Happy New Year to you and yours! What a year it was for us, full of both joys and challenges for our family. On New Year’s Day I was scrolling through the hundreds (OK, thousands!) of photos of Samuel on my phone and reflecting on all of the big moments life threw at us over the last year – Sam’s dedication and first birthday, his diagnosis and first trip to Baltimore, his first tooth and first word, just to name a few. But as much as I enjoy reminiscing about that sweet, round-faced baby who’s now a toddler, I’ve started to look ahead to what the next year will bring for Sam’s journey and for our family. If there’s one thing I’m sure of, it’s that we will continue to have the love and support of our family and friends, for which we are so grateful. Over this last year I have often felt distant from God, but He has used your prayers and words of encouragement as examples of His steadfastness, to uphold our family in difficult moments and remind us that we are not alone in this. My personal prayer for 2020 is that I can take each new challenge in stride (something I struggle with) and cast my anxiety on Him, and that I will recognize each blessing as it comes along and celebrate with Sam as he achieves new milestones.
We know that there have been a few months between blog posts, something we’d like to do a better job of this year. But we thought we’d start the year off with a lenghthy update/review on what’s been happing with Sam. You may remember that in September we went back to Johns Hopkins for Samuel’s second visit with his team of specialists. There were two main takeaways from that trip:
1. New back brace:
Sam’s orthopedic surgeon at JH prescribed a back brace to help correct some of his kyphosis. One of the main concerns with Metatropic Dysplasia is this spinal curvature (kyphosis) and the fact that it can cause the chest and lungs to compress, affecting a person’s breathing. Although it was an adjustment getting him to wear it, we do think the brace improves his posture significantly. He is still re-learning how to sit and balance himself and he frequently fusses when he gets overheated and sweaty, but overall it has been a positive experience. He is supposed to wear it 23 hours a day, but he has yet to sleep through the night wearing it. Below is a picture of Sam in his brace – he picked out the baseball-themed pattern!
2. ENT follow up:
The pulmonologist at JH recommended that we move forward with Sam’s adenoidectomy locally, as well as another sleep study several weeks following surgery. We chatted with his ENT specialist at Dayton Children’s in the fall, and his surgery is next week – January 8th. The surgery is minimally invasive and fairly minor, but he’ll need about 7-10 days to fully recover at home. We’re praying that everything goes smoothly and that the surgery will positively affect his sleep apnea. His next sleep study will be March 5th. Recently, he had a stuffy nose and had to sleep one night without his BIPAP on, and to our surprise his oxygen levels never dipped too low! We’re very hopeful that his breathing and apnea are improving with age and with the use of his brace.
Aside from the recommendations from the JH team, Sam has also had several well-check visits, vaccines, and follow ups with the NICU clinic (seems like the poor guy never get’s a break from being prodded!). One of his NICU follow ups was a third appointment with an audiologist. As with past visits, Sam’s tympanometry results were on the low side, meaning that the bones in his ear aren’t fully functioning. The audiologist suspected fluid behind his ears, but Sam has never had any trouble with ear infections. We’re still waiting to hear from his ENT specialist as to whether he’ll need tubes put in his ears. If that’s the case, it could help Sam’s speech development which is still progressing slowly. While his receptive language is off the charts (this kid doesn’t miss a beat!), his expressive language is still limited. In the coming weeks we’ll likely have him evaluated by a speech therapist, which might mean adding speech therapy to his regimen.
In terms of physical development, our Unstoppable Sam continues to press on.
I’ll pause here to say that one of the things I continually struggle with, as a parent of a child with special needs, is embracing the fact that Sam’s pace of development is his own. I have to consciously tell myself not to compare his milestones to the those of the typical kids in my life. Because when I do, I am left feeling isolated and guilty for not having shared in another parent’s joy and pride for their child. Jim and I have made an effort to celebrate each and every new skill that Samuel masters, and we realize that we may not be celebrating in the same way or at the same pace as other families, and that’s OK.
We think that Sammy likes to surprise us with new skills. Late last summer I left him on the floor with a book and came back a minute later to find that he had pulled himself up to stand at the couch! At that time, we told his therapists that our goal would be to have him take his first step by Christmas. They both agreed that it was an ambitious goal, but attainable. We’ve worked so hard with him these last few months with pre-walking movements (holding our hands, pushing his toy shopping cart, even standing for a few seconds without holding onto anything), but he never seemed ready to take that first step. But on Christmas night, after dinner at Jim’s parents’ house, he was standing against Jim’s legs and Jim backed up leaving him standing alone and wouldn’t you know… he did it, one step! Jim and I were elated at such an answer to prayer and all of Sam’s hard work. That same night he took a few more steps (mostly in the pursuit of Christmas cookies being handed out by his aunt), and I texted both his therapists to tell them the good news. It might have been down to the wire, but Sam met the goal just in the ‘St. Nick’ of time. It was the perfect Christmas gift! Since then he’s done a couple of steps every day, but he’s still building up the confidence to really go for it and take off.
It seems like we give so many medical updates, but we thought you all might want to know what else he’s been up to that doesn’t involve a doctor’s office. This fall Sam kept himself busy with quite the toddler to-do list: Visiting a pumpkin patch with friends and painting the pumpkin he chose, picking up the all the fall leaves he could find and crumpling them between his fingers, dressing up as an astronaut for halloween, and he even had an article written about him in the quarterly publication sent out by his therapy organization (click here to read it). Sam was also a big fan of the Christmas season (though not so much of the ‘big guy’ himself as you’ll see below). He loved looking at all the lights and Christmas trees, picked baby Jesus out of every manger scene he saw, and dressed up for Christmas pictures with his cousin. When it came time to open presents, Sam struck it rich in the Elmo department and also received a cool walking scooter called a Y-bike. Finally, Sam rounded out the year by ringing in 2020 with his friend Clara.
The new year will no doubt bring changes for our family, including possibly adapting our home to better suit Samuel and figuring out what a lighter photography workload might look like for me. In April we will not only travel back to Baltimore for his next visit, but while on the east coast we’ll also drive the couple hours north to Wilmington, Delaware to see another orthopedic surgeon for a second opinion. We’re looking forward to what 2020 will bring and are hopeful that Sam will continue to make big strides…quite literally! We are so very proud of him and blessed to be given another year to call him our own.