The List

I woke up this morning with my little guy on my mind. Mostly because he was in the other room - ready to be up for the morning. The other reason was a phone call from the Geneticist yesterday. Many of you know Gavin has an "extra variable" on his first chromosome. In order to know if it would be a future problem, Jason and I got tested. Turns out, I am the carrier of the "extra variable" too. In simple terms it means that we are both a little extra awesome. This variable has nothing to do with the "problem list" that Gavin has had to endure. It is just a part of our genetic make-up...lots of people have this extra variable, so maybe we aren't the only extra special ones out there.

That got me thinking of his problem list. Which got me thinking of the ways God has provided. Out of that, I felt the need to praise the Lord with you all. So here goes - his "problem list" and the huge ANSWERS that God has given us!

"Problem List:"
Premature baby. He is still on the small side (5%), but he is growing, and excelling intellectually.
Esphagus not attached to Stomach. Repaired on day of life two. Besides needing to cut his food up very small, he is doing well!!!
Ineffective Thermoregulation. He doesn't have this problem anymore! 
Congenital Anomaly of Spine. Will be repaired on November 4th! Prayers for this!!!
Scalp Cyst. (Spina Bifida). Removed the cyst with a successful surgery! Follow-up MRI March 2015 to see if the hole in Gavin's skull has closed - prayers for that too!
Heart Murmur. Ruled out any structural problems in July of this year. Should grow out of this.
Congenital Anomaly of Ear. Nothing needs to be done with it - just adds to his cuteness.
Port-wine Birthmark on left leg. Ruled out any vein anomalies. Besides being asked frequently if it is a rash, it is doing great!
Tethered Spinal Cord. Cord released May 2013. Doing great! There is still fluid on the spine, but we are praying that it will go away on its own! Follow-up MRI March 2015.
Urinary Tract Infection. Had one during NICU stay, no more since!
Seizures. He is off his seizure meds, and we are praying he stays seizure free!
Multiple bouts of Pneumonia. God was with him each time. It was never easy, but he was such a strong kid. Praying this winter is pneumonia FREE!
Acid Reflux Disease (GERD). Still has a very acidic stomach, but for the most part tolerates it well! When he was very tiny the reflux was so severe it caused heart rate drops. Now he will throw up sometimes, and have hiccups. Overall - doing well!

From this: December 16, 2012

To this: October 18, 2014

Praising the Lord today!

God, Genetics, and a blessed heart

I wrote this on Monday after Gavin's appointments.

Today I am weary. 

My bones ache, and my feet drag as though they are going through 6 inches of mud. 

Part lack of sleep (18 mo. kidlet teething with an ear infection). Part due to being emotionally drained.

Thankfully God's love is relentless, and has gotten us through. 

Today I faced the most dreaded appointment - Genetics.

Before Gavin was born they knew he had multiple medical complications, and right after he was born they attempted to get a blood sample from his umbilical cord. The test didn't work properly, and since Gavin had a blood transfusion we weren't able to try again until after we left the NICU.

Here we sit - well over a year has passed and I am finally doing it.

Sitting outside the hospital doors, I contemplated leaving.
Heading home.
Content to live in mystery.

I watched the nurses and doctors come and go. Some on their breaks, others having put in countless hours - in much need of a place to rest.

Patients, moms, dads, siblings - all wandering by. Some were talking. Others looked like they were all too familiar with this place.

I sat their, remembering weary days past. Days that threatened to consume me - to defeat me - to bring into question all that I once knew.

Ever have those moments were everything you see brings emotions? The wind on your face seems to be too much, and a tear falls. This was one of those moments.

A mother, pushing her son (not much older than 10) passed by us. In that moment, time began to freeze. The boy slowly looked up - our eyes met. He clearly was battling for his life - cancer.
The look he gave. I don't think I will ever be able to wipe his look from my mind - not a look of pain, or pity. It was a look of self-consciousness - he probably didn't see himself as the strong boy he once was. Perhaps he would rather have been walking with his friends, instead of being pushed by his mom. He may have seen himself as weak.

I saw a hero.

Then and there I forgot why we were there. I stopped and prayed.

To a passer-by, I probably looked like I was daydreaming. I didn't bow my head - my eyes weren't closed - my mouth didn't utter a word. I just silently prayed in my heart for healing for this sweet boy - I prayed for his brave mom, who stands by his side though the waves keep crashing in on them.

When I finished I looked over at Gavin and he said "Amen" - AMEN - Aaaaaaaammenn. Something he recently learned, but he had no reason to believe I had just prayed. Tears filled my eyes as I said "that's right buddy - AMEN!"

You see - the spirit moves sometimes. Ok - not just sometimes...He is ALWAYS moving, I am just trying to move on my own, and am too busy to notice. This may be little in the grand scheme, but it was enough to make me stop and notice Him moving.

That was my sign - we were going to be okay. I made my way for the big revolving door, up the elevator and into a room where we waited for our Geneticist to arrive. We were asked questions about my side - Jason's side. Grandparents, aunts, uncles, cousins, great-aunts and uncles. They covered it all. Much to my delight - she wasn't scary at all! For some reason I had her pictured as a "doom and gloom" kind of person. She was very interested in Gavin's unique little "deformities". Some of the things she got super excited over since she hadn't seen one for a while - if ever...grrreeat! :) I still don't know what to think of that. For now we will take it as a compliment.

In my attempts to not bore you - I will just say that she didn't find anything that was an immediate concern. We did a blood sample that we will get results on in 6 weeks. Until then, we just praise God for our little miracle.
Many of you don't know this, but I hemorrhaged at 6 weeks. We thought we were going to lose him. There is now a "theory" that could actually explain how/why the main deformities happened. Basically when the hemorrhage happened, it cut off some blood supply to Gavin - possible reason for it all? Maybe.

I choose to think that God knew exactly what He was doing with Gavin. He blessed us with being his parents and I don't think that any of this was just "random". There are probably many medical explanations for it, but I don't need them. I know he is mine, he was created by God almighty, and I will love him all of the days I am here on earth.

How could you not?