Shipping Off to Boston

 3/9/23

Join the Journey on Instagram

Courtney has started a profile to more intimately and actively follow Mack's journey, even in the day-to-day. If you want to follow along, you can do so on Instagram @VOGMomma.

It's Been A While

Hey everyone! We looked back at the last blog and saw that it was on November 17 -- wow! It truly has been a while since we've updated everyone on Mack Attack, but as we said in the last post, no news is good news.

For the past four months Macklin has been working on growing and developing. A majority of his checkups have been with physical therapy, tracking his skills to ensure he is on pace. We're humbled to report that so far, Macklin is on pace like any "normal" child (with a few things to keep working on). This is a huge answer to prayer. At birth we were given a spectrum from "he may not walk or talk" to "he could be a normal guy". It's hard to live in a large spectrum like that, waiting every day to see who Macklin is going to turn out to be.

In our last meeting with Mack's Neurologist, we were able to compare his brain imaging from when he was born to now. It was amazing to see how much brain development had occurred in Mack and how it has even "remodeled" itself in some areas. It's truly a miracle to watch Macklin grow and thrive.

We're not out of the woods yet, but the indicators look good that Mack is developing past some of the scary conditions that we once thought he may end up having.

Beyond development, Macklin continues to get a host of tests and pricks all the time -- echos, blood draws, shots, medication adjustments, and more. He's the happiest camper through it all too.

Lately

Macklin has just started to army crawl all over the house. He has a beautiful curiosity about him and he's always finding new items to get into. He also just started obtaining the power to sit to stand (assisted) and even start cruising a little bit holding tight to furniture or people. He's full of smiles and cackles and LOVES his big sister.

We've had a couple trips back to Iowa City for further testing and monitoring, and we also see doctors here in Des Moines as well. Throughout all of this, we've been in contact with Dr. Orbach (expert on Vein of Galen Malformation) in Boston. It was during a Zoom call that he asked us if we could come out to Boston to do a full gamut of testing. With Macklin's case being "complex", he wanted to have all his own testing done and figure out some missing pieces. We said, "Of course!" and within a week had a trip planned to Boston for five days of testing and check-ins with the Vein of Galen team at Boston Children's Hospital.

What's Ahead in Boston?

We arrived in Boston yesterday (the kids did great, the parents barely survived) and were able to enjoy the city today together along with Courtney's parents who came along to help us out this week. Tomorrow, Macklin starts his testing with an EEG, EKG, and Echo. We'll take the weekend off and then get into some invasive tests next week.

We are thankful for this trip and the opportunity to meet the team and Dr. Orbach at Boston Children's, yet it brings back so many of the "feels" as we start to hook Macklin back up to machines and watch him get carted away with people we don't know. It doesn't seem real that Mack Attack has to keep going through this type of stuff when he is such a chill and happy baby at home. You'd never know he had a rare condition that threatens his life.

Once again, the thing we need most during this week is your prayers. Prayers are what got us through the first week of talking life and death scenarios, and then the three brain surgeries for Macklin with a 50/50 risk-reward, and then to a path of coming home with no tubes or wires. God has sustained us, He has heard us, and prayers have been the weapon. 

Thank you everyone for continuing to love, follow, and pray for Macklin!

1 John 5:14, "And this is the confidence that we have toward Him, that if we ask anything according to His will he hears us."

Specific Prayer Requests:

  • For a miracle, that these new tests will be jaw-dropping to the Boston team because all signs of the Vein of Galen will be gone.
  • For new beginnings, that navigating a new hospital and new doctors and a new city will go seamlessly. That God will lead us into new relationships that "feel like home".
  • For flawless procedures, that all of the pokes and prods and wires and tubes and procedures that Mack needs to go through are perfectly done with no risk or harm to him. And that they give Dr. Orbach everything he needs to be fully informed with an action plan for Macklin going forward.
  • For Macklin, as these days will mess with his routine. He will not be allowed to nap or eat and be put under sedation, and messed with constantly. Please pray that he can navigate it with joy and recover quickly from any disruptions.










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