I get knocked down....but I get up again - you are never gonna keep me down!

Old Testament time again. This week we studied Genesis 25-50. I had so much fun reading these chapters. So many great stories and lessons. Here is one that stuck with me throughout the week!

Joseph of Egypt - some would say he deserved a small portion of what he got. You can't be the youngest and taunt the older siblings by telling them they are going to bow down to you and you are going to rule over them. Probably not Joseph's best idea. However, he didn't deserve what his brothers did. One brother, Judah, convinced the others to not kill him. (Have you read Judah's story? I almost died laughing....check out Genesis 38!) He leaves for a bit and comes back to learn that his brothers sold Joseph into slavery.

Joseph is sold to Potiphar. You can see his work ethic and character shine bright during his time as a servant to Potiphar. He rises through the ranks and is given charge of Potiphar's household. Then, Potiphar's wife accuses Joseph of rape and he is thrown in prison. Again, Joseph begins to work and do what his character would have him do. This causes him to rise in the ranks at the prison until the keeper of the prison puts Joseph in charge. It's like everything Joseph tries to do, he succeeds.

He interprets the dreams of the Pharaoh's butler and baker. One of them dies, and one of them gets out of prison. He forgets about Joseph for 2 years until the Pharaoh has strange dreams and the butler remembers Joseph and tells Potiphar about him. In one day, Joseph goes from head prisoner to Vice Pharaoh in one day. (What do you think that looked like?)

The bottom line of Joseph is this: whatever he is, he is the best that he can be at it. Can you say the same thing? I know I have some work to do. I tend to start to feel sorry for myself. I wonder if Joseph did this. What are your thoughts?

Picture taken from the play Joseph and the Techni-Color Dream Coat that my brother-in-law was in. The camel was tired and done!

Old Testament Fun

This semester I am taking a class that covers the first 450ish pages of the Old Testament. Part of my weekly assignments is to post here an idea/thought from that weeks lesson. So, for the next 14ish weeks, I will be posting each Sunday insights and cool things from the Old Testament. If you have any questions, be sure to let me know!! I truly am learning to DELIGHT in the scriptures.

This week our block of Scripture was Genesis 4 - 11. Much of this weeks reading included the story of Noah. He is a descendant from Enoch and is one of the few who chose to follow God. Noah spent his time preaching about Jesus Christ, repentance, and baptism. He warned the people of the coming destruction. Many try to take his life because of this. His message was not received and the world is filled with corruption and violence. 

Noah and his family enter the ark and the rain starts. It rains for 40 days. Everyone living on the earth is destroyed. Then, the earth is flooded for 150 days. Can we talk about this for a minute? Noah and his family were in the boat for a minimum of 190 days. I am one that gets extremely sea sick within seconds of getting on a boat. Just thinking of being on a boat for that many days causes my anxiety level to rise. Many will say that the Lord blessed them, and I am sure that is true. One thing that I have learned on a deeper level recently is that there are some trials we just have to endure. Some of our trials cannot be taken from us. 

When we moved from Anchorage to San Diego, we decided to take the ferry from Haines, Alaska to Bellingham, Washington. It was a 2 day drive to Haines (I get car sick). We boarded our boat, The Colombia, on Monday night and got off the boat in Bellingham Friday morning. I got off the boat every possible chance, including when we stopped in Juno during the middle of the night. To say I was medicated the entire time is an understatement. I did occasionally come out of our cabin room to spend some time with the kids, but I was miserable. The kids had a great time. Playing with other friends (both that came with us and that they met on the boat), watching movies in the movie theater, playing in the game room, doing puzzles, and looking at the beauty from the deck of the boat. What did I do? Sleep! Now maybe you can understand the anxiety that I feel when I think about 190 days on a boat!! 

I wish we knew more of what happened on the boat. I guess that isn't important information for us to know, but I think it would be interesting to hear if one of them was sick the whole time, if they fought over silly things, and if they ever questioned why it was taking so long. I find myself doing that in the middle of my trials. I question the Lord and ask how long I have to keep enduring this specific trial. 

The takeaway from these chapters for me is found in 2 ideas. 1 - we need to heed the words of the Lord's prophet. He speaks what we need to know. I'm sure the people in Noah's time were wishing they would have listened when the rain started. 2 - the Lord keeps his part of the covenants we make with him. We are not perfect in our part, but he is perfect in his. He will always come through. It is His plan and His timing, and even when it is hard, we need to trust in that. He wont forget or choose not to follow through. His timing is just different than ours. One day we will be able to see the entire picture, but for now, we can only see our little puzzle piece.

Delight....

My One Little Word last year was SING. I was able to learn so much about myself and how to value my contribution to the world. I know I didn't post much, however, I was consistent and did complete monthly focus projects centered around my word. 

I am doing the class again this year. The word I chose for 2018 is DELIGHT. I am deliberately choosing to find delight in many places. I will post about it (hopefully a little more) this year and hope you can join me in finding delight in our circumstances.

Putting on the Armor (long post warning)

As I sit here unable to go to church (sitting with a friends daughter so her and her husband can attend church together), I am reflecting on an aha moment I had earlier this week at a lunch with a good friend. The conversation turned to the challenges our kids face.  How they are so different from the challenges that we faced as we were growing up. 

A truth that no one can dispute – the day that our children live in (no matter our circumstance or place in life) is different than the life we lived. I was talking to her about the criticism that I have received about the way that I choose to parent my children.** This is where the aha moment came.  In Ephesians, 6:11, we are told to “put on the WHOLE armour of God, that ye m ay be able to stand against the wiles of the devil.” (Emphasis added) You’ve heard this before, right?  This isn’t new doctrine.  It is my job, as a parent, to make sure my children have the armor of God. However, so many people (myself included) don’t put these two things together.  The armor of God and the changing world. For many years, I was arming my children for the battles that I faced as a child/teenager. It makes sense that with the changing of the world comes the changing of the armor that is needed for the battle. 

Today, the battles that are fought (bother literal and spiritual) are not fought or protected against like the battles that were waged even 5 or 10 years ago. Providing our children armor for battles that were previously fought is setting them up to fail.  I do understand that some of the battles that are faced today are similar to those fought years ago, and we will continue to fight them until the end of time.  Abuse (physical, emotional, sexual, and spiritual) is one that unfortunately will not ever disappear.  I understand that we need to still teach/warn/arm our children for this type of battle.  However, there is a HUGE battle that is fought today that was only seen by prophets 20+ years ago.  The internet provides a unique challenge.  The direction that media has taken is different. The attack on the family has intensified to an unimaginable level.

One example, I remember going to school and hearing swear words. Today, the schools are FILLED with vulgar language.  Hearing my children tell me how uncomfortable makes my mom heart hurt yet rejoice at the same time.  I hurt because they are exposed to this day in and day out.  I rejoice because they are still uncomfortable, which means the armor I am giving them is not letting them become desensitized by what they are hearing. (Before I get comments about homeschooling my kids to avoid this – I have prayed about this.  I feel that right now, for US, the best place for them to be is in school. I will (and have) pulled them out of school and taught them at home because that was what I know as a parent I was supposed to do!)

A quick story about language: We have one young man that we go to church with. He is over 16 years of age and attends the high school we are zoned for.  He is afraid to get his wisdom teeth out because he is terrified of what is going to come out of his mouth while he is under anesthesia.  Not because he is a bad kid with a bad mouth, but he hears so much of it at school that he can’t help but have those words in his thoughts.  This might seem silly to you, but the thought of speaking that way is terrifying to him.

While it is true that we didn’t have to use this armor to fight our battles, we were not sent into this battle alone.  We have a loving Heavenly Father that will guide and help us with this, IF we ask.  It is a scary thing to think about sending our kids out into this world, but with His help, we can arm them adequately. I have talked to so many people that are intimidated by what this job entails, that they don’t know where to start.  I don’t claim to be an expert on parenting, but I do have a bit of experience in this armor department.  When my oldest was 10, he was working on a vocabulary list for homework.  He had to find an image for each of his definition words.  He was searching google images.  He put in a completely INNOCENT word in and a pornographic image showed up.  I remember hearing him slam the computer closed (I was ticked – he’s going to break the computer…I think he wishes he would have broken it) and run upstairs to me in my room.  I was recovering from surgery and was completely unprepared for what happened.  He was 10!!!  He sat on my bed and told me what had happened and that he didn’t know what to do. 

(I’ll pause at this point in the story and tell you that I was not prepared.  The first thing you need to do as a parent is PREPARE for these situations.  They ARE going to happen. Hope and pray that their first response is to come to you and talk to you.)

I 100% relied on the Lord to guide me in this situation.  I am thankful I was living the way I should so I could have guidance with this.  I told him that I was not the “driver of this car ride” that he was now on.  I didn’t see what he saw, but that I was sorry he was put in this position.  I told him we could sing a Primary song, read a scripture, pray, talk about how he felt, do all of them, or do nothing.  It was up to him. I would support him in anything he chose to do. He chose to sing a primary song and say a prayer.  It’s been 4 years since this happened and there are times that I still hear him humming this primary song. (We picked a less popular one because I didn’t want the song to be a trigger for his memory.) I know that he is using this to combat temptation. For about a year, he would occasionally come to me and talk about how he was feeling and so discouraged that this image was never going to leave his mind.  Guess what?  This image will NEVER be erased from his mind. Never.  While that is so hard to grasp, it is reality and we have dealt with it the best way we know how.

Other than be prepared, here is my #1 piece of advice – CREATE a relationship with your kids.  With other people’s kids.  With your nieces and nephews.  BE the person that they will come to. This isn’t the only situation where I have learned that the relationship that I created with my kids is the most important thing that I can do to provide them armor.  They know that NO MATTER WHAT, they can come to me. I will not judge, nor criticize.  I will always be their safe place, their excuse to friends, and their biggest cheerleader. More than once I have had one of my boys text me asking me to call them and tell them I needed them home.  Nothing makes me happier. I know we don’t want our kids in those situations, but guess what? They WILL be in those situations. Do they know they can call you and ask for help? When I was a teenager, I didn’t feel I could go to my parents, so I turned to my Young Women’s Leaders. (See – it’s not just parents). I do realize that my kids are not going to come to me with everything.  I hope they do, but I am a realist. I encourage them to have adults that they trust that they feel they can talk to. John Bytheway calls them his “Board of Directors.” Sometimes kids need to hear the things their parents tell them from other adults. Then parents have a bit of credibility. (It truly does take a village!)

My kid’s friends know that I will be that person. I have spent more than one afternoon or late night talking to friends of my kids and comforting and helping the best I can. If something is discussed that I need to talk to their parents about, they 100% know that I am going to talk to their parents, but guess what? They secretly want that. They trust me enough to know when to go to their parents and know that I only want what’s best for them.

Also, my kids KNOW that I am going to be honest and open with them. When something bad happens, I want them to hear it from me first and be in a situation where they can ask questions and together we can talk about it. This means having some REALLY hard conversations. (Can you say Sandy Hook School shooting?) However, I have learned that kids know this stuff. They hear things and are very observant. I want them to hear it from me and not some kid on the playground. I have the ability to give them the facts. I also stress that they shouldn’t talk about it. They can stand up to someone when they hear things that are incorrect, but I make sure they know that not all parents want their kids knowing things. They know we need to allow other parents the opportunity to control what their kids know, but newsflash, you can’t control what they hear on the playground. At times this is hard.  Explaining to a 4 year old about the Sandy Hood shooting was awful. I wanted to shield her from that horrible truth. However, I am SO glad I did. The next time she was at preschool, one of the other kids was talking about it and saying things that were not true. She did as I taught her and told them that they didn’t have correct information and they needed to talk to their parents about it. (Imagine my 4 year old Maggie saying that – she said exactly that.) It is a hard world we live in and we cannot shelter or keep our kids from the truth.

As I said, I don’t have it figured out, and I am not good all the time. Anxiety and depression are real and extremely limiting. However, I felt very strongly that I needed to share this.  I appreciate the encouragement and sharing of advice from other parents. As I said before – we are truly a village. The only way to get through this is to help and lift one another. Please know – this is not directed and one person. This is just something that came to me and I haven’t been able to move my thoughts beyond this.  The battle is real, but we have what we need to fight it. The key is TO FIGHT!!  Don’t give up because it seems bigger than you can handle!

**Side note – the criticism of others doesn’t bother me.  It just simply exists.  I am completely comfortable with the fact that others don’t parent the same way that I parent, however, I TRY to not criticize other parents for their choices.  I only ask the same in return.  However, the criticism of others will NOT stop me from parenting the way that I KNOW I am supposed to parent my children.  

Follow-up -

I had a whole post written in response to all those who sent negative comments and questions to be regarding fear.  Instead of posting it, I deleted it.  I decided not to engage in the negative banter than would be created if I posted it.  For now, I will just say - please let me raise my kids the way I feel I am directed, and everything will be fine.

On another note - have you seen my eyes?  I posted a picture on Facebook yesterday.  Well, today, the left eye is still bad (if not a little worse) and my right eye is significantly worse.  Here, check it out.

The eye that's more swollen is my left eye.  That's the eye that I had the infection in first.  We are fairly positive that the infection is viral rather than bacterial.  I am doing drops in my eyes, but they have been fairly unsuccessful thus far in doing anything positive.  They have caused me to feel like I have sand in my eyes and they provide instant sharp pains behind my eyes for an hour or so after I put the drops in.

As I laid on the couch this morning with my eyes closed, I thought back on the significant physical pain I have felt over the span of my life.  My first surgery was when I was 7 years old.  I have had several surgeries, given birth to 4 children, and suffered many physical afflictions in the time since I was 7 and remember feeling physical pain.  Here are my thoughts....

Childbirth was painful (as one would expect).  Of the 4 deliveries I had, 2 were (semi) medicated and 2 were done with nothing (only because we learned that the epidural did nothing for me...) As you would expect (or as you already know) childbirth can be pretty excruciating pain.

Kidney stones takes childbirth to a whole different level.  Kidney stones is extremely similar to childbirth without the breaks in-between contractions.  It's constant.  The one great thing about kidney stones in place of childbirth is that once the kidney stone is "delivered" you don't have a tiny human totally dependent on you.  One that only sleeps in 2-3 hour stretches, wants to constantly eat (just remembering the breastfeeding pain makes me queasy), not to mention the physical recovery from childbirth.  Kidney stone recovery is just getting back to your regularly scheduled life.

My current physical challenges with my eye doesn't compare in pain to kidney stones, however, it is completely debilitating.  I really can't do anything.  I don't want to come into contact with people because I wouldn't wish this upon even my worst enemy.  Besides feeling like there is sand in my eye and sharp pains behind my eye, my vision is blurry and it hurts to physically keep my eye open. However, the sand feeling is worse when my eyes are closed. I can't watch a movie, I can't play games on my phone, and I can't browse Pinterest or Facebook.  Those all require my eyes being open. So, I lay on the couch.  Fighting between keeping my eyes closed because it's better for them and open because there's less pain when they're open. So, there you have it!

I am thankful for friends!  Messages, calls, flowers, and help!  My poor husband had to drive kids with me last night because I couldn't really see anything.  Please, be grateful for your eyesight!

Disclaimer: this post was typed mostly with my eyes closed and it was not proofread.  Please do not comment on spelling, grammar, or other mistakes.  Right now - I DON'T CARE!!

Rough days..

I would have been okay living my life without today EVER happening. I was sitting on my bike at the gym waiting for my Sprint class to start. J's name popped up on my phone and I knew I had to take it.

Back up to last Friday when much to my dismay, we discovered we got to pay the price for the kids being back to school. Justin came home with a roaring case of viral pink eye. Saturday morning we got an in-home visit from our {amazing} doctor. He told us to watch it and if it didn't get better in a couple of hours, we would start him on an antibiotic to prevent ocular damage. He cautioned that any type of pain in the eye was something we need to be concerned about because if the ocular nerve was involved, he could lose his vision. We started him that afternoon on an antibiotic ointment  and woke up Sunday to a worsening case. We received another in-home visit from the doctor after church (Justin got to skip church) and we increased the frequency of the antibiotic application. Monday he stayed pretty consistent. No improvement, but it didn't get worse. 

Back to this morning, where I was anxiously awaiting the start of my Sprint class. I answered Justin's call and heard him in tears on the other end of the line. He said he was in pain and needed me to get him. My anxiety shot through the roof. Of all my kids, Justin has the highest tolerance for pain. Playing football and now baseball has given him the ability to withstand quite a bit. So, to have him in tears was terrifying. I sent a text to our doctor and immediately left to pick Justin up. Our doctor told me to take him in. So, I made it from the gym to the base and checked in (with Justin in tow) in less than 30 minutes. {I may or may not have broken a speed limit or two!} 

It was confirmed that he had gotten worse. Labs and a CT scan were ordered and off we went. I think my super strong kid has PTSD from allergy shots because he hates needles. first up was a CT scan (with contrast) that included an IV drip. Next up we're labs. He smashed my hand while the needle was placed. Labs were completed and, bandage applied so he could finally breathe. Only to be told that the lab tech missed one of the labs and they needed another vile. I literally laughed out loud. So, they unwrapped the IV arm and stuck it again for the last vile of labs. I will forever be grateful that he was given the all clear. No ocular infection and no underlying infection in the body. We are trying a different antibiotic and hoping that he will get better. 

A few things that I have learned today - fear is real and can not (and should not) be ignored. I was so scared for him that he would lose his vision. Just when things are going so well and his dreams were coming true, he was in jeopardy of losing it., I was terrified that he would have to have a new normal. I am thankful for two very dear friends that tried talking me off the ledge that I was on. They weren't very successful, and really they knew they wouldn't be, but they loved me enough to try. To those two - thank you! I love you! I know that if we were facing a new normal, we would not be alone. However, I am grateful that we don't have to learn a new normal.

I also learned that it is important to let our kids occasionally see us be afraid. He mentioned that he was comforted because I was afraid. He laughed that he thought I was more afraid than he was. There is a right time for them to know that we feel all of the same things that they feel. He found so much comfort in my fears. 

Tonight, as I take time to reflect and write in my journal, I learned that I need to take more time to reflect on my fears, blessings, and take inventory of where I stand. I sure love this kid!!

My land...

"And I, Nephi, did build a temple; and I did construct it after the manner of the temple of Solomon save it were not built of so man precious things; for they were not to be found upon the land, wherefore, it could not be built like unto Solomon's temple. But the manner of the construction was like unto the temple of Solomon; and the workmanship therof was exceedingly fine."

-2 Nephi 5:16-

Whether or not you believe in the Book of Mormon, this scripture ABSOLUTELY can apply to you. 

At first this can be a confusing scripture.  Nephi has broken off from his wicked brothers.  His people are establishing their homes and way of life.  Nephi tells us that they built a temple.  It was like Solomon's, except it wasn't, except it was, except it wasn't, and they liked it. Uh, okay.  

Upon closer inspection, we find that Nephi is telling us that he built a temple like the one that Solomon built.  It would have been better, as good as Solomon's, if they had been in a different place with different materials, but other than the materials - it was just like Solomon's.  

What is the significance behind it being just like Solomon's Temple?  In the Bible, there are exact directions for the temple.  Measurements, colors, trimmings, and materials to use.  Nephi, wanting to make a temple pleasing to the Lord, built according to these directions as closely as he could.

What does this mean for us?  We may not find ourselves on the land that we expected.  We may have hoped or planned for better circumstances, money, or even relationships. However, just because we may find ourselves in a different situation than we planned, we can still do/be something great.  Our specific faith aside, we all face life with all the twists and turns.  Things change and we can make ourselves adaptable and still create something great.  

Our challenge is just that: create something great.  Something that is "exceedingly fine" and pleasing to us.  There are few things in life that we can control, but we can control our attitude and how we respond to the things that happen to us in life.  My friends, please be happy!

He's Concentrated Awesome!! {Nate}

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!

To those who speak out against the church, or those who struggle!

I recently read a post here. Articles like this make me very upset. I absolutely support an individuals right to study, investigate, pray and reach THEIR own conclusion.  What I do NOT support is the writing of opinion as truth to spread lies and provide false truths to those who are on their own search for truth.  

The church doesn't buy property just to get wealthy.  They build temples, churches, and other facilities to provide places of worship and assistance (or refuge), for the poor as well as the wealthy. They send quick aid to places that have been devastated by disaster.  The "poor" as she points out pay tithing and fast offerings, are blessed for doing so, AND they are not forced.  They do so willingly.  

Do NOT assume, for even one minute, that members of this church are blindly following in order to be guaranteed a spot in Heaven.  I am educated.  I am my own person and have an obligation to seek confirmation of the church and it's teachings!!  I will concede that many blindly follow the leaders, or are members of the church based on what they can get from the church.  However, that is not encouraged within our church.  EVERY member of The Church of Jesus Christ of Latter-Day Saints has an obligation to study, ponder, pray, and fast about what we ready in the scriptures, what the prophets teach us, and what we hear others say.  The Holy Ghost will testify of the truth.  

There will be times when we don't understand the answer.  There will be things we don't understand or aren't supposed to know.  I have received MY OWN witness that this is okay.  There are many that are unsure of what they think and feel or aren't strong enough to stand on their own b beliefs against the storms of the world.  Articles like the one I referenced above, that are based on opinion and not fact, do a grave disservice to those people.  If you are one of these people, I implore you to stick to fact and not what disgruntled prior members of the church.  There are  millions of members of this church that are willing to testify of their knowledge and to help you to gain YOUR OWN testimony.  Not the opinion or testimony of someone else.  We are not alone and we are not comfortless.

This isn't to say that our lives are easy.  If you only knew the half of what the last 3 1/2 years have been like, you would understand that easy is the antonym of my life.  However, I am not alone nor have I been left comfortless.  Did you read my blog about my word of the year?  (If not, you can find it here.)  Also, did you listen to Elder Holland's talk this last conference?  (You can find it here.)  I can easily argue that this was a DIRECT answer to my prayers.  I posted about singing my song months before this conference.  I went into this last conference with questions related to my word Sing, and they were answer.  In both obvious as well as hidden ways.  Ways that my heart (with help from the Spirit) were able to make clear and testify of.  It's these moments that make the difficulties and challenges we face SEEM smaller and more insignificant.  In actuality, are they smaller?  No. We have just been made stronger in Heavenly Aid which makes the burdens seem lighter.  

Stay steadfast my friends.  We are not alone.  We have been given much in this life to celebrate.  We have a church with perfect doctrine led by imperfect beings.  Was Moses perfect?  No, he questioned the Lord's choice in him because of his slow speech.  Was Peter perfect?  No, he denied the Lord three times.  Our prophets, apostles, and leaders of this church ARE going to make mistakes, and we need to allow them the grace of the Atonement to right their wrongs, just as we do in our imperfect state.  If you are struggling and need help, please find a way to reach out to me.  I will do what is within my power to strengthen, uplift, and empower you.  We are all here to help each other!