Hello Everyone! It has been a little over 3 months since our last update on Levi.

Medical Update:
We took Levi to the cardiologist and endo. 2 weeks ago. Our cardiologist said that Levi's heart looks like any normal baby his age!!! The hole in his heart went from small/medium to very small. It is not a concern. His calcifications are only left in one spot and are so minuscule! Levi is no longer on any medication (no aspirin). His lab work came back in the normal range and there is no worry for rickets at this time. We have eye, dental, and hearing scheduled for our next round of appointments which won't happen for another 6 months! That's wonderful!

A couple weeks ago we were fortunate enough to travel as a family to San Diego, CA for the first ever GACI Global family meeting. It took place during the Rare Gene Summit. IT. WAS. Amazing. I was able to greet and hug many of the GACI moms that spent time messaging us detailed reports of their interactions with the disorder and treatment options, giving us advice and connections to doctors, and praying for us. These moms have walked the path we started on last September and were beacons of Hope during those rough first months. It was a blessing on so many levels.

We met other kiddos with GACI and watched them race Levi up and down the hall as he crawled and screamed and giggled and smiled. A highlight for me was meeting a young lady my age with GACI . She provided so much insight on what it looks like as an adult with Levi's disorder... since there are so few past adolescence. She was honest and helpful and open.... and most of all HOPE FILLED.... because even though she suffers daily from rickets and other complications, she is living life. She has a job (scanning prenatal ultrasounds even! God had a purpose for her, huh!) and is getting married!! I struggled picturing that for my son... 

We listened to an NIH doctor present on Levi's disorder, the natural history study Levi participated in, and the potential for a new enzyme replacement therapy for ENPP1 (Levi has the ABCC6 mutation or GACI Type 2). She described her work with another disorder that she watched from gene discovery to treatment distribution. It took 20 years. One of the gene mutations that causes GACI (ENPP1) was discovered in 2003. They are hopeful to provide a treatment to those with GACI that are suffering from rickets and other complications before the 20 year mark of 2023. 
GACI moms spoke about how and why they created the GACI Global advocacy group and presented a slideshow filled with GACI kiddos and honored the babies lost.
It was beautiful.

Seth and I are so happy we went.

(I had to write a little extra on my thoughts and feelings while in California...so...here they are... )

                     THE NOLTE FAMILY TREE
The Nolte Roots:
While we were down in Southern California, Seth had his birthday. We were able to go to the hospital he was born in in La Mesa and take pictures. We drove through towns that his parents grew up in, where his dad gave his life to Christ, and the area his parents were married in... I loved driving around thinking... "this is where the Lord started the Nolte Family Tree. These are Seth's roots... rooted deep in the Lord... because his parents made a commitment to each other and God." I started thinking "I wonder if Don and Lisa knew how vast their YES to Jesus and their YES to each other daily has impacted their family?" No they aren't perfect, but did they always keep their roots firm in the Lord? Yes. I am grateful to them for that.

I love being a Nolte. I love that I was "grafted" into that family tree. Seth and I often tell the kids "We are" statements.
We are Noltes...
Noltes give.
Noltes finish the job.
Noltes dont give up.
Noltes are readers.
Noltes are kind.
Noltes are fair.
Noltes love like Jesus.

I want to make sure that I am extending those roots deep into a firm, solid ground...Where do your roots extend? What are we clinging to when the storms of life come? I want my roots to hold on tight to Jesus so I dont become uprooted in a storm of life...

The Nolte Trunk...
We have a neighbor. His name is Darrin. Darrin has a massive apple tree. It is abundant with apples. Hundreds of apples. We also have an apple tree next to Darrin's fence on our property with... 1 apple ha ha yep... 1 apple. When we asked Darrin about his tree he told us he wasn't getting any fruit from his apple tree for years. One day his mother in law told him to SPANK his apple tree. He did. Sure enough his tree started producing more apples! The tree protected by his fence wasn't experiencing the wind and movement like other trees... the moisture or NUTRUIENTS weren't reaching the branches... so... NO FRUIT.

How many of us are scared of the movements of life (change, trials, hardships, difficulties) or even the spankings of life (consequences, redirection, the word NO, not getting what we want... what we think we deserve...)? What if those things are the only things to show us what we are truly rooted in? Our fruit should show the world what we are rooted in... are things like good relationships, focusing on what we have over what is lost, peace, kind words or actions, trust, or faithfulness the fruit? 

Or does anger spurt out? Frustration? Fear? Blame? 

Also... Darrin did mention he started with a newspaper.... but now has to use a baseball bat to produce fruit.... so... we shouldn't be surprised when difficult times arise... maybe more good fruit just needs to be produced... and your "nutrients" need to get to those branches!


The Fruit...
Don, my father in law, has planted 2 cherry trees at our beloved Family Camp in Montana. Last year he held a cherry picking ceremony of sorts for my nieces and nephews heading to Africa for Missions. It was a neat picture. The grandkids know that Papa likes cherries. The grandkids know Papa loves Jesus. He wants to share this with the next generation. What is important to you to share with the next generation? What lessons or stories? What fruit do you want to produce in this life and give to the people you care about most?

San Diego reminded me how important family and family history is. What our parents, grandparents, and ancestors have experienced is important. What Seth and I experienced with Levi is important for our Nolte Family Tree.... for our kids and grandkids... "Remember when the Lord healed Levi's heart... Lilys head injury... Luke choking on water..." San Diego  reminded me to talk OFTEN about the works of our Amazing Sovereign Gracious Lord. Big things like Levi... and small things in between...
(Lily still reminds me... "Remember when we were in Denver at night and your phone died and dad was gone and we were LOST and we prayed and GOD showed us the Children's Museum and you remembered how to get back to Caitlins!?"  Yes. I do. I dont ever want her or I to forget.) 

Noltes depend on God.
Noltes won't forget His Blessings.

Bold statements. Not meant to be made in a bragging or showy fashion.... just BOLD statements for my kids and grandkids and great grandkids to cling to.... Statements meant to EXTEND the roots that began in San Diego when my father-in-law decided to put his trust in Jesus Christ. 

From looking at back at the Nolte past... enjoying relatives still in the area... and looking forward to the hope celebrated at the GACI family meeting... It was a wonderful trip for our family!

With Love

Kayla