Growth Hormone Deficiency X 2, let the adventure begin......

Facebook post on the day Sammy was diagnosed (May 17th):

In an effort to help others by being completely transparent, I’m going to share the story of these two. Cooper and Sammy are a year apart and like twins to us. (For those that have twins I know you had it worse so forgive my analogy). They are so similar and always have been! They were teeny and precious and the SAME for so long. Along came baby sister and we noticed her starting to catch up in height as they slowed down. We begged their pediatrician to look into it and he always went back to the fact that I am not a “big” person. They have always been the smallest in their class and often asked if they are in 4th/5th grade (nope 7th and 8th). Fast forward to our recent hard fought battle. We finally got a dr to refer us to an endocrinologist in July. Phil called every day to get us in (it was a 6 month waiting list). We got in and had to PUSH to get testing done. In January, after a LONG process, Cooper approved for treatment for Growth Hormone Deficiency. At that point we began the process with Sammy. Five months later (today), she was diagnosed as well. I share this because with Growth Hormone Deficiency comes fear, sadness, wonder, anxiety, stress, sports struggles, embarrassment etc. We have walked this alone. I can’t find anything on the internet for support or to see other’s journey. I have personally only spoken to ONE person with a similar story. If you are going through this or know anyone that is, call me. I’m here for you. Cooper and Sammy are here for you. Our world now includes nightly injections for both of our kids, insurance battles and doctor appointments. But we are thankful! God made these two just the way He wanted them......struggles and all. Their height has never defined them. They also will never be super tall. This intervention will help them get to their normal potential which for Sammy is still a bit shy of 5 feet (Cooper much taller). We consider ourselves blessed to have made it this far in the journey. #bigthingscomeinsmallpackages

Cooper:  We started this process about 7 years ago.  I asked his 

doctor if there was a reason for concern.  I was always told no.  Cooper would get "hip pains" and so they sent us to a ped ortho.  Then they sent us to a pediatric rheumo because of a positive ANA.  They told us to come back if he had an "issues".  We then had his blood tested for celiac and other things.  He began a gluten free diet at the end of 7th grade and were so hopeful he would grow.  We finally got a referral to an endo in July of 2018.  They scheduled an appointment for us to be seen in December 2018.  Phil called almost every day to see if there was a cancellation and finally we got an appointment in August 2018.  That started a long process that got us where we are today.  At that appointment the doctor wanted to watch Cooper for 6 months to get "baseline data".  Phil and I both showed the photos of Cooper with his peers and begged they do more than wait.  They agreed to schedule some bloodwork.  Due to low IGF, they scheduled the STIM test for early December 2018.  That test is NO fun but Cooper did great.  We went to the follow up appointment two weeks later and were told Cooper qualified for Growth Hormone Deficiency.  The markers need to come back less than 10....however they really like to see them less than 5 for insurance to pass the meds through.  Cooper's highest number was a 3.  I cried when the doctor told us because I felt like 14 years of advocating for our son had finally paid off.  Cooper was 55.75 inches at his first appointment in the Fall and 76.12 lbs.  In December he had naturally grown to 56.06 inches and remained 76 lbs.  In January we completed a brain MRI to rule out a tumor on the pituitary (protocol for GHD).  We were called that it was normal and then we wait!  We were told the Prior Authorization process could take a few months so to be patient.  We WERE patient and in February called to check in.  That is when we were told they accidently left his PA on the fax and would send it that day.  In March we were notified the insurance company had the PA and would proceed.  That started HOURS of talking on the phone with the insurance company to get the right items sent to us, including training.  Cooper started his shots on April 4th, 2019.  He was 14 years and 4 months old.  The day he started his shots he was 56.2 inches tall and weighed 78.5 lbs....in 8th grade.  Cooper has given himself EVERY shot since he started.  He takes it to sleepovers and even took it on his school trip to Washington, DC.  He has been amazing through the process.  Today, 68 days into the process, Cooper is 57.75 inches tall and weighs about 82 pounds.  We are SO grateful!!!!!

Cooper with his peers in 8th grade

                    Sammy with her peers in 7th grade                         

                                                                         STIM test day

Sammy:  Sammy's story was a bit difference because she is a girl.  She has always been tiny but that served her well in her sport so she didn't mind.  The social implications of being tiny/short for a girl are not the same as a boy.  When Cooper was diagnosed, we made an appointment for Sammy to be seen too.  They immediately reacted with more urgency with her, since she is a girl and girls stop growing sooner.  They wanted to rule out Turner Syndrome so they did chromosome testing along with a new bone scan and bloodwork.  Her bloodwork and bone scan warranted the STIM test.  Since we had been down this road before and knew diagnosis time to starting shots time can be 3-6 months, we took the first appointment we could get for the STIM test.  That meant Sammy missed her school trip to Charleston.  She had a HORRIBLE reaction to the test and lost consciousness for a moment, scaring the medical team and Phil (who took her).  Her numbers came back and her highest was a 0.3 so she is SEVERE.  The doctor used the term "aggressive" when speaking of her treatment plan.  They only predict Sammy to be between 4'10" and 5" but to get to that, she needs GHT.   We scheduled the MRI, the last step of the process.  As we were boarding the ship for Sammy's 13th birthday cruise, her doctor called.  He said they found a Chiari Malformation 1 on her MRI.  This should not slow down the GHT procedure but we have to consult with a neurosurgeon.  It is just another layer to this diagnosis madness and our sweet girl's journey.  Sammy was 54.45 inches in February at her appointment and 54.65 inches in May at her STIM test.  We are hopeful the GHT will give her the energy back that she sometimes lacks.  She complains of being tired A LOT!

So, here's to new adventures, shots, doctor appointments, lots of hours on the phone with insurance companies and NEW beginnings for our sweet kids.  I am glad we pushed.....even if it took years to find the right plan for our kids.  We know this journey has made them stronger and more empathetic people and for that we are grateful.  It is all just a part of their bigger plan.  I would not say they LOVE the shots but they are amazing and true fighters.  It could be so much worse.