Monday, September 9, 2013

Endocrine Results

On August 30th Haven had a Glucagon/Arginine Growth Hormone Test. Which is to stimulate the Pituitary Gland to release Growth Hormone.

Our insurance says Haven had to be no higher than a 9.9 for them to pay for the treatments. If she was a 10 then they would not pay for the treatments at all. The doctor told me beforehand they have argued with insurance many times that 10 is no different than 9.9.

During the test Haven was given two doses of medicine(Arginine and Glucagon) for 30 minutes in the beginning that were to jump start her pituitary gland in to making growth hormone for the day. Then every 30 minutes they would draw a vile of blood and have it tested for the hormone. She was not able to eat for about 16 hours and she looked like a very white shriveled grape by the end of the day. The doctor read the results off to me and kind of laughed but tried not to because she wasn't really wanting to laugh. I only remember the beginning number and the ending number. So Haven started the test with a level of --- READY -- 0.01 and ended the 6 1/2 hour test with a level of 0.07 -----........

I stayed quiet on the phone and she repeated them. I said - "so she's below 9.9 right"....

So Miss Haven has not made growth hormone in a long time and will begin treatments very very soon.

So she has already sent the request to insurance and she has already sent the information to us on what we will need to do and who will contact us on how to get started. I have no idea yet what it will cost us. I will be contacted by insurance and by home health care on how it will be delivered and how it will be administered. She seemed a bit concerned at how long she hasn't had the hormone and that she would have to start her out slow because her body has been without it for so long that we would need to go slow for her bones.

But if low to insurance is 9.9 and our Haven is 0.07.......then we know she's definitely LOW.


Miss Haven is homeschooled and has been for the past 1 1/2 years.  I am very thankful to my mother in law.  Grandma Cook (Beverly) has been AMAZING for miss Haven.  While we were in transit last year and not sure which way we were headed - EAST-WEST-NORTH-SOUTH - with no where to go and no one to take us in she happily opened her doors with wide open arms.  She invited our large and loud family in to her house for an indefinite amount of time.  Grandpa Simon made dinners and worked while Grandma helped with Haven's school and babysit while we traveled 1000's of miles back and forth for work.  I honestly do not know what we would've done without them but I could never thank them enough.

After about 5 months of invading their home we moved most of the crew up to Connecticut (before the multiple blizzards hit!).  Haven asked to live with Grandma and Grandpa.  She absolutely did not like Connecticut and frankly it's not our favorite location either!  So although we weren't sure how we'd deal with doctors we said yes.  Grandma took over Haven's schooling and I made sure she had all of her books and materials.  Haven spent the entire school year with Grandma working hard on her school work.

We just had her state standardized testing come back and I have a smart little girl!  She tested above average on Math, Science, Language Arts, and Reading!  She even took two tests she wasn't supposed to take and they have decided to give her the credits.  Below are two of them.

I spoke with the Academy for the school system and in Math she is above average and in Reading she is at a 10th/11th grade level!  Yes ---- she is only 9 years old!

Sunday, September 8, 2013

Endocrine Growth Hormone Testing

 Well we have been waiting a very very long time to do this test....I'd say about two years now!

We finally met with our newest Endocrine doctor and had all of our lab work done and of course Haven's Growth Hormone was extremely low.  We all know that.  So then we talked again and it was decided that Haven would do the Stim Test.  So this was set up for August 30th.  Perfect timing because Grandma and Grandpa would be visiting and could watch the babies while we were at the hospital with Haven.

 The test is a 6 1/2 hour.  She was not allowed to eat or drink after midnight until the test was over at 1pm the next day.  They give her a thirty minute continuous drip of Arginine and Glucagon.  Then every 30 minutes they took a vile of blood until the test was done.  They checked her blood pressure constantly and then at the end checked her blood glucose level.

By noon she was ghost white with dark brown sunken eyes.  She could barely stand to go to the bathroom.  I was getting very worried about her and she still couldn't eat or drink for more than another hour.  She was hold in there very well with a smile.

At 1:30 she was finally able to flush her port and her blood glucose came back at 63 - she had to be at least a 60 to leave the hospital.  We were very happy to be able to take her home with us.  

She was amazing.  She has always done these tests better than anyone can imagine.  I don't know if I could do them as well as she does without having a temper issue!  So for being so amazing I let her break her diet that she follows so meticulously.  She ordered a hawaiian pizza, fruit salad, M&M milkshake, green beans, and a fruit drink!

We are still waiting on the results.  It's been 9 days.......

Saturday, September 7, 2013

Labor Day Visit

 Grandma and Grandpa were finally able to come visit us.......  we were so excited!   Grandma had to have open heart surgery last May and hasn't been able to travel since so it's been a long wait to have grandma come see us and play.

 So it was great to have them come up and play puzzles and cars

We kind of kept Grandma on the quieter games

 Grandpa on the other hand got to hang out with Haven and do lots and lots of science projects

 Haven is homeschooled through the Virtual Academy and she and grandpa did 4 science projects that weekend

Lots of assessments and testing procedures

 solutions and mixings

 Grandma and Rohnin worked on her sign language and talking.  Rohnin only signs - although she understands every word you say.  She loves to sign.  She signs everything and is now signing 3 and 4 word sentences.

 So anyone that signs to her she is in love with.

 The next morning Grandpa was back to doing science while Rohnin ate breakfast

Mr. Weston even joined in

We had a great time and can't wait for the next visit.....we hear the Willis' are coming too........