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.

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

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!

Sophie's Journey

This is our friend Sophia.  She has been a long time friend of Haven's and we love her family dearly.  Lately Sophia has been struggling with getting help from doctors and has been waiting to start treatment.  I have included a note from her mom below and there is a link to her Facebook page.  Please check out her page and keep yourself up to date on Miss Sophia.

Sophie's Journey

I would like to tell you a little bit about my Sophia. She is the youngest of six and was born on October 19,2004, by C-Section. She was only a C-Section because i had one before her. She weighed in at 9 pounds 6 onces and was 21 inches long. Sophia was healthy but she was diagnosed with kidney reflux at 3 months old and antibiotics took care of it. She would out grow the kidney reflux by her second birthday. When Sophia was 18 months old she was tiny at 20 lbs but by the time she was 22 month she had gained almost 25lbs her pediatrition sent us to the OWL program at childrens hospital that's when we met Dr. Rhodes. i explained Sophia's symptoms - the throwing up, the thirst, the constipation. So after 2 long years of medical appointments and testing Sophia has been diagnosed with ROHHAD syndrome.

( Rapid onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation).

We have a long road ahead of us and not knowing when her body will stop working is very difficult. Just knowing that is a daily struggle. I will try and update Sophia's progress daily in her journal and will soon add pictures and medical updates and appointments. I want to thank everyone for the support I have received since receiving Sophia's diagnosis.

We are almost 2 years into our diagnosis and things have progressed with Sophia's symptoms and she has gotten more symptoms and has lots of medications to take each day. I have meet some great ROHHAD families since her diagnosis and the internet has brought all of us closer together. I will continue to spread the word about ROHHAD in hopes that more families will be able spread the word. And to help other families who are looking for a diagnosis for their child.

Endocrine

So we have a new Endocrine doctor.  I'm becoming a pro at new doctors.  She has worked with a ROHHAD child and understands the ins and outs.  I have all of Haven's latest labs printed out.  Her last Endo doctor wanted to get her on Growth Hormone shots immediately as she is seriously low.  So I will bring all of these labs with me and hopefully have a great discussion.

We hope to get on a good routine with this Endo doctor and hope Haven likes her.  We are also waiting on Pulmonary to call.  This is just because we haven't had a sleep study in two years and it's time for another one just to get a base line reading.

Nurse Patel ----- 2009 and 2013

As Reagann was getting ready to enter in to isolation at Hopkins I told her about a wonderful nurse Haven had in 2009 during her isolation stay.  This is Nurse Patel.  She was amazing and we truly loved her with Haven.  She even dealt with Haven's crazy sleep.  Well I received a photo from Reagann today and I thought I would share.

This is Haven in 2009 and Reagann in 2013.  We are so happy she got to meet Nurse Patel.  We are sure that Reagann will be well taken care of.  Patel has stayed in our hearts and minds for many years. 

She should be nominated as best nurse at Hopkins! 

Reagann is on her 3rd of 4 doses of chemo and has started to lose her hair.  She was able to join in a part at the hospital and she donated her hair to Locks of Love.

Amazing Reagann....we can't wait to see more photos!

Pediatric Oncology

If you've never had to go in to a Pediatric Oncology room or visit a floor you should count your lucky stars.  It's one of the worst places we have been in for the past 6 years.  You meet children and you play games and crafts with them and then the next time you visit you find out they didn't make it.  Or you see a newborn or a 6 month old baby receiving chemo and it just breaks your heart.  WHY?

Just very very sad.

Today they had a party for a little girl who was receiving her last dose of chemo and she got to ring the bell.  I was so happy for her and her parents.

IVIG Day.....spending the day at Primary Childrens

We are spending another day at Primary Childrens.  Today is for a round of IVIG.  Haven's levels were around 220 this time.

We've been doing this now since 2007.  Yes it does get old.  My daughter was 3 when we finally found the tumor and got a diagnosis and she has endured surgeries and chemo since.  I spoke with our oncologist in Connecticut and she informed me that the reason we are still doing IVIG is not because of the Hi CY but because of the Rituxan.  Which kinda shocked me.  I figured it was from the Hi CY we did in 2009 when we wiped out her immune system.  But she had about 9 or 10 doses of Rituxan and you're supposed to only do 4 - 5.  Since it's a new chemo there isn't much history on it....not to mention no one else has used it for ROHHAD the way we have.  So as of now no one knows when she will be healthy enough to not have IVIG.

In March we ran a lot of labs to do a full work up and found out that Haven's calcium was scary low - normal is 9 and she was at a 6.  This can cause heart failure and such. So she was immediately put on an enormous amount of calcium and then was retested a week later.  She has since been fine.  But we did find out that her growth hormone has dropped even lower and we will be meeting with Endocrine to start on growth hormone shots.

During the past few months Haven was living with her Grandma in Virginia and she started this no sugar - extremely low carb diet plan.  Amazingly - Haven has lost 24 pounds and just lost another 2 pounds this past week.  She has started walking 1 mile a day on the treadmill and is even starting to play games and throw balls with her sister and brother.  This is insanely different than the "usual" Haven.  Her blood pressure has stayed around 98/60 and her O2 levels haven't dropped below 97 in a year.  We will be doing a sleep study in the next couple of months just to get another baseline reading.  But I do not foresee any issues there.  We are so proud of her.

So I'm finally writing in this blog.  I figured with the amount of ROHHAD families that still find me it is best to keep this updated and informed and hopefully help more families along the way.  I will be putting our family updates in my family blog - keeping medical stuff separate.  (Wylene - make sure you check there.  If you need our address for Haven let me know - we've moved a couple times this past year).

Again - I would like to have everyone to please put these kids in your thoughts and say an extra special prayer for Reagann as she will be receiving her 2nd dose of Hi CY at Hopkins tonight.  Please send her a card or two....it really cheers these kids up.  I will keep you updated on Reagann and other kids as I can through this site.  I'm starting to get a few minutes to myself each day and get to turn on a computer!

Love to all!