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. 

Friday, September 30, 2011

AFLAC - Friends of a Feather - Fighting Pediatric Cancer

 AFLAC FRIENDS OF A FEATHER 


Friends of a Feather is the umbrella program under which Aflac conducts our Pediatric Cancer philanthropic initiatives: from critical research and medical care, to emotional support for children and their families. We invite other organizations, companies and individual to join us in our fight against all forms of childhood cancer.

Giving back to the community is an everyday part of what we do at Aflac. We've passionately supported the fight against childhood cancer for 15 years. Over our philanthropic history, the extended Aflac family has given more than $65 million to childhood cancer through our relationship with the Aflac Cancer Center and Blood Disorders Service of Children's Healthcare of Atlanta. The Aflac Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta is a national leader among childhood cancer, hematology, and blood and marrow transplant programs, serving infants to young adults. Recognized as one of the top childhood cancer centers in the country by U.S. News & World Report, the Aflac Cancer Center treats more than 350 new cancer patients each year and follows more than 2,500 patients with sickle cell disease, hemophilia and other blood disorders. No relationship has been more meaningful to Aflac than the one with the Aflac Cancer Center.



















If you are on FB you can check here:  AFLAC Duck - Friends of a Feather

Or Share the cause here:  AFLAC Friends of a Feather Cause for Childhood Cancer



We donated for our baby girl...can't wait for her to get her little ducky!!!  She loves these commercials!


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&...