Fixin’ My Melon – Baby Isaiah Update

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Isaiah during his stay at the Wolfson Children’s Hospital NICU.
For those of you who are new to our website and blog, welcome! Maybe you heard about us from a friend, or maybe you saw the special on CBS. Either way, we’re thrilled you’re here and encourage you to look around!

It’s been a busy few weeks in the Tesori house! We, of course, want to catch you up on all things Isaiah… but first wanted to share with you the inspiration for this particular bible verse accompanying this blog. On Tuesday morning, I received this text, bright and early, from my friend Angie:

Thinking about you this morning
as I do my quiet time. Reading Matthew 11
and thinking about when Jesus said “my yoke
is easy and my burden is light”.
Besides you guys, only our Lord can fathom
what you and Paul are going through. So thankful
for your strong marriage and better yet,
relationship with the Lord. He will
see you through. He protects his children.
He will protect Isaiah. Praying for all
of you. Love you so much.

I can’t tell you all how much we needed that text this week and how soothing it was for my soul. As always, God’s timing is perfect. And He has brought some of the most amazing people into our lives, dear friends who are so encouraging in the Word, friends we admire and look up to, friendships we cherish, friends who are much more like who we want to become! More on this text in a minute…

Isaiah’s a busy little guy. He continues with his therapy and is sitting up on his own… for about 15 seconds. Then at some point, one of those little muscles kicks into extension and he flails backwards! HA! We continue to work on it with Kris at Hope Haven and here at home with a bunch of fun “intentional” play with Mommy and Daddy.  He started swim lessons last week and he’s hysterical. We go to a “Mommy & Me” class with Meg and baby Eli. Isaiah is not only the youngest in the class, he’s the youngest in the entire swim program this year, and he’s a hoot. He doesn’t seem to be phased by much, including the mandatory “Mommy dunking” required for all participants. Much like the title suggests, Mommy must dunk baby underwater. Most babies freak out. (All Mommies freak out). I will try to capture a photo of Isaiah’s experience one of these days. No crying, o f course. Just wide-eyed, with water dripping off those super long eyelashes. He doesn’t seem to mind, and he’s getting more adventurous in the water every day. He’s still super little to be doing anything overly exciting, but it’s fun to see him grab the wall and stay underwater longer. Today he “swam” (floated with momentum from a push!) underwater for about 3 (agonizingly long for Mommy!) feet and I realized he was even opening his eyes underwater. Nothing bothers this kid. Stressful for the Mamas in the group to see their little ones underwater, but all the kiddos are tough! Onto his medical update…

Late last week Isaiah had his regular check-up with Dr. Perszyk, his geneticist that you’ve probably heard us refer to time and time again. He’s truly a blessing to our little guy, and part of our “dream team” of medical geniuses/angels who are tasked with monitoring and treating our special little boy.  At the appointment, we got some new information on Isaiah. Here are some highlights:

Leukemia Test:
While we knew this was coming at some point, I don’t think either of us expected to be so overwhelmed by this test. Turns out getting a CBC (Complete Blood Count) on an infant isn’t so easy – not surprising when you think about it… consider how large needles are for a standard adult blood draw, then think about how small little baby veins are, and consider that they need the needle to be big enough to draw quickly so they don’t do any damage to the vein while your munchkin wiggles around, etc. It’s pretty common for the best nurses in the world to have to give this multiple tries before getting the needle just right, and imagine how pleasant this entire experience is for your little one! You get the picture. It’s not fun, not for anyone. And as hard as that is, the 48 hours or so you wait to hear the results is challenging, but leaves plenty of time for prayer and quiet time.

Thankfully, we have the greatest pediatrician on earth, and on Monday, her team of angels did the draw while she sat holding my hand while I cried and Paul (cried and) paced in the room next door. 🙂 In ONE try. Success. I love these people. In typical Isaiah fashion, he was a trooper, cuddled by Raley, the nurse he adores who squeezed and kissed and hugged and loved him just as we would have if we had been in the room. Paul grabbed him the second it was over… right after he declared he couldn’t believe how much blood they drew out of his sweet, tiny little arm! He’s subsequently been instructed that that kind of information is better kept to himself 🙂 Dr. White loved all over him with us, and just like that… done. Now, to wait for the results.

Wednesday morning Dr. White called. ABSOLUTELY NO SIGN of leukemia in our little munchkin! NONE. And his thyroid test, perfect! AMEN to that! They did find a few other things of note in his results, namely that he has a low white blood cell count and low hemoglobin/iron, but just as it would have been should the leukemia test have not been the result we had prayed for, these are all things God can handle. We’re working with his medical team as we speak to find the appropriate next steps to try to get those two levels back to where we need them. That brings us to the next finding at Dr. P’s office…

Fixin’ My Melon:
In addition to his check-up and the ordering of some tests, including the above tests plus a vision test, Dr. Perszyk noted an abnormality with Isaiah’s cute little noggin. Kris, his physical therapist, had mentioned something to us a few weeks ago about needing to keep an eye on which side of his head he leans toward when he sleeps, so we had begun that discussion with Dr. P.

Unfortunately, the problem appears to be a bit more significant than just sleeping on the same side. Isaiah has a severe case of something called plagiocephaly, which in layman’s terms means that his little head isn’t shaped the right way. It could be caused by a few things, including repeated pressure to the same side of the head (sleeping with the head turned to one side) but in his case it is possible that his little skull has fused prematurely causing the deformity. Two possible solutions: a helmet that he’d wear 23 hours a day for likely a minimum of 3 months, possibly longer, or if they find the bones of his skull, have in fact, fused, neurosurgery.

Dr. P referred us to a specialist at his UF Health practice here in Jacksonville, and after what felt like an agonizing week of waiting for insurance to approve the initial appointment, Isaiah and I will go in for his consultation with Dr. Spierre this Monday at 9 am.  In the meantime, we’ve been praying together, alone in our quiet times, with Isaiah throughout the day and during his nighttime prayers, and with friends and family.

One of the most incredible things about our friends is their response to news like this: immediately, friends sent up prayers. Next, Bonnie suggested we have a helmet painting party, Kellie suggested all the cool kids wear helmets (she did when she was little!), followed by Ashley who sent us maybe the best link ever: specialty painted helmets by an artist named Paula Strawn – for inspiration should we need the helmet painting party. We’re torn between the aviator helmet (Isaiah’s grandpa Bryan got his pilot’s license many years ago and it was a lifelong dream for him!) or the “Fixin’ My Melon” helmet. C’mon. How can you not smile at that thing?

So that brings me back to the text I received Tuesday morning from Angie. Matthew 11. Tuesday morning, this was the first exchange I had with the outside world. It was about 7 am. I’d been up with Isaiah for a while, had some *ahem* “quiet” time with the Lord, but it was minimal – I typically do my quiet time when Isaiah is asleep and he’s a SUPER early riser! When I got the text, I was feeding Isaiah. I stopped. And I read it to him. And I held him and we prayed. We thanked God for our relationship with Him. I thanked God for Isaiah’s Daddy, and for Angie reminding me how important our strong marriage has been to our lives, and especially with the addition of our very special little boy. I prayed for protection for our son, for a negative leukemia test, for a perfect thyroid, for his head to be ok. I prayed deeply that we would embrace whatever results came our way, and that we would use them to deepen our faith and share it with the world.

I was reminded of something Dowd sent me last week that was so powerful (yes, I’ll be blogging on this in the coming weeks):

If you have surrendered yourself to Christ, your present circumstances that seem
to be pressing so hard against you are the perfect tool in the Father’s hand to chisel
you into shape for eternity. So trust Him and never push away the instrument He is
using, or you will miss the result of His work in your life.

I remember praying that I don’t want to miss the result of God’s work in our lives!!!! How powerful is that? Even in circumstances that seem to be pressing so hard, I am reminded that our little boy is with us, he’s happy (soooooo happy!), he’s incredibly loved, and God has taught us so much and strengthened us as Christians, as spouses, as parents, as friends, all through the miracle of this little boy. I just need to accept whatever tool He’s using to chisel me into shape!

Lastly, I prayed with Isaiah for our friends. I prayed for Angie and her husband and their sweet little boy. I thanked God that we are surrounded by the most incredible people. I thanked God for the reminder Angie sent: “my yoke is easy and my burden is light”. And that’s our prayer for you this week. That you will learn from Jesus and find rest in your souls. Thank you all for sharing your love and prayers with our family. We are more appreciative than we could ever express!

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