The Boston Review

Mack Attack Bracelets

The quick news from Boston is that we are headed back for a full brain surgery in the next month. Macklin's overall clinical picture looks great, but the blood flow in the blood vessels of his brain is higher than what Dr. Orbach would like to see. So, we will return to Boston for another intervention which will take place on 4/26.

After some encouragement from friends who have walked the regular infant surgery journey before, we wanted to create a physical reminder for anyone who would like one to join us in prayer for Mack Attack.  So, we came up with the Mack Attack Bracelet! You can order yours through this Google Form for $1 and wear the bracelet in support of Macklin or as a reminder to pray for him. 

Thank you to everyone who has supported us in this journey. We couldn't do it without you!

The Good and The Confusing

Our trip to Boston overall was great. It brought an amazing peace to our hearts to be among Vein of Galen experts. In Iowa, Macklin was an enigma in many ways and in Boston, every doctor we talked to is paired up and works with most of Dr. Orbach's (a world-renown expert in VOGM) patients. It felt reassuring that the effort to go to Boston was worth it when we were surrounded by people who could easily say, "Oh yeah, I see VOGM babies weekly."

And let us tell you, the effort to get to Boston takes a lot! We are so thankful for Courtney's parents who traveled with us to help lighten the load and babysit Keira while we were at the hospital with appointments. We arrived to the airport with 12 pieces of luggage. It felt like we took half our house, but all was necessary. This was probably the hardest part of the trip -- lugging around all the bags in the airports and up three flights of stairs to move into our little Airbnb for the week. BUT -- it felt great that luggage was the hardest part of the trip!

The Good

We have been wondering about Macklin's condition of pulmonary hypertension (PH) for a long time. There have been mixed reviews on this from many different doctors, so it was an item of question in Boston for the Pediatric Cardiologist. 

The moment the Fellow and Doctor walked into the room, they were confused if they were looking at the right baby. Macklin didn't display any physical labor signs of PH and in their opinion, his Echo didn't show it either. They flat out told us that he did not have PH.

This was SO GOOD to hear. It takes many worries out of the equation and makes surgery and recovery somewhat easier for Macklin too. Now we just have to get Boston and U of Iowa to compare notes and agree on this new revelation!

Another good item was that Macklin successfully underwent anesthesia and an angiogram without any hiccups. He was not a happy camper after he woke up and just wanted to eat, but he recovered quickly and was back to normal the next day!

Other good items from Boston were the family time we got together. We were able to enjoy the Aquarium and Children's Museum, along with some good eats (including cannolis) and exploring of the historical streets with Macklin and Keira and it felt good to do normal family things together amidst the busyness of the week.

The Confusing

Neurologists are confusing. They admit it too. We remember meeting Macklin's neurologists shortly after he was born and they had reviewed his brain imaging. Their first line to us was, "We are terrible at our job because we can never tell you in certainty what is going on or going to happen in the brain." This remains true of all neurologists we meet!

We met with two different neurologists in Boston. One had a developmental focus and the other focused in genetics. Essentially, they said two different things and that's just confusing.

A question about Macklin's make up is if he has low muscle tone or not. Everyone we talk to has a different opinion, some say yes and some say no, so we're at the point where we truly just have to wait and see how he develops to figure out how God has created him.

Being born with low muscle tone typically comes from brain injury while developing in the womb. Macklin was born with an underdeveloped brain, so just like the neurologists said in the beginning, we live within a large spectrum of everything Macklin could or could not be in his life. 

Boston didn't help in this area and just added to the confusion, but that's fine. We know with this one that we need to let Macklin show us who he's going to be. He's already army crawling and cruising, so we live with great hope that he can be as "normal" as possible within his physical capabilities!

The Miracle

After Macklin's procedure, we had time to debrief with Dr. Orbach. We asked him about Macklin's brain imaging and his lack of a right carotid artery which we had only recently discovered wasn't there anymore. Dr. Orbach gave us his best theory on why it no longer shows up on imaging and no longer is functional for Macklin -- and y'all -- it's a freaking miracle this kid is still alive.

It would take forever to type out, so if you want to hear all about it, head over to Instagram and check out Courtney's new profile following and documenting a deeper level of Macklin's journey @VOGMomma. 

Specific Prayer Requests:

  • For a miracle, that when we get to Boston on 4/26 and Dr. Orbach starts with his angiogram to plan his surgical route, he will see that the Vein of Galen no longer exists and complete healing has been restored in Macklin's brain!
  • For patience in the journey of Macklin's development, that we as parents would not live in a world of expectation, but allow him to develop at his own pace and show us who God has made him to be.
    • And -- that Macklin would continue to hit developmental milestones. Specifically, that he would continue to show improvement in his speech and fine motor skills.
  • For endurance -- we as parents are tired. Admittedly, we still haven't recovered mentally/emotionally/physically from this intense journey that started in June and now with these trips to Boston the drain opens up again and anything we stored up will be emptied out.
  • For wisdom -- that our minds can be sharp and we can ask the right questions to understand and continue to advocate the best we can for Macklin as we meet new doctors and providers all the time.




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