Month: March 2020

By: Dereck Sammons (A Dad’s Perspective)

As I hugged my son one last time, before Tiffany carried him back to the OR to assist with his sedation for his second eye surgery, I found myself pausing and just starring up at the ceiling asking God to watch over our little man…pleading for Him to make everything go smoothly. I sat in that PACU alone, for the longest 15 minutes of my life, waiting on my wife to return and tell me everything was okay, and that Rowan did great. It’s hard to describe all of the thoughts and emotions that were swimming through my head. Questions like, “Will Rowan be okay with this new form of anesthesia? How will Tiffany cope with having to hold him down through such a traumatizing event?” Varying emotions weaved in between the questions, in particularly, frustration. Being unable to be there for my son and wife in that moment was beyond frustrating. So, when Tiffany finally came back into the PACU, and after she took off her “hazmat” suit, she instantly fell into my arms and cried on my chest as I simultaneously cried on her shoulder. This to me is what pure, raw emotion would look like if it were caught on camera.

We proceeded to the waiting room and grabbed some snacks as we prepared to settle in for our long wait. It’s agonizing waiting for a plastic pager to go off to provide you an update on your son’s surgical status, but we’ve learned to distract ourselves as best we can. So, we played connect four in an effort to keep our minds busy and from going over a list of worst-case scenarios. Forty-five minutes soon turned into an hour. An hour to 90-minutes. Then, 90-minutes crept closer to two hours and two hours to two and half hours…At this point, we were no longer capable of distracting ourselves and panic set in. What was happening in that OR room? We continued our wait trying so hard to remain strong for the other.

Rowan’s surgeon, Dr. Traboulsi, finally surfaced from the OR and said, “Let’s have a seat.” Instantly, my heart dropped to the pit of my stomach. He proceeded to say that the surgery was ultimately a success, however, there was a lot more scar tissue than anticipated so an oculoplastic surgeon was brought in to assist. He finished up the conversation saying we would be able to see our son soon. Relief quickly overcame us and pushed away the panic!

Knowing Rowan was in recovery, and we’d soon get to see him, Tiffany decided to run a quick errand inside the hospital. With as many trips as we make to The Cleveland Clinic, we saw a flyer for a bundle parking deal, so she went to ask the receptionist for more details. In the three minutes she was gone, Dr. Traboulsi came back out…He told me Ro wasn’t coming out of anesthesia like he should be, and his oxygen levels were in the low seventies. At this time, Tiffany came around the corner and began to run down the ramp–she could tell from the look on my face something wasn’t right. Helplessness now replaced the temporary relief we had felt as we began the waiting game all over again. Another forty-five minutes went by before we were finally able to see our little warrior–and what we saw broke our hearts. There Rowan laid, covered in leads and monitors with an oxygen mask around his face. As a dad, this was easily the hardest thing I have ever seen. It took everything I had to not breakdown on the spot and to continue to be strong for my wife. We placed our hands on our son’s back and just prayed that he would be okay. We sat in that PACU for what felt like a lifetime but, in reality was a little over four hours, and were inevitably admitted into the intermediate pediatric ICU. 

After we got Rowan somewhat situated, I reluctantly left my family to go pack and check out of our hotel. I somehow managed to rearrange all of Rowan’s toys and allergen friendly foods and drinks into our small suitcase to bring back to his hospital room with me. This time gone was unexplainably stressful. I felt like I was rushing to beat the clock before a doctor came to provide an update or something else unexpected happened. But, when I finally made it back, Rowan was awake! However, he was desperately trying to pull off every lead and IV that was attached to him (all he wanted to do was walk and play). Needless to say, keeping a two-and-a-half-year-old confined for twenty-four hours was damn near impossible.

So, what is the emotional toll this has taken on me? Well, to be honest, it really shook me up! But I’ve gained an even bigger appreciation and admiration for what Tiffany does for Rowan on a day-to-day basis. It showed me that even with every ounce of adversity that is thrown Ro’s way, he’ll tackle it with a smile on his face and his infectious new laugh. It showed me that there are much bigger things in life than work and money. This has given me a newfound appreciation for my little family, and I would NOT trade a single day on this journey with them. Everything we have been through, even when shit hits the fan, is easier to overcome when we are together. I am TRULY blessed to have my wife and son to conquer this crazy world with each and every single day.

There are some aspects of this journey I will never get used to and surgery and sedations will always be at the top of that list. They just plain suck with a capital S. With Rowan being MH reactive and not being able to have the gasses that allow you to drift off to sleep calmly before “the show starts” it complicates everything…especially this Mama’s emotions. So let’s dive into this horrific saga of Rowan’s second eye surgery, shall we?…

Hardly any sleep the night before if any…waking up to that insanely early alarm clock going off as a last ditch effort to get him to drink some clear liquids before he couldn’t for hours…that knot in the pit of my stomach getting worse by the second that makes you nauseous…the anxiety and anticipation building as we get around and head out the hotel doors on the way to The Cleveland Clinic…ya know, all the usual feelings…

I loaded him into his car seat holding back the tears and we drove to the hospital. A ten minute drive that seemed never ending with constant reassuring, “it’s ok buddy…” I think those words were more for me than him in that moment if I’m being honest. We arrived and handed our keys to the valet and began our now familiar walk to desk P20 on the second floor. We checked in and signed consents. Then the initial start to the waiting game began. About twenty minutes later they announced our name which instructed us we could then move down to desk M20…the actual surgical waiting room outside the PACU. Before Rowan could even get down to play with all the toys they had awaiting him there, it was time.

As I carried him back to pre-op I searched for familiar faces from last time scanning the hall for his surgeon and anesthesiologist. As we went over all the monotonous questions of recent travel, medical history and allergens I kindly reminded them of his MH reactive status. Something I had been sure to mention several times throughout appointments and scheduling after the last sedation disaster. Well shocker….it once again was not flagged in his chart and his care team was unaware. Here we go again….so the nurse began to explain to me that they would place the IV after he drifted off to sleep from the gas mask…I could continue to play this scenario out but those of you who have read my previous posts all know how this goes. So the next hour was filled with huddles and questions and the chaos of having to re-prep the OR, flushing all the lines and locking up medications to avoid any mistakes. Then finally the anesthesiologist came in. “I know this family!” she exclaimed…finally a familiar face, Dr. Pilar Castro. She was not his anesthesiologist for his first surgery however, she was the one who did his initial consult. One of the most caring souls I have ever met. We have a picture of her with Rowan as an infant. Suddenly our minds were somewhat at ease. Our little man was in good hands.

Next Dr. Traboulsi came into the room, another very familiar face. The infamous surgeon and ophthalmologist we have seen since Rowan was just five months old. Together they collaborated a game plan and things began to move so quickly from there. They decided intubating him would be the safest option given his extensive medical history. Then they decided on a “cocktail” of versed, nitrous, and propofol. They had me give him that syringe full of pink liquid (versed) to get things started and asked which one of us would be joining them in the OR. Ugh…this is one of those tough decisions parents should never have to make. First off, it’s something we both wanted to do yet didn’t want to do at all. All parents want to be there for their child in tough, scary times yet believe me…no parent wants to witness or experience that. Ultimately we decided I would go. So I suited up and followed the team down that long hallway to the OR clinging Rowan tight against my chest. We approached the room and his team headed in with the exception of his surgeon and the two of us. He tied the mask around my face and we followed behind.

This next part is hard to type because in order to write it, I must relive it. I laid him on the table surrounded by people. I did my best to mentally compartmentalize, something I’ve never been good at. I’m not a stranger to the OR. I mean, prior to Rowan I worked for three surgeons. Let me just tell you…it is sooo different when your child is the one on that table. The versed was finally starting to kick in, he was getting loopy. Next they started the nitrous mask. His face turned purple and I could see in his eyes he was scared and trying to fight it but his reflexes were slowly vanishing. It was paralyzing his ability to move. I quickly traded places with a child life specialist to be better positioned in his line of sight. I asked “Is this normal?” far too many times as I watched this all unfold. His chest retracting, his face turning colors, the inability to move…all very normal but so hard to witness. But I remained calm and collected knowing I needed to be Rowan’s rock in that moment–the calm to his storm. The anesthesiologist assured me he wouldn’t remember any of this with the versed so I was quick to ask for a dose as well. She laughed but my request was quickly denied. Now that the nitrous was taking effect it was time to find an IV site. They prepared me for the worst with the numbing agent. “This will be loud and it will sound like a rocket but it won’t hurt him,” she kept saying, but honestly that part was nothing–so much better than they made it out to be. First attempt failed…Rowan is and always has been a hard stick. Time for another rocket and another attempt. He was still trying to move and pull away but his body wouldn’t allow him to effectively at this point. As Dr. Castro tied off his arm to try another vein, a nurse (I assumed at the time) stumbled into the nurse anesthetist. ” Woah, be careful” she said…then it happened again. “Are you ok??,” she asked. Then almost in slow motion she replied “I feel funny…” as she fell right into her as well as the machine providing the nitrous. I fully understand things happen, I do. However in that moment I was beyond frustrated with this girl. Maybe she didn’t eat, maybe she couldn’t handle the site of a toddler on that table, maybe the bright lights of the OR just got to her. I later found out she was a student observing and I am fairly certain she should find a new field but I was thankful she didn’t do it five to ten minutes later when there was a scalpel to our son’s face. The child life specialists kept asking if I was ok as my eyes fixated on her going down. I was fine but she was not. His anesthesiologist was inserting the needle as this played out and thankfully despite this event, she was successful. His surgeon at this point was now tending to this student who was still disoriented. He then traded places with the anesthesiologist and I was assured she would be moved before they began. They were now ready to begin. I along with the two child life specialist exited the OR after Dr.Traboulsi thanked me for being involved. “Not too often do we get to experience having a parent in the OR, you did great…thank you. I will take good care of him, I promise.” Then out I went still composed right up until those doors closed behind me. Then I lost it…so many emotions came streaming down my face in that moment. Time to find Dereck and collect myself while the true waiting game began…

There he was in that empty PACU bay dealing with his own emotions (we will get to his point of view later). I unsuited, lost it all over again as I could see the tears welled up in Dereck’s eyes as well. Then we finally grabbed Rowan’s things and headed to the waiting room for what we hoped would just be forty-five minutes to an hour. Three cups of crappy coffee, endless pacing, and many rounds of connect four later I was starting to panic. It had been an hour and a half…what was taking so long?! Dereck tried to assure me this happened last time but that wasn’t comforting because the delay last time came from countless failed IV attempts…I was there for all that. I knew that wasn’t the hold up. Then the texts began to flood in…”Is he out yet, how did it go?!” The more time that passed, the more texts and calls we received–the more the panic started to grow. Maybe our pager was broken…that would make sense right?!…So Dereck disappeared to go check with the desk…not the case. At this point, two and a half hours had passed for what was supposed to be a forty-five minute procedure. Then finally we received a message on the pager that they were wrapping up and Dr. Traboulsi would be out soon to speak with us. Phew! We could finally breathe…for a moment anyways.

About fifteen more minutes passed and our night in white surgical scrubs came out from around the corner. He had half a smile which was a reassuring sign. “You’re smiling, does that mean good news?” I asked. “Let’s sit down somewhere…” a phrase no parent wants to hear in response. So we did. We found a corner of the waiting room and adjusted chairs to face him. “There were some complications…Rowan had far more scar tissue from the previous surgery than we anticipated. His anatomy inside the eye is also not that of a ‘typical’ child. I completed the procedure and everything was going great…then I went to burry the knots on both sides of the sling, and they wouldn’t stay tucked. I didn’t want to tug or keep trying so for the first time in thirty-five years I called in an oculoplastic surgeon to assist.” My curiosity peaked at this point as I was trying to take this all in, “Did it happen to be Dr. Hwang?”. Indeed it was…this is the surgeon we had originally requested in the beginning of our search but she did not typically deal with pediatrics so we were sent to Dr. Traboulsi and are so glad we found him. Though I was somehow comforted by the fact I knew she had an impressive resume. He went on to explain that she was able to burry the knots effectively and they closed him up. Another brief euphoric moment that was abrupt by the news that followed…”We won’t be able to do this procedure again”, he said. For those of you who don’t know, we have prepared ourselves for the fact that Rowan would need this procedure repeated several times throughout life due to the severity of his ptosis and his face constantly growing and changing shape. Now what?!?! He explained there is just too much scar tissue and hopefully this would hold for as long as possible. We would discuss other options down the line when we crossed that bridge. He went on to say that he pulled the sling as tight as possible this time to get an optimal lift. Though we wouldn’t know how effective it was until they removed the stitch in office at this follow up appointment the next morning (They stitch the eye shut overnight to allow it to begin to heal). Ok…so yes we had just gotten hit with a ton of bricks however, they successfully completed the procedure. “Can we see him then?!” is about all I could get out of my mouth in that moment. “They are waking him up now and will page you shortly.”

Fantastic news! However the minutes following that exchange kept adding up and still no page. I ran up the ramp to ask the lady at the desk a question about parking and my anxiety ramped back up in full force when I saw Dr. Traboulsi sitting with Dereck motioning for me to come back down. Never, ever a good sign…he explained that when they extubated Rowan his oxygen levels plummeted and they were having a hard time getting him to stabilize. There were a lot of scenarios that had played out in my head approaching this surgery and this certainly was not one of them. It’s amazing how quickly all of those major concerns I had fifteen minutes prior just vanished in the blink of an eye when we found out our little man wasn’t able to breathe on his own. I cannot even begin to effectively explain the emotions that came flooding over us in that moment, but I pray none of you reading ever have to experience them.

Another half an hour or so passed and we finally got the page that we could see him. We raced to his room where we found him laying in a crib, still completely knocked out and on eight liters of oxygen at that point. Definitely not our spunky little boy crying and ripping out cords like usual. The next five hours were filled with him very slowly coming out of the effects of anesthesia and weaning off of oxygen. It was emotionally draining. At one point, his nurse disappeared and came back with both arms full of snacks and drinks. She looked at me and said “Honey, I know you haven’t eaten today…I’ve got him for a moment. Eat, you’re shaking.” Those nurses are hard to find. Shortly after that we attempted room air but he continued to desat. We had already given him steroids but nothing seemed to be working for more than short stints. That’s when Dr. Castro came back in. She decided at that time he needed to be admitted (this was supposed to be a same day surgery–two to three hours in the PACU tops). The hospitalist then decided moments later that he needed to be followed by the PICU not just on a general nursing floor. Eventually he was given albuterol treatments which were our saving grace then we were transferred to the floor.

We spent the night in the ICU with very little sleep between his rounds every two hours and the incessant beeping of his oxygen monitor with constant desats…Not to mention the five leads of a heart monitor, BP cuff on one ankle, pulse ox on the opposite foot, IV in the arm complete with arm board and sock cover, and finally a patch over his eye. That’s enough to make any toddler lose their mind. Then we irritated him just a little more with a chest x-ray which thankfully ruled out infection in his lungs but this is Rowan we are talking about and as you all know there is always an incidental finding with any test of his…in this case it was an enlarged heart.

The next day we obviously missed his follow up appointment, but thankfully we received an early morning call from his surgeon. He offered to see him in the hospital after morning clinic to remove the stich holding his eye shut. Only problem was he ripped the patch off five times leading up to that happening. It was a very trying day but thankfully we were discharged that afternoon to finally come home. We still don’t know what caused his breathing complications or enlarged heart but we know his heart is now back down to normal size and he likely has a narrow airway as well as sleep apnea. However, all of the testing to follow up with these concerns have been cancelled until further notice due to COVID-19. This saga is far from finished but props to you if you have read this far. Another post will be coming soon so stay tuned.

I have been hesitant to voice my opinions on this whole COVID-19 pandemic but the more I think about it…I have this platform so why not use it to advocate for those who can’t, the vulnerable. Y’all I get it…we are ALL bored out of our minds. We ALL want our lives to return to some sort of normalcy but here’s the thing, the sooner we all adhere to what is being advised, the quicker that can and will happen.

Things I’ve heard so far….”You’re the problem with America”, “It’s just a cold”, “We have never done this for the flu and it has killed so many more”, “This is just a political scheme”, “This is ridiculous…what about all my bills?”….Guys, I get it! But let’s go over some facts shall we?….First off, can we stop hating each other when we disagree with one another?!?! I mean honestly, that is the actual problem with our country as a whole these days. And to most, about 80% of people it is just a really bad cold or flu…but to the vulnerable it can be life threatening. So for once, can we all just be considerate?! Because your “ONLY” is my “EVERYTHING”. The flu has killed many more but here’s the thing about that, COVID-19 is TWICE as contagious and TWENTY times more deadly. As for politics, I’m not getting into that discussion today, or anytime soon for that matter. And for those of you suffering financially, I totally understand your concerns and frustrations. But that is another reason to be considerate and cautious now so we can all get back on with life sooner rather than later. And this is a time we all need to lean on one another for support. Guys, check on your friends and family. Everyone is being affected differently. Support your small businesses, check on your healthcare workers and first responders, your pregnant friends, elderly and transportation workers. Be there for one another. I mean isn’t that all relationships really are?! Being there for one another when they need you most? (yep, totally stole that from That Awkward Moment–but it’s the truth)

Back to my point of writing this in the first place…the vulnerable (those of you who know me personally know I struggle with staying on topic). So who encompasses this twenty percent? The elderly, those with pre-existing conditions, diabetics, people with kidney diseases, the immunocompromised, pregnant women and unborn babies, and newest to the list–children under five. Y’all our son hits half that damn list! But he’s spunky and resilient so “he’ll be fine, don’t buy into the hype”….Let’s talk about Rowan specifically just regarding this. He is up to 31 diagnosis’ that all fall under his CSS diagnosis. So just regarding this specific virus…He obviously has a pre-existing condition. He has kidney issues on the left side. He is super prone to respiratory virus’ of all things. He is under five and has pulmonary issues…several pulmonary issues. Not only that but he has something called hypotonia along with laryngomalacia which basically means his muscle tone prevents him from coughing up secretions making it insanely hard to fight common colds and respiratory virus, yet alone the motherload of one.

I have not left this house for a week now (aside from a quick chest x-ray to check on a serious cardiac concern for Rowan) since I took him to therapy for the last time til at least May 9th. Cincinnati Children’s Hospital is thankfully taking all necessary precautions to keep our kiddos safe. And guys, I’m losing my ever loving mind! I miss social interaction something fierce. As a stay at home mama I already don’t get much of it as it is. But it’s what we have to do to keep Rowan safe and I’m begging y’all to be considerate of these situations instead of being stuck in a state of mind only worrying about how bored you are or how “you’d be fine.”

Most of you who have followed our journey know that ever since I had Rowan, I’ve had some crazy anxiety. It has definitely calmed down over time but in times like this, it’s cranked on high. I hear the words “only the vulnerable” and I see so many tiny faces. I see Rowan, Kruze, Colton, and Ryan. I see Ruby, Hensley, Jilly, Cohen, King, Kolton, Theo, and Kayenne. I hear the fear and frustration in their parent’s voices when we talk each other through this crazy time. So please just stop and think before you go out unnecessarily because you feel inconvenienced or annoyed. Please consider all the facts for our special needs, “medically complex” kiddos. They are our whole world.

Just when we feel like life is finally starting to slow down, like we can actually catch our breath…. BAM! Life throws us a, “ha, just kidding!” back in our faces. It’s that time of year again, folks–a new year ushering in new challenges, celebrations, deductibles, test results, emotions, surgeries, or simply put, the full gambit that comes with a special needs child. But something is different this year. I’m starting to “get used to” or become “accustomed to” what a new year truly means for my family. I’d love to tell you this newfound normalcy helps my anxiety subside, and to some degree it does, but it’s never far away, luring me back into its cold, unsympathetic clutches.

Getting used to this way of life is something I never imagined I could withstand–holding my son down for IVs and blood draws, pacing in a waiting room for hours on end staring at a board waiting for one single line of digits to change colors, learning how to use MyChart better than the hospital’s IT department, and understanding medical terminology and diagnosis descriptions like the back-of-my-hand. But, that’s where I’m at and I have to be OK with that in order to be the best mama I can for Rowan.

The most frustrating part of our situation is I felt like we were over the hump. I mean, Ro’s walking (and running!) now and surpassing milestones we never knew if he would be capable of doing–to which we have therapy to thank! Therapy has been a HUGE part of our life for so long now it’s become second nature, like brushing our teeth. And then there’s the testing. He’s been tested for so many things now that I thought we were out of things to check-off the list. I predicted we were in this new stage of life–annual follow-ups and progression tracking tests. Needless to say, that “prediction” was more inaccurate than that of an 1-800 Psychic. But I suppose that’s the way life goes–unpredictable. I guess I should know this by now, but apparently my optimism hasn’t completely abandoned me. So, allow me to update you on our most current plot twist…

Last month Rowan had an orthopedic follow up–no biggie. We do this every four-months accompanied by x-rays. Recently we had noticed, along with his Physical Therapist, that his scoliosis (curvature of the spine) was starting to look worse. We thought it was largely due to his balance issues and how he holds himself to walk, but quickly learned that wasn’t the case. His latest x-rays showed an aggressive progression in his scoliosis. His spine has progressed seven degrees in ten short months, placing him at the high end of the moderate scale and creeping towards severe.

You know, I’ve come to learn it is never a good sign when a Specialist skips the Fellow or Resident solo consult and just brings them in at the same time as him. That’s the moment we know our son is about to be integral in a teaching moment–how to give a family bad news 101. Yet another thing I’ve picked up on is reading each of his Doctor’s habits and quirks to prepare myself for what I’m about to hear.

His Spinal Specialist is world renown and has been doing this a VERY LONG time. He knows his stuff and is very conservative with his care plans. So, when he walked in and sat down (which he NEVER does) and says, “it’s time to brace,” it’s a bit of a gut check and completely knocked the wind out of me. Said brace is called a TLSO (thoracolumbosacral orthosis). It’s listed as “a removable body cast” on the website for the orthotic clinic we were sent to. Rowan is required to wear it for–y’all ready for this–18-22 hours a day! Yes, you read that correctly and yes, that includes while sleeping. As if that wasn’t enough news to wrap our brains around in the moment, he continued with: “Your son has a syndrome we know very little about. If he were an adolescent and this was idiopathic (a big word that means no known cause) scoliosis I could tell you exactly how this would play out, but he’s two and it’s neuromuscular. Kids under ten is a whole different beast and your son’s started in infancy. I don’t want to tell you we are flying by the seat of our pants here, but we kind of are. This brace will not correct his curvature but will hopefully stall the progression. And if it doesn’t, we move onto a Mehta cast (a real body cast). And if that doesn’t work, we discuss magic rods at that point (major spinal surgery).” FAN-FREAKING-TASTIC…But wait for it, it didn’t end there. They also found what is known as a butterfly-vertebrae, which is a vertebra near the top of the sternum that didn’t fuse together and doesn’t match up with the other vertebra. Apparently by itself it’s not a huge concern but, accompanied by a syndrome and scoliosis it’s grounds for a total spine MRI to check the spinal fluid and cord for problems. Which brings us to our latest adventure.

As most of you know, Rowan never stops moving and requires very little sleep resulting in MRIs requiring sedation or anesthesia. We were under the impression they were using general anesthesia after the nurse had called two days prior to go over diet restrictions and instructions. Before I hung up the phone, I asked what type of anesthesia we would be using–really just with the intent of finding out if they were using Nembutal (an oral sedation) or IV anesthesia. The nurse answered my question with, “We will put a gas mask on him first to…,” which is when I abruptly cut her off. Rowan is a MH reactive patient, meaning those simple gasses they use in surgery could kill him–and no, that is NOT an exaggeration! So obviously, it’s not something Dereck or I take lightly. The nurse continued by informing me his MH reaction wasn’t flagged in his chart–which is odd considering he was diagnosed over a year ago–so naturally the conversation started to deteriorate. Though I realize mistakes happen, that is one that could have ended in the unfathomable. Nonetheless, we got past the life-ending oversight and were given the option to use an oral sedation. There are several pros and cons to both types of sedation, but the ultimate deciding factor was the Vascular Access Team (VAT) wanted to strap our little man to the bed in order to place the IV. This Mama Bear would have needed a Psychiatrist after witnessing that, so we opted for the oral option–which we would later live to regret. In the hours following his sedation, Ro couldn’t walk for the next twelve hours and was extremely irritable–but hey, at least we will know for next time (insert silver lining here). They assured us we would receive results within 48 hours, but it wasn’t until the 75th hour, and three phone calls later, that we finally got the results. As always with reports, it was written in what seemed like a foreign language, but after a few hours on Google, I got somewhat of an idea of the findings. However, when I eagerly called his Specialist to go over the report and ask my five-million-and-two questions, I was informed he was in India until the following week (which for those of you reading along is an 11-hour time difference). Sigh.

The following week we were off to Rowan’s brace fitting. Unfortunately, Dereck was unable to attend since he had just missed work for an MRI the prior day, so thank goodness for great friends and compassionate nurses. Holding your toddler down to have a plaster mold made is heartbreaking–but with the nurse’s help, and friends who take you out for a drink afterwards, it was bearable. I am definitely not looking forward to repeating this process each time he grows, but thankfully in our case, he grows slowly.

We have a million appointments and tests around the corner and hope we will have good news in store to share soon–ophthalmology and neuromuscular and gastrointestinal, oh my! Life is a journey, especially with our amazing little man. I’d be lying if I said it was easy, but his determination and resilience can and will teach us all so much about overcoming life’s obstacles. So, as I embrace this Medical Mama title I’ve been given, my hope is he crushes all the obstacles lying in wait for him this year just as he’s always done!