I have been meaning to write this for some time now. The last 18 months with Nate have been a roller coaster. Most of the events that have happened during that period of time have been kept close to my heart. I have a new insight to the scripture
"But Mary kept all these things, and pondered them in her heart." {Luke 2:19} My emotions have been all over the place with support only from a few dear friends. I did this on purpose. Only a few select people knew what has been going on. That was a self preservation move on my part. If I had to go through each story numerous times, I think I would have broke. I am going to list things chronologically before I share some of my personal feelings.
(**Warning - this is going to be a LONG post. Most of this is for my records, but I have had several questions from dear friends asking for an update - so here you go!**)

October 8, 2015 - Nate's 9 year check-up. At this appointment our pediatrician expressed concern because Nate had fallen off his own growth curve. We'd long since abandoned the "normal" growth curve, as Nate was in the 4% for weight and 3% for height for a very long time. However, he had remained steady on that curve until sometime between July and October of 2015. He feel to the 0% in both weight and height. {Note, this is as low as you can go. You can not fall below 0 on the chart. You can exceed 100 which Kennie and Justin have both done before they were 1, but you can not go lower than 0.} She put in for an x-ray to determine bone age, a series of blood tests, as well as a referral to a pediatric endocrinologist {Will be referred to as PE for the duration of this post.} Due to my anxiety in this area being very high, I put off making the appointment for the PE and completing the bone age. I did take him to get labs drawn and they took 10 vials of blood and tested for EVERYTHING!! All the tests were normal with exception of his growth hormone level, which was 68 {it was only a tad bit low with 85 being the normal.} Picture above was taken right before they took his blood.
December 2015 - I finally scheduled the appointment with the PE and took him to the base and had the x-ray done! He had turned 9 that previous August so he was 112 months and his bone age came back at 60 months.This is obviously a huge difference in where he was and where he should be.
January 2016 - We had our first appointment with our PE. She measured and weighed him (121 cm) and then scheduled an appointment for April for a 3 month follow-up height check. That was the first step. {Very anti-climactic!}
April 2016 - when measure and weighed, he lost .5 lbs and was 120.7 cm. (They did 3 height and weight checks each time!) Due to the lack of growth, he failed the 3 month check and the next step was an 8 hour growth hormone test that he had to be an inpatient for. (This was the appointment where the PE first mentioned the possibility of a pituitary tumor. There will be more on this in a minute.)

May 27, 2016 - the 8 hour test at Summerlin Hospital. We had to be there by 7:00. We sat until 8:40 when they came in to start his IV and access to draw blood. (They had to have 2 ports in case one failed because of the type of test it was.) They took a baseline grown hormone lab (2.1) and then administered the medication. They then did a blood draw at 60 and 90 minutes post medication (.7, and 3.7). Then they did IV administration of arginine over the course of an hour. Then they did a blood draw at 30, 60, and 90. (10.2, 3.0, and 1.7). At this point - 2 pm - he was finally able to eat (the entirety of the test had your be done while fasting. No food after midnight the night before.) He ordered a pretty big meal from the hospital! Hot dog, Mac & Cheese, dinner roll, can of Coke, and a vanilla milkshake. He was such a trooper. Due to the 10.2, they consider him as have passed this test. This means his diagnosis was Idiopathic Short Stature (ISS) instead of Growth Hormone Deficiency (GHD). This diagnosis would make it hard for us to get approval from our insurance for the growth hormone medication. {Side note here: while they were administering the arginine, he fell asleep. This is the first time since he was 2 that he napped during the day. That's just not Nate. I was terrified and the nurse could see that. She had the doctor call and talk me down a cliff explaining that it's quite normal for the kids to fall asleep during the administration of the arginine.}
May 30, 2016 - I received a call from the PE informing me that he passed the test and she was worried that he had a pituitary tumor. During our appointment in April she went into great detail about this concern including the treatment plan, as she was sure this was his problem. We had to do the 8 hour test before our insurance would approve a sedated MRI. Now that he "passed" the test, a tumor was even more likely and we scheduled the sedated MRI.

June 22, 2016 - the date of our sedated MRI. The staff was amazing and he was such a trooper. They gave him the pill to take and he played Skip-Bo on my phone sitting in my lap while we waited for the meds to kick in. Having him sit on my lap and drift off to sleep was the most unexpected blessing. My emotions had been all over the place and being able to just hold him was much needed. The nurses left me alone for a few minutes as I sat there with tears streaming down my face praying with everything that I had that it wasn't a tumor. I didn't want to be strong enough for the Lord to allow us to wade through the waters of that trial. They gave him headphones and let him pick the station as they did the MRI. The nurses said he was the best kid they had ever had. He didn't move a single muscle, but was awake the whole time, just listening to music.
June 30, 2016 - I received a phone call from the PE. Here is our conversation: PE. "The good news is that his pituitary is perfect." Me: "Okay, what's the bad news?" PE: "what makes you think there's bad news?" Me: "The only time a conversation starts with 'the good news is' is when there is also bad news that follows. There's bad news, right?" PE: "Well, yes. He has a Chiari Malformation. It's actually quite a big one and we aren't sure why it hasn't been caught before. You'll need to see a Pediatric Neurosurgeon to be cleared to continue the growth hormone course we are on."
As I tried to digest and research what a Chiari Malformation was, I also tried not to lose it at the thought of being referred to a Pediatric Neurosurgeon (referred to as PNS for the remainder of the blog post.) That is a very scary reality. When Kennie was diagnosed with epilepsy and referred to a neurologist, I was okay. A neurosurgeon is a whole different ballgame. While doing my research, I heard from MANY sources that the PNS here in Vegas wouldn't deal with you unless you were willing to do surgery. (For those unaware of what exactly a Chiari Malformation is, it is a condition in which brain tissue extends into the spinal canal, present at birth.) I wasn't willing to jump on the surgery train unless it was necessary, so I turned to family for help. Aaron's dad has worked with many doctors throughout his career at DMBA and he mentioned a PNS that worked out of the University of Utah hospital that specializes in Chiari's. We made an appointment with him that would overlap a visit to Utah and continued to pray for guidance in this whole process.
August 11, 2016 - Our appointment with Dr. Brockmeyer was amazing! I am SO impressed with his ability to comfort the scared parents yet at the same time provide an environment where the children are comfortable. {I guess that's why he's the Division Chief of the Pediatric Neurosurgery Program at the University of Utah!} I am SUPER grateful that Aaron's mom accompanied me to this appointment because I was a nervous wreck!! He was shocked and amazed that Nate hadn't had many symptoms. His Chiari is moderate (at 7 mm) and he's had it since birth. {Maybe this was the source of his non-stop crying until he was 9 months old....} He commented that he'd never had a patient with a Chiari 5 or larger without symptoms. {Nate has 1 occasional symptom. When he has a head cold or URI he will have pain when he coughs or sneezes. This is caused by the increase in cranial pressure.} We decided not to operate due to the lack of symptoms and just monitor the Chiari. He did clear Nate for us to continue the growth hormone treatment. (I will do a follow-up post with the events of our flight home that day. Oh. My. Heck. Talk about a stressful day...it was the day that didn't want to end!) I'd like to share one thing that I LOVE about Dr. Brockmeyer. He is one of the only neurosurgeons in the world that is doing active research involving Chiari Malformations. Nate and I both had a DNA & blood panel that will be tested and evaluated looking for explanations on how and why Chiari's appear and if there is any preventative measures that can be taken.

November 22, 2016 - Pivotal appointment with the PE. Due to the length of time with no growth (123 cm), Nate's diagnosis was changed from ISS to GHD. This was big!! Immediately our insurance approved the growth hormone therapy instead of denying it as they had done with the ISS diagnosis. I was prepared to fight them to approve the treatment, but was relieved that I didn't have to fight for this! From this point, things happened pretty quick!(Picture to the left taken this day. He had grown less than 2 cm and gained less than a pound in 1 year period.)
December 2016 - I received the Norditropin (Growth Hormone medication) in the mail, but needed to wait until we could get a nurse here to give us the 4-1-1 on how this all works.

January 13, 2017 - Our meeting with the injection therapy nurse. (Norditropin is a pen similar to insulin that is injected per dosage instructions.) She was GREAT!!! Nate connected with her immediately and wouldn't stop talking. I just sat back and let him run the show. Many question the freedom I give my kids when it comes to medical decisions. I am of the opinion that they are the only ones that know the way they feel and I refuse to take away their ability to control that. I have gone the rounds with physicians regarding the denial or insistence of treatment based solely on the go ahead from my kids. (Again, more on this later!) Nate has run the show when it comes to his medical care since the age of 4 and his ADHD diagnosis. It is not my job to determine what he feels, but it IS my job to advocate for him in his health. Our home nurse went through a bunch of information on the way to care for the medication, prepare his body each time, and the ins and outs of the actual injection. It was SO neat to see him advocate for his health and take responsibility for the entirety of the situation. This was the first day of his injections. I believe between then and now he has missed 2 days. Pretty great for a 10 year old if you ask me! He gives himself the shot everyday (I have only done it once) and has become a pro!
One of the side effects of Norditropin is elevated blood sugars. This was a huge concern to me as my brother was diagnosed with Type 1 diabetes at the age of 14. When he was taken to the doctor for a stomach ache, his sugar level was 836. Upon hearing this information, the PE agreed with me and we decided to do a fasting sugar test each morning. This would help us gauge his response to the medication.
January 20, 2017 - This is the day we started sugar testing. The goal was for his sugar level under 100 (fasting). We did testing for 35 days, and of the 35 days, he was only under 100 ten times, with his highest reading being 152.
February 2017 - We did a repeat bone age x-ray. This came back with a bone age of 72 months (He was 128 months at the time).
March 20, 2017 - Follow-up check with PE. GREAT NEWS - Nate grew 1 inch and gained 3 pounds in 4 months. (It took him 18 months to grow his last inch!) She was significantly concerned by his elevated blood sugars and performed an A1C in the office (result of 4.8%). She ordered thyroid testing as well as a Insulin-like growth factor. His TSH was slightly elevated (4.7) and his IGF was 126. (Normal for a 10 year old is 97-407).
(Note - in looking at the ranges for the IGF, even someone under 1 year old could have an IGH result of 126 and still be in the normal range.)
That brings us to date. I am currently working with the PE to decide if we should up his growth hormone amount, but for now we are in a routine AND seeing progress. We are cautiously optimistic in his response to the medication. I will be eternally grateful for those who have listened to me, held me while I cried, and were strong when I no longer could be.
Many have asked how long Nate will have to continue treatment. The short answer is 8ish years. The long answer is that we will check his progress in 2 years and if we are pleased with his response, we will continue treatment. If not, we will stop. (Strange - right?) The plan is to continue the growth hormone injections until he reaches a bone age of 14 (or 168 months).
Thanks for hanging in! I know that was a lot and I have probably lost everyone! I needed somewhere that would hold the details and feelings of this time. Some of it is housed in my journal, but I haven't been super consistent about writing (I am trying to be better) and needed it all in one place. Throughout the few days it has taken me to record this information, I have come up with some things that I want to remember as well as some things that I want Nate to remember.

- The passion in which you live your life.
- The strength and fortitude that you had as you faced down each and every trial you encountered.
- The way you felt as you fell asleep in my arms waiting for the MRI.
- The look in your eyes as you silently looked to me for assurance and comfort.
- The way you stood up to others when they teased and mocked you, but then dissolved in tears the minute you walked into my arms.
- The way you tease and joke in order to mask the hurt you feel.
- That he has a purpose on this Earth. He is indeed a child of a loving Father in Heaven. He loves Nate even more than I do, and although it's hard for us to comprehend, that is truth.
- How at times I felt so alone and then at other times felt surrounded by angels!
- Each day that I have with him is truly a gift.
- How easy it is for him to make you smile one minute and then the next minute your fuming!
- How facing this trial together has drawn us closer and my heart is bursting with love!
Thanks for hanging in through all that. Whatever battle you are fighting, know that while you may be alone - you are never alone!! If you feel you can't lean on those around you, I KNOW that there are many people supporting you that you can't see. I have felt the strength that only they can provide. There were times that I was sustained through these angels. If you are struggling and need someone - I am always up for a phone conversation or lunch (for those in Vegas!) There are people would want to love and support you! The hardest part is reaching out.
I'll leave you with a bit of humor. This has been our motto around here!