Happy quarantine, everyone! With coronavirus Stay-At-Home in force we thought it was a good time to update you on how Sam has been doing. The Stay-At-Home order in Ohio has me working from home instead of at the Speedway headquarters in Enon, bunkering in our home office and trying to fight both my own and Sam’s urges to play during the day. We are taking extra precautions given Sam’s high risk due to his respiratory conditions. As skeptical as anyone may be about it, in our house we have to take it very seriously for the consequences are too great to chance.
As a follow up after Sam’s adenoidectomy, he had a sleep study at Dayton Children’s on March 5th. Since Liz stayed the night for the first two sleep studies I took my turn and stayed this time around. They wanted to see if Sam’s sleep apnea had improved by removing the extra adenoid tissue, but because he had both obstructive and central apnea it was more to see how his overall apnea was progressing since his sleep study last May when he was put on BiPAP. After the sleep study, we had a “telemedicine” visit with the sleep doctor who said that his total apnea incidents per hour had dropped from 30 down to 3! The doctor was very encouraged by this and said that there is a chance he could eventually be moved off of BiPAP. However, with metatropic dysplasia there is chance his breathing could eventually get worse, so our plan for now is to continue with using it at night. Sam will no longer need oxygen during his naps, but since he’s very used to his BiPAP as a part of his bedtime routine (We’ve even refitted his old mask for “Peaches” the teddy bear to wear at night!), it’s not really much of a problem each night to have him wear it. We take this news as a blessing and hope for progress that Sam could eventually grow out of the need for breathing support.
We also recently had a follow up “telemedicine” appointment with his geneticist at Johns Hopkins in Baltimore. (Another casualty of coronavirus was the cancellation of our trip to Baltimore and Delaware at the end of April.) We did a video call where they could ask us questions on how Sam is doing, watch him play, and allow us to ask questions to help us in providing Sam what he needs in the future. The doctor was very happy with what Sam was able to do, how she saw him moving, and the progress he had made since our visit in September. Based on our conversation with genetics, the neurosurgeon updated us to say she didn’t have any reason to believe his stenosis (narrowing of the spinal cord, for Sam in his neck) is getting worse, which was also positive news. Since the orthopedic surgeon usually takes x-rays to view Sam’s spine and we are avoiding the hospital (coronavirus), we took several pictures and videos and sent them to the doctor for review of Sam’s spinal curvature and how he is moving and walking. Sam was very cooperative for the video and even hammed it up! Our appointments as video calls with the doctors in Delaware are still scheduled for the end of the month. We are using them as a 2nd set of eyes, ears and advice for how to care for Sam. In our minds, we cannot have enough experts helping us ensure the best care for Sam. We are blessed to have the opportunities and resources to give Sam the very best.
Sam continues to bring us many smiles: he has a penchant to entertain us by being goofy – wiggling his tongue, making funny sounds or copycatting the things we say and do; his walking is progressing, but slowly – he doesn’t hesitate to go 5 feet at a time but over longer distances prefers to find a wall to cruise along or grab your hand and pull you to help him; he knows the sound every letter makes, counts from 1 to 10, and sings many songs; his favorite things include Elmo, riding his scooter, and playing in the dirt. But recently airplanes have become his obsession, and we’ve worn YouTube out watching videos of the Blue Angels!
Our continued obstacles that we are working with Sam on include progressing his motor skills, which we are doing on our own as his in-home therapy has been paused (coronavirus). While he recognizes many words and says many too, most of the words he says are approximations. The progress he has made in both walking and speech is tremendous, but like physical therapy we are considering adding speech therapy after he turns two. While Sam may catch up on his own we want to help as much as possible without giving him too much.
We hope that through the Stay-At-Home and coronavirus you and your family stay safe and healthy, and we hope that in a couple of months things get right back to normal for all of us!