Design
Sunday, July 15, 2018
Short people matter!
Wednesday, April 26, 2017
He's Concentrated Awesome!! {Nate}
(**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!**)
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!
Thursday, September 26, 2013
ADHD - Gratitude!

Saturday, September 25, 2010
Tuesday, August 24, 2010
Nate is 4!!
My little man is 4. Crazy how fast the time has flown by. I remember moving to Ohio and being terrified. New place and 2 months to get comfortable and turn strangers into family. I would be leaving Kennie and Justin with people who were virtually strangers to deliver my boy! Crazy to think back now. I was ready to deliver by myself while Aaron stayed home with my kiddos. However, in those 2 first months in Ohio, I was home. My neighbors were my saving grace! My friends at church saved me. The Lord truly blessed my life by bringing those very special people into my life!
Going back a little further, I will never forget going to my 20 week ultrasound. Aaron had to work, so I took Kennie (who was almost 3) with me. He said he was a big enough boy to go! So cute. I just didn't want to be alone. I will never forget the look on Kennie's face when the tech said that it was a boy. Kennie screamed - "No, it's our baby sister and her name is Baby Anna!!" He was SO mad. His/her name was going to be Savannah Marie. I was so sure that he was a girl. How glad I am that I was so wrong. What would we do without our Natey? :)
We would have a computer that isn't fried. (The motherboard is currently fried. This is after it was fixed by a friend in Ohio last year....) Our Wii wouldn't have had to be sent off and fixed for the pirate coin that had been inserted in the slot. He has destroyed a few cell phones, deleted a TON of saved games on the Wii and DSi, cost us a ton in diapers (and still does.....)
He also gives you this look that nothing else matters. Yep, you know the look. He climbs up on my lap to read me a book and just melts my heart. The boy is going to be the scientist that discoverer's how to break into some countries secret plans and saves the world. I just know it.
Sunday, December 27, 2009
Another Chapter in my Book
Aaron's choir pianist quit on him just over a month ago (he is choir director.) So, he has been playing the piano and I have been directing. We thought after last weeks Choir Christmas Sacrament meeting, we would be off the hook for a while. Well, we were informed last week that our Ward Conference is next week and the choir needs to preform. So, we put something together this week and had the choir meet for 30 minutes after church to practice.
My mom and dad took Maggie and Justin home after Sacrament meeting. (Justin has a raging fever). So, we have Nate and Kennie through choir practice. Not a problem - right? WRONG! Imagine this:
Aaron is playing the piano and I am leading. Kennie runs up to the front of the Chapel where we were at and tries to get my attention. I finally hear him and look over. He covers his mouth so others can't hear what he is saying and says - "Nate took his pants off and is running around." What? Seriously? So, I tell him to go tell Nate to get his pants and bring them to me so I can put them back on. He comes back, "Nate took his shoes off." To which I replied - "Where are his pants?" Kennie replies - "An older man helped him put them back on." Okay, relief.
So, I later find out that the "older man" was one of the members of the Stake Presidency. Seriously, my 3 year old was running around with his pants and shoes off in front of a member of the Stake Presidency. Humiliation! Plus, this "older man" waited until we got done to tell me that we have a charming son. SERIOUSLY?!?!?!
Enjoy a good laugh at my expense. I was mortified!!
Monday, October 5, 2009
Small Update
Kennie – He is doing well in school but is daily upset by the "fun" homework Justin has and his homework is so boring. He complains daily about being the oldest, but usually just accepts that he can't change it. He likes to pretend he is the boss.
Justin – Thoroughly enjoys school. He is excited about his homework and doing very well with his handwriting skills. He is enjoying reading and is very close to reading chapter books. His favorite part of school is being able to check out a library book and read it home for us to read together. He has brought home books about Snakes, Whales and this week brought home one about an elephant and his 11th birthday party. He started his allergy shots today and isn't very thrilled about it.
Nate – Well, it's Nate. What more can I say about Nate? He is as destructive as ever and doesn't seem to want to take a break from that. He does his best to keep up with the other boys. He even likes to "read" during their reading time after school. He will occasionally tell me he needs to go potty, but I haven't pushed it at all. I am not ready for that fight. Once he is potty trained, I am thinking about doing a home-school preschool group with a couple other gals in the ward. There would be 3-4 kids so I would only have to teach about one week a month. Totally do-able.
Maggie – Oh boy! She sure is cute!! But, she is in to as many things as Nate is. Always wanting to do what he does. She is talking like crazy. Her favorite words right now are: Costco (love this one), airplane, Mama, Daee, Nennie (Kennie), up, down, stuck and all done. She has learned the signs for help, please, more, all done and thank you. Having a girl is so foreign to me! I tell ya, it's crazy!
Aaron – he is alive! He just finished a week of nights and is trying to recover. Work is very demanding on his time and what he has left is spent on his demanding crazy wife! (Did I just say that out loud? This is Sassy – byw!)
Sassy – Well, I am alive. I have lost 16.5 pounds and have 13.5 left to go. I am so psyched. It has been a tough road, and I have earned every pound, but it feels so good. Once it is all over, I will bask in my glory and MAYBE have a Mountain Dew. That's a big Maybe!!
We are looking forward to the visit of Aaron's parents next week. We are trying to figure out some fun things to do in Alaska in October. We've heard that March and October are the worst months to visit Alaska. Hmmm….what to do? Any suggestions? Oh, and I am going to give myself props for the excellent photograph at the top of this post. Do you know how difficult it is to get all 4 kids to smile at the same time? I DID IT!!! I believe this maybe the first time EVER!! Anyway, off to figure out dinner! Ciao from Alaska!
Friday, September 18, 2009
Serious Help Please...
- He broke the Wii. We are hoping Aaron can fix this with minimal cost. We will see. (In all of his spare time!)
- He pulled the DVD player, cable box and all cables out of the Entertainment cabinet. (Did I mention that he had to undo a child lock on the Entertainment cabinet to get to these and the Wii?)
- He spread Balmex ALL over my new couches, in his hair and in Maggie's hair 2 minutes before we needed to leave. (I was upstairs for 2 minutes to change my clothes!)
- He was put in time out 2 times at "school" today for yelling at the teacher. (He has been going for a few hours a day for PCS care. It's free until your 20 hours runs out.)
- He got in my scrapbook room yesterday and colored ALL over my current layout.
- He got in my scrapbook room today and dumped all (I'm talking more than 1000) buttons on the floor. Guess what I'll be doing tonight?
- He broke the fridge child lock so he could get in the fridge and get a crush cup.
- Add this to crashing our hard drive (in Ohio) breaking 2 digital cameras and breaking our DVD/VCR combo. Just to name a few.
Tuesday, June 23, 2009
Holy Crap!!
Friday, March 13, 2009
Nate's so funny!
Saturday, December 27, 2008
Couldn't resist this one!
Monday, December 15, 2008
Are you kidding?
Thursday, October 16, 2008
This and that (it's a long one)
Thursday, September 18, 2008
Nate sings his ABC's
Nate started singing his ABC's to our refrigerator magnet the other day. Aaron caught it on his phone. Sorry it's not great quality, it is from a phone. He is so dang cute, I just can't stand it.








