Shortly after Dex came home from the NICU, we started feeling a little tremor in his feet, usually while eating a bottle or while asleep. We learned at his 4 month check up that this is called ankle clonus, and while his pediatrician chalked it up to his immature neurological system due to prematurity, she shared that persistent clonus can be an indicator of cerebral palsy. A pediatric neurologist could evaluate him, but the local group is currently on a 6 month wait for a new appointment. So, I asked if we could go ahead and get that process started so that the appointment would be in place when we reached a time that the clonus should be resolved. She agreed, but offered to send us to UVA so that the wait wouldn’t be as long. UVA could see us in September.
Well, over the course of the few weeks after his 4 week appointment, we had Dex under a microscope. Which leg did he just kick with? Why are his arms so tight? He’s so much stiffer than our girls were, this can’t be typical. A therapist evaluating him mentioned him being jerky and high toned, and then it was all we could see. All of these can be because of his prematurity or all of these could be signs of cerebral palsy.
 |
| The girls seeing us off! They were more worried about this trip than when we went to Europe for 12 days. I think it had something to do with that baby. :) |
So much of our joy in this delight of a baby was being robbed. I couldn’t appreciate how strong our little fighter is because I just worried he was too strong. So at the advice of my aunt who is a wonderful physician, we contacted Cincinnati Children’s to see how quickly he could be evaluated. And it was days. It was also so comforting that CCH has a world class pediatric neurology department (currently ranked #2 in the US), and so we knew Dex would be in great hands. So, we decided to make the trip to Cincy.
Which brings us to yesterday. This one day epitomizes the journey we have had over the last nine months— a day and a burden that feels crushing and yet it is made lighter by the absolute kindness of others. People are good. And they want to help. And it feels crazy and so appreciated. So Cliff's Notes version, a spouse of Sam’s coworker knew a pilot who flies for Angel Flight, and they reached out and offered to fly us privately to Cincinnati for Dex’s appointment. Did your jaw just drop? Ours did. We were planning to drive the 14 hour round trip over the course of a weekend or few days. Now, here was someone using their time and resources to bear the travel and cost load for us. No more hotel over multiple days, no more extensive childcare worked out for our girls--we could be to Cincinnati in an hour and come back that same day.
I am an apprehensive flyer, but knew that this would make the trip so much more bearable for Dex, especially with him still doing so well off of oxygen. But, as we pulled in to the parking lot by the hangar to board our plane, I almost lost my nerve. Sam got so much entertainment out of anxiety due to the itty, bitty plane and the horrible weather. Thunderstorms and rain littered most of the morning. He may have been most amused by the last will and testament video I sent my sister after this plea.
I hope to take this boy on half the adventures he's already surprised me with. But, by the absolute grace of God, that minivan with a propeller was not our plane. BLESS. And our takeoff time of 11:00 a.m. provided the only break in rain for hours. All my fears dissipated when we walked into the hangar to meet our generous pilot Tom and copilot George and saw a beautiful, shiny, brand new plane. It is likely the only pressurized plane in Angel Flight's fleet (which made all the difference in determining Dex's flight worthiness), and boy it was beautiful. When we boarded, it smelled like a new car, and Tom gave us an easy, one hour flight that was smoother than any commercial flight and landed right into Lunken Field with a private Waypoint Aviation terminal that looked like a swanky hotel lobby.
Dex took his very first flight, and then hopped in to his very first Uber. We were dropped off in front of Cincinnati Children's Hospital about 20 minutes later, and were all checked in to his appointment. I can't say enough how grateful I am that we decided to come.
For the last three weeks, my biggest dream was to go to Cincinnati and have Dr. Vawter-Lee say that she hoped we got zoo tickets or something because there was no reason he needed to be seen. She didn't say that. But, her assessment of him felt pretty darn close. Dex brought his A game to the appointment. I almost didn't recognize him! She was not able to elicit clonus in either foot (something the pediatrician was able to do easily in June), all of his other reflexes looked normal, she was pleased with his muscle tone, and only made note of the tightness in his right arm. She wasn't overly concerned with his Grade 1 brain bleeds, but agreed that an MRI may be needed if his right arm didn't respond to the recommended physical therapy as it could potentially be affecting by CP. Otherwise, she said our baby looked great. He was seen just 6 days before by another provider noted how high his muscle tone is. With a week of us stretching him at home, she said his tone looked really good. At first, she had concerns with him already rolling over (he is ahead of the game on that by every measure-- his chronological age or his adjusted age). Cerebral palsy babies often roll extremely early because of spasticity. But, as she laid him on his belly, he popped his head up like the sweetest baby cobra you've ever seen, looked around, pushed his arms out, and rolled over, and her jaw dropped. She explained that CP babies often do a "log roll" with very little head lifting, but with a big arching of back and flipping over. He pushes himself over with his head and arms. And maybe a little help from those ears. :) She said it was probably all his time on my chest in the NICU and some added neck strength from trying to avoid his severe reflux.
She shared that he is at a greater risk for mild developmental delay because of his Grade 1 bleeds and also because of his extended oxygen requirement. BUT NOT SEVERE. While she still had concerns about his right arm, she said his other limbs look great, so we will follow up in three months.
Dr. Vawter-Lee encouraged us to always seek answers for our little guy, not just accept "oh, it's because he's a preemie," even if that may very well be why. Stuff gets missed that way. (I think Sam may have laughed in his head and said, "Have you met my wife? Crazy mama bear extraordinaire?) She left the room and I cried putting our little guy back in his carrier. Another miracle over my little boy. Of course, as soon as we left the building to get in our Uber, I saw that his foot was tremoring in his sleep. THAT BOY. I know our battles for him and with him aren't over, but I am writing this post as a reminder to myself. When I am most afraid for my baby, when I'm reading medical journals at 2:30 a.m., when I am discouraged by the odds he faces, this is my reminder that my little "man of prayer" is a mighty warrior and the Lord has big plans for him.
By 7:30 that evening, we were safely back at our car at the Roanoke Airport. What a day. A day full of blessing and grace for our family.
