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Days Just Go On

Friday, June 8th, 2012

by Sally and David

Today was a long day. It’s actually been a long week, truth be told. David is dealing with a new electronic medical record at work, which is proving to be quite challenging for everyone involved. David has the pleasure of being a “superuser” which means everyone can go to him with questions and problems about the new system. And let’s just say there are a lot of questions and problems. For Sally summer season has hit again. She oversees over 70 literary youth camps and she is now in final the weeks before the launch of the camps. Thursday is her usual day off. However, today she went in just to clean off her desk that looks like a tidal wave hit it. But there were too many camp details to deal with. The desk is still a hazard zone.

In a couple weeks we head to Minneapolis for the FSMA Conference where we’ll be presenting “Tapping into Creativity: Tools for Personal Healing,” a workshop on using creativity to cope with the challenging emotions of being a parent of a child with SMA. So we are trying to pull together all the details that go along with air travel and a power chair, chair battery charger, cough assist, nebulizer, and figuring out if we need to bring the booster seat, the stroller, the car seat, not to mention all the other items that go along with traveling with a kid. We’re also in the throes of pulling together the last details of our presentation and resource packet for the conference.

Then there are the complications of scheduling band practice among three incredibly busy fathers for two shows in July that will be here before we know it. The complications of scheduling writing time when Sally has to work during her usual writing time most of this month. (Don’t deprive creatives of their creative time: the results are ugly). Then there’s the half acre of lawn and landscaping that’s slowly turning into a wilderness area, Oscar’s daily regimen of PT activities and respiratory therapies—not to mention his appointments with various therapists and providers. Nevermind putting three meals a day on the table, laundry, keeping the house from turning into a war zone.

Needless to say, we were both a little frazzled as we sat down to dinner tonight. Oscar is pretty intuitive and asked, “Dada, are you okay?”

“I’m just a little frustrated because it’s been a couple of chaotic and busy days.”

Oscar answers with, “It’s okay, Dada. Days just go on.”

And then he proudly put his rigatoni on his fingers and waved it about. Just the tonic we both needed. Days just go on.


Sunday, June 3rd, 2012

Minnie handing Oscar a flower the day he got his "go power chair"

Thursday was our last session with Minnie, Oscar’s physical therapist. She is retiring and moving to California to be with family. Minnie has been working with Oscar twice a week for the last two and a half years. She started just weeks after he was diagnosed with SMA.

Minnie holding Oscar at the Oscar-Go benefit, July, 2010

Minnie is one of the most remarkable people I’ve ever met. Her dedication to her work is unparalleled to anything I’ve seen before. Minnie stops at nothing to provide for her families and her kids. She has infinite ideas and knowledge about positioning, stretching, strengthening, mobility, independence, and equipment, all of which one would hope for from any great PT. Minnie also has (or had-she’s slowly doling it out to agencies, schools, and families before her move) an incredible equipment and toy collection. She owned so many pieces of adaptive equipment that Early Intervention (Monroe County’s birth-to-three program) providers would go to her home to borrow things that agencies didn’t own. Strollers, wheelchairs, gait trainers, standers, high chairs, bikes, bath seats, adaptive chairs, wedges, riding toys. And yes, plural for all of these items. And if a child would benefit from something that Minnie did not by chance own, she knew who to call to borrow it or where to go to buy it.

Minnie lets Oscar do apps on her iPhone in order to distract him from realizing he is working hard physically (i.e. kneeling in this photo from February, 2011).

When I was pregnant David and I had definite ideas about toys: they should be wooden or cloth, they should never involve movie characters, they shouldn’t make any noise unless they were musical instruments. Once we had Oscar we quickly realized that we might have to allow some plastic into our house but would still attempt to ban battery-operated noisy toys and movie characters. On Minnie’s first day she brought a large plastic farm model with a rotating base that, when spun, would sing a song, “The spotted cow says moo, the horse is brown and neighs, the yellow duck says quack, quack, quack, and won’t you be amazed!” It was loud and big and plastic and Oscar loved it. Minnie had him sit on my knee and use his toe to make the disk with the animals on it spin. He was fifteen months old and could barely get it going with his foot. He didn’t have the strength to kick but he was determined to try. And boy was making that toy sing good incentive!

Oscar and Minnie having way too much fun blowing bubbles and increasing lung capacity. December, 2011

At the end of that first session Minnie offered, no insisted, that we borrow the farm toy. Not knowing about her extensive collection, I was surprised and confused that she would leave a toy she might need for another kid with a family she had just met and really didn’t know, but she was convincing so we agreed. We would come to learn that Minnie had a basement full of toys (and I mean an entire room with floor-to-ceiling shelves packed to the gills) and this did not even include all the toys she had on loan all over Monroe County (which was surely at least double the toys she had stored in her home). You see, every where that Minnie went, she was thinking about her kids and what toys or equipment they would like, or would help them. She likes to think of herself as having a huge brood of grandchildren to care for and spoil. Two and a half years after that first PT session we can still sing, with great fondness and appreciation, “The spotted cow says moo…” in our sleep and we know that this practice of loaning toys is a small example illustrating Minnie’s enormously generous spirit.

Months after beginning work with Minnie, David and I were at Wegmans with Oscar in the shopping cart. We had stopped in the produce section in front of the lettuce when David and I each caught a motion out of the corner of our eyes. We looked down to see Oscar’s leg swinging. Surely the sudden stop of the cart had sent Oscar’s leg into motion. But the movement continued. And then the other leg started moving, too. Oscar was kicking his legs! He had never done this before. We were wide-eyed and giddy. Upon his diagnosis we had been told he would lose strength steadily over time. But here he was gaining strength! Two years later, he can still get his legs going in a pretty decent swing. This is only one of the many, many ways in which Minnie has helped Oscar gain strength and mobility in the last two and a half years.

Minnie supporting Oscar while he stands at the fridge, July, 2010.

After Minnie told us she was retiring I sent her an email asking her if the new PT would be able to look knowingly into my eyes and right down into my soul and with her look alone let me know she understands me completely and reassure me that indeed I am doing right by my kid even though I’m not a superhero. This is what Minnie does, at the moments I need it most. Minnie comes to each session ready to meet Oscar where he is on that day, understanding that a small child’s mood and energy can greatly affect his physical capabilities. But Minnie also comes ready to meet me where I am on that particular day. She understands the challenges and triumphs of being the mother of a child with significant needs. I have always referred to her as “our PT,” rather than “Oscar’s PT.”

Minnie consistently goes above and beyond. She has attended doctor’s appointments with us; come to our house on Saturdays to drop off equipment or examine a demo model on loan from elsewhere; sent and received text messages at all hours of day or night about adjusting equipment, Oscar’s successes, our concerns, scheduling; she even visited Oscar in the hospital on New Year’s Day. Minnie has told us about countless resources we would not have known about otherwise: Daystar (the special needs day care Oscar attended for a year), an affordable motorized bed so Oscar can sit himself up in bed, the warmest community pools in the area, which websites have the best prices for adapted toys or equipment. She has also given us countless ideas about how to adapt our home environment to best suit Oscar’s needs.

Minnie encouraging Oscar to walk in his gait trainer, July, 2011.

Minnie is incredibly pro-active. She is always thinking ahead to what Oscar will need next and how to stay ahead of SMA.  When we go to SMA conferences or read up on care of the SMA child, it is always recommended that the family has a strong team: a pediatrician, a neurologist, a pulmonologist, an orthopaedic doctor, possibly a gastroenterologist or dietician. Somewhere along the way a PT is usually mentioned, but rarely as a necessary component of “the team.” Minnie has been at the forefront of Oscar’s care for the last two and a half years. We are lucky that we have full confidence in Oscar’s medical team (and we really like them all, too)! But it is Minnie who sees Oscar every week. It is Minnie who notices the subtle changes. It is Minnie who is thinking of Oscar every single week, devising ways to increase his mobility and strength, to boost his sense of independence and confidence, to preserve and enhance his muscle and lung function through PT activities.

I could go on and on. It’s hard to know where to stop and which stories about Minnie to save for another day.  We are so thankful that she has set the bar so high, so that we can know how high to set our expectations for future therapists and also to have high expectations of what Oscar is capable of. We will miss Minnie tremendously, both as Oscar’s PT, and as the dear friend she has become.

During the last PT session Minnie reads the card Oscar made for her, which includes a message entirely dictated by Oscar with lines such as, "You're supposed to miss me."

Raising Awareness

Wednesday, May 16th, 2012

The first phase of the National Mobility Equipment Dealers Association (NMEDA) Mobility Awareness Month van contest came to a close Sunday. We received official word today that indeed Oscar is in the top 10%, which is where he needs to be to enter the next and final phase of the contest. Everyone who is in the top 10% (approximately 170 people) will now be considered to win one of three vans. A panel will review the profiles of each entrant and choose the three they feel have the highest need and the most compelling story. I don’t envy the people on this panel. If you haven’t taken the time to read or watch the profiles of some of the other entrants, we encourage you to do so here. The winners will be notified in the coming weeks, with a public announcement coming in early June.

We are humbled by the outpouring of support Oscar has received throughout this contest, from near and far. Last week NMEDA sent out a message saying that in order to be in the top 10% an entrant would need to have over 5,000 votes. At the close of the voting Oscar had 20,870 votes! You are all amazing. We cannot thank you enough. The experience of this contest has far exceeded what we could have imagined. Oscar has enjoyed “checking the votes” with us as we read off the incomprehensibly large numbers to him. At the start of the contest, as I was glued to the computer screen, trying to get the word out, Oscar would ask, “What’s mama doing in the office? Trying to get my van?” We have tried to emphasize to him that there are many, many people who need a van just as much as he does.

Gathering votes has been only a part of this contest. May is National Mobility Awareness Month and our top goal in this process has become raising awareness for mobility issues and for SMA. We are stunned by the media coverage our family has received. In the last ten days Oscar has appeared in the Brighton-Pittsford Post (click here to view the story and a video), on WHEC channel 10 news (view here), in a blog for the Democrat & Chronicle (read here), and on channel 13 WHAM news (watch here). These stories have highlighted our family’s participation in the NMEDA van contest. In all of our interactions with the media we have tried to emphasize the importance of raising awareness for disability issues and for SMA. In addition, there are over a dozen other entrants in the Rochester area who we feel deserve media coverage as well.

Indeed we entered this contest to try to win a wheelchair accessible van. The need is significant. The more time that passes with Oscar using his power chair at home, and the more often we take Oscar out into the community in his manual chair or in his stroller, the more we wish we had a van that would enable Oscar to interact independently with his environment.  But thousands of other people also need wheelchair accessible vans. As the contest has gone on, and the media coverage has built up, that goal of raising awareness has become far more important to us than the goal of winning a van. Who are we to say that our family deserves a van more than any other? The need is vast.

Thank you for helping us spread the word. Keep it up. Encourage your family and friends to view the profiles of the entrants in the van contest. Check back here now and again to see what Oscar is up to. We feel so lucky to be surrounded by a community that is willing to come together for a good cause. A community that exists here within Rochester, but also a community that knows no geographic boundaries. We have found unexpected overlaps of people who know each other within our community. And our community has grown in recent weeks to include people we’ve never met. Our gratitude runs deep. We feel blessed by your presence in Oscar’s life.

Baltimore: Family, Aquarium, Johns Hopkins

Tuesday, May 1st, 2012

Vote daily for Oscar HERE!

Two weekends ago we traveled to Baltimore where we visited family, went to the National Aquarium, and took Oscar to see an SMA specialist at Johns Hopkins.

Oscar’s “thing” right now is underwater: creatures and divers. When we realized Oscar would have had his power chair for about a month by the time we took our trip to Baltimore, we couldn’t imagine pushing him around the aquarium in his stroller or manual wheelchair. It didn’t seem fair for Oscar to have this amazing independence at home and then go to this magical place and have to be a passive participant. We looked into renting an accessible van, but it would have cost close to $800 for a 4 ½ day trip. Our dear friends Donna and Tom offered to loan us their van and we were able to borrow a portable ramp from our equipment dealer, Fonte.

We left Thursday night after dinner and arrived at a motel in the middle of Pennsylvania at 11:15 p.m. Oscar had slept soundly in the car for about two hours, but when we arrived at the motel, he woke right up, full of energy, delighted to be on a trip and at the motel. He sat in bed, bouncing and grinning, repeating, “I like this trip! I like being at the motel!” All three of us did finally go to sleep around midnight. We drove the rest of the way to Baltimore on Friday, landing at aunt Linda’s for the weekend.


Oscar and "Paul Paul"My sweet cousin Paul, aunt Linda’s son, who is like a wise little brother to me, an uncle to Oscar, and  a twin in an alternate universe to David, made the trip from Philly to Baltimore to spend the weekend with us, as well. Oscar and Paul, who only see each other once or twice a year, typically, have always had an affinity for one another. This time, they found an added bond. Paul, who has hemophilia, had recently injured his toe and needed to give himself shots of clotting factor throughout the weekend. Oscar was quite intrigued with the idea that Paul had to give himself shots (though recent memories of shots, blood draws, and IV lines from his own hospital stays kept Oscar from wanting to watch the shots). Oscar had lots of questions about why Paul needed the shots, and I think he found a real sense of camaraderie in learning that Paul’s blood doesn’t work the same way other people’s blood works, and he needs to do special things to help his blood work better. Oscar understands, in the way a bright three-year-old can, that his own muscles don’t work the way other people’s do, and he needs to do special things because of that.

Our stay at Linda’s was as wonderful as it always is. She takes such good care of us, providing the most relaxed and easy-going environment. Not to mention delicious home-cooked meals, ice cream, and Baltimore-famous Berger cookies! It was also great to spend time with Uncle Don & Aunt Jody, cousins Amy & John, and their sons Sam & Jakob, and have a surprise visit from dear friends Monica & David. Aunt Linda’s newly-enclosed sunroom, where we spent much of the weekend, has created the pipe dream of someday turning our enclosed porch into a three-season sunroom.


Saturday morning we got up early and headed to the aquarium. It was just as magical as we expected it to be, and then some. Oscar was free to decide which fish and which tanks he wanted to get close to, and then go check them out. Several docents (if that’s what you call them in an aquarium) took a liking to Oscar (which seems to happen nearly anywhere we go) and stuck with us for long stretches to give us added information (did you know that an octopus has NINE brains?! One primary one, plus one for each tentacle). Aunt Linda had also done a little research ahead of time to find out when the divers would be in the water that day. Oscar had several diver sightings, including a conversation through the glass of the tank in which one diver named Dennis took a liking to Oscar and they each showed their mutual interest in each other by sticking their tongues out at each other! Oscar was quite enamored that this diver took his mouthpiece out in order to return Oscar’s tongue gesture! Dennis then motioned that Oscar head up the ramp to the top of the tank. Dennis and another diver, Zach, met us there where Oscar had his picture taken with them. This was the highlight of the visit for Oscar. He especially likes this photo where all three of them are making the special diver “OK” hand signal. Later, in the dolphin viewing area, a woman, probably in her eighties, was being pushed in a wheelchair. As Oscar zoomed out of the area, he stopped right next to her and looked her in the eye and said, “I use a go chair too.” It was so endearing. We’ve pointed out other wheelchair users to him before, but this was his first opportunity to physically stop and choose to interact. So sweet. A miraculous day!


Our last stop in Baltimore was at Johns Hopkins on Monday morning. Oscar had an appointment with Dr. Tom Crawford, a neurologist specializing in SMA. We had seen him speak at both the FSMA conference in 2010 and the Fight SMA conference in 2011. We decided to make an appointment with him to get a second opinion in order to see if he had anything different to offer than what we had heard so far. He came right out to the waiting room to meet us. It appears that this is the norm at Johns Hopkins, at least in the department of neurology, as we watched several other doctors do the same with their patients. Dr. Crawford reviewed Oscar’s medical history with us, tested the limits of Oscar’s strength and balance by giving him a toy car to reach for and a rubber ball to catch and throw, checked for muscle tightness by taking him through several range-of-motion exercises (Oscar did not like this at all 1. because he wasn’t expecting it and 2. he is indeed tight in places so the stretches hurt). All in all Dr. Crawford spent about an hour and forty minutes with us. Pretty impressive.

After examining Oscar and talking with us, Dr. Crawford had some pro-active suggestions. First, he believes Oscar is ready for a sleep study. It is common for kids with SMA to hypoventilate in their sleep. The weak chest wall doesn’t allow strong enough exhales to release as much carbon dioxide from the lungs as a typical person can. While awake, many kids with SMA can just work a little harder to exhale. In sleep, the complete relaxation can cause hypoventilation. Oscar does wake frequently in the night, to ask for help in rolling over. There is a chance that this is caused by hypoventilation. A properly conducted sleep study will show whether or not that is the case. If Oscar is hypoventilating, then he will need to start using a BiPAP at night. This is a device that allows better flow of breath into and out of the lungs while sleeping, by wearing a mask that helps push air into his airway and allow for a full exhalation. Even if he is not hypoventilating, Dr. Crawford wants to consider the use of a BiPAP as a preventative measure, as it can help increase lung capacity and hold off some of the inevitable respiratory weakness caused by SMA.

In addition to the sleep study and possible BiPAP, Dr. Crawford wants to see Oscar back in six months to assess the progression of weakness in his spine and to consider the use of a TLSO (Thoracic Lumbo-Sacral Orthosis), also known as a body jacket, posture-corrector or back brace. Oscar suffers from kyphosis (curving forward of his spine), which in turn compromises his lung capacity and overall respiratory function. Oscar saw an orthopaedic doctor here in Rochester earlier this year who thought he did not yet need a TLSO. However, Dr. Crawford wants to keep a careful eye on Oscar’s spine and possibly prescribe a TLSO proactively. He said with SMA, he opts for these earlier than other doctors do, because changes in the spine can happen quickly and the TLSO can help preserve and even enhance what lung function and capability a young person with SMA has. So, in the coming months/year there may be some more big changes in store for us and for Oscar.

In many ways we were hoping Dr. Crawford would say we’re doing everything that can be done and there’s no need to change a thing. We were aware of sleep studies, the BiPAP machine, and the body jacket but we thought of all three of them as things that were in the distant future, nothing we needed to think about or really know about now. It was hard to hear that these interventions may be introduced soon. It brought right back up in our faces the reality of what SMA is: a progressive disease that requires a lot of medical attention to prevent rapid decline. It’s really hard to face that in relation to our little boy. Yet, if these interventions are going to prove helpful in the long run, we are grateful to be able to work with a doctor who is willing and able to take such a proactive approach. Dr. Crawford has worked with over 200 type 2 SMA patients in the last 25 years and has seen only three deaths. He was adamant that Oscar have a college fund, that Oscar will be going to college, that Oscar will need support in place one day to live without his parents taking care of his every need.

Despite the fact that the visit left us feeling, for several days, heavy, unsettled, and sad about looking SMA in its ugly face again, we are indeed thankful for the opportunity to have Oscar seen by one of the top SMA specialists in the country. We will continue to go back to Dr. Crawford, once or twice a year, as needed.

So, we soldier on, recalibrating our new normal once again. With each challenging opportunity to adapt to something new, we get better and better at navigating this life path.