Wednesday, July 31, 2013

August is a month of doctors

Well August is really a month of appointments for Haven.  Since our move we have been gathering all of her doctors and getting everything in order.  So now everything is finally set up and the long waits for insurance approvals are done (for now).  We use to not have to wait - but I can now give thanks to Obamacare for that.  We only wait 2 months......not bad!

Next week she goes in for her lab work - she has to have her liver and sodium levels checked every four weeks due to the medications she is on now.  Any changes and the doctors will need to alter her medication.

August 14th we go in to talk to Pulmonary - because with this insurance they need to check to see if she still needs to have a sleep study.  It's too expensive so they don't want to do it without full understanding of ROHHAD since it's not listed in the books as a disease in this country yet.  There aren't enough cases.

She was finally approved to have the growth stimulation test done.  So we will do that on August 30th. it is a 6 1/2 hour test.  So they will put Arginine in to her blood for 30 minutes that should trigger the growth hormone and then they will measure that every 30 minutes with blood withdrawals.  She must be a 9.9 or less to be approved by insurance, if she is a 10.0 she will not be approved.  It will take about a week to get the results.

We were also informed that Haven's IVIG is too expensive in the land of Obamacare.  So they will no longer give it to her every 8 weeks.  They won't even cover the labs to check if she needs it at 8 weeks. She will have lab work done at 12 weeks and if she is below a level of 200 they will give it to her.  Remind you that a normal person is around 1400 and Haven has never been over 500 since 2009.  So if she drops to 0.......but no one seems concerned because she hasn't been sick yet.

Did I mention that her medication is now triple the cost of what it was in 2009??????  We were shocked to find out that her medication is $30 each for a month supply - I have no idea yet what it will cost for her to do growth hormone treatments.  Which is daily for mulitple years.  I have been informed by friends that it is expensive and now hardly covered.  Only to add that co-pay to doctors has also tripled.....WONDERFUL!  If anything it has actually helped because we will not be visiting doctors unless we are absolutely dying.  How can someone afford $35.00 co-pay for a doctor to honestly do nothing.  Pay them so they can write a referral to a doctor you have to pay another co-pay for and most likely they are horrible and now you need to find another doctor. I've done that way too many times.  Just not worth it.

Saturday, July 27, 2013

Reagann, ROHHAD, and Victoria Justice


Our friend Reagann is doing remarkably well.  Last Friday she was able to go to a Victoria Justice concert and got back stage passes to meet her.  She was first in line.  What an amazing day!  Haven was so excited for Reagann.  She loves Victoria Justice.

Reagann had a sleep study over the weekend we are just waiting for her results - which having been at that facility a few times it will take a week or so to get anything back.

Good stuff Reagann.....loving the good news.  Always thinking of you

Wednesday, July 24, 2013

Hope Kids


We're so happy our friends told us about this great organization that helps children with cancer or other life-threatening diseases.  We have met so many people now and have enjoyed many great times at the events for the kids.  It's great because Rohnin can go to.  We just love it.

If you are looking to donate for a good cause this is a great one.  We definitely use it and Haven is opening up.  She has even met some kids at a christian church near our house that go here and they have invited her to come to church with them.  It's so great.


Haven on Mystery Diagnosis

ROHHAD Mystery Diagnosis

if you click this link you can see Haven's TV show we did on Mystery Diagnosis about ROHHAD Syndrome in 2010.  I was a few months pregnant with our second daughter at the time....we did 15 hour day shooting at the hospital, our house, and in a studio.

Sophia on round 3 of IVIG for ROHHAD


Last week Miss Sophia (check out her site at Sophia's Journey) had another round of IVIG.  Her mother has been tirelessly working to get Miss Sophia to Hopkins for the past 2 years for treatment but with money being tight and having other children they have not been able to get there yet.  Her current hospital will only administer the IVIG treatments right now.   It's very hard to watch your child go through the pain and suffering.  I wish I was closer to help them out.  I am always thinking of our dearest friends with the biggest hearts in MA.

Love you guys......keep us updated on Miss Sophie

Reagann........hanging at Ronald McDonald House in Baltimore




This is Reagann with her mommy.....they both had their hair done before Reagann started to lose hers.


This is our friend Reagann at the Ronald McDonald House in Baltimore.  She has been progressing very well and we've been watching her and keeping up with her the entire way.  Oh wow....I remember the days when Haven was sitting in the same spot.  We are so happy to see a smile on Reagann's face.  She certainly has been enjoying camp and the playroom.  She will hopefully get more information about a possible date home at the end of the month.

Reagann is now 40 days after her Hi CY treatments began.




We are so super proud of you Reagann...keep up the great work!