magically go up and she'd be able to have surgery to remove her port and no more IVIG.  This was not the case.  It was her first visit without her old nurse.  It was a bit stressful for her and I stayed with her for the day.

Excellent view of the port with the access needle in it.


She did very well.  We were there until about 4pm.  Her next visit is October 24th. We will meet with her Oncologist at that time to review Haven's progress and probably get a flu shot. 

ROHHAD in Ireland

 I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...