Frustration

What a morning! Zach had a scheduled spinal MRI at the hospital, so unfortunately he was not supposed to eat anything from 6 AM until his MRI at 11AM. As a mom, I was not happy about this, but I guess it needed to be done so that he could have the proper sedation meds. So we rode out the storm of a crying boy all morning.

Once we got to the hospital and started to dialogue with the nurse practitioner, I found out that it had not been communicated to them that Zach had a heart issue. This was a big deal because this entirely changes the sedation procedure. My options at this point were to reschedule for another day (AH!! NO!!) or feed him with the goal of making him sleepy enough that he will lay still for it. (I choose door #2, please!)

Before I could feed him they wanted to get an IV ready for the contrast that would be used during the MRI...4 needle pokes later, they finally were successful with a vein on his ankle bone! At this point, I am not doing too well as a mom. I feel that my entire morning was spent with me asking God, "Oh, please let it work this time!"

After feeding Zach, we were finally able to get Zach sleeping for the imaging. He stayed still for most of it, but they were unable to complete the portion of the images where they actually use the contrast. Ug! I am to call the doctor who ordered the MRI later this week to see if the images they obtained will be enough. "Oh, Lord, please let this be enough!"

Oh my...

Good news: Zach's hips seem to be in perfect working order after the ultrasound of them on Monday. (which he hated every minute of, by the way)

Bad news: Zach seems to have a tethered spinal cord. We are scheduling a spinal MRI and then meeting with a pediatric neurosurgeon for, yes, possible surgery near his tailbone to release what is tethered.

*sigh*

Swaddle me for Your sake, Dear God

Dear Zachary,

When Daddy and Mommy swaddle you, Zach we remember how we are swaddled with the promises of hope and love we read in the scriptures. The Lord provides us guidance and protection when we follow Him obediently. This does not mean that we will not go through trials and challenges in life, but we can be assured that they are working together for our good. Sufferings like pain, sickness, injury, disease, and loss will refine our faith, and we must endure and persevere in hope and trust Him all the more! He guides and provides for the sake of His honor, and in Him there is unequivocal power and victory over fallenness in this world and shortcomings we have in ourselves.

Zach, Daddy is going to start to read Psalm 23 to you to help the eloquent words resonate in our minds and shine in our lives. Jesus is the good shepherd, Zach and in His care we do not lack. For it is by His love that there are the green pastures and still waters of restful security in Him. His provision of hope and love for us restores our soul, and we should continue to rest in Him comfortably. We can then feel liberated from the bondage of despair we sometimes feel in life. He will guide us down the right path that leads us to the other side. Even the darkest shadow of death which frightens us with feelings of helplessness is weak in the face of the hope we have in the security of our union with Jesus Christ, our Lord! Death is merely a door leading to eternity with Him! What a hope to remember!!

Zachary Paul, we are seeing these truths tangibly in our lives! Do you see it, Zach? Do you feel it, Zach?! Of course!! Family, friends, coworkers, and even people we have not met have loved us tremendously in these days. People have loved us with kind words and encouragement, letters, cards, hugs, prayers, meals, and other kinds of help, too numerous to count. Oh, how we are grateful for this love. How do we show gratitude for God's provision of putting so many loving people into our lives, Zach? We ourselves aim to be loving people and strive to swaddle others with love just as God first loved us. We do this for Jesus's sake, and give Him all glory for how He has truly blessed us.

Love,

Daddy

Another doctor appointment

Last week on Monday we learned that Zach has mild to moderate hearing loss in his left ear, but his right ear is normal. This seems like such a minor thing compared to Zach's other issues.

On Wednesday, we went to the pediatrician for his one month check up and Zach weighed in at a hefty 7 lbs. 2 ozs! Way to grow, my little man! That puts us officially at the 3rd percentile on the growth charts! The pediatrician was concerned, though, about a click in his hip, so just when I thought we were already seeing as many medical professionals as possible, we are now meeting with the orthopedist. We will be getting an ultrasound of the hip on Monday to see if Zach will need to be fitted with a brace to make sure that his hip is growing correctly.

Just yesterday we had our first time with Physical Therapy. Zach has a tendency to favor leaning his head in one direction when laying down, so we worked on what to do to stretch his neck out. We also are focusing on reducing his back arching.

I look at my calendar for next week and I have an appointment with Zach every day next week! It feels like I am always running with Zach from one appointment to the next...this is my life now, and I need to remind myself that these times are good times to get to know Zach better. It does get tiring, though, when I just want to stay home.