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.

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.

FAMILY

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.

THE AQUARIUM

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!

JOHNS HOPKINS

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.

When Oscar first was handed a pen at about 14 months, he held it with a perfect two-finger grip, instinctually. He started making circles and spirals by about 18 months. Oscar’s OT pointed out that this is somewhat unusual. Then, at two and a half, Oscar shocked us when he drew this self-portrait. Unprompted, entirely of his own volition. We immediately found a spare frame and hung it in the kitchen.

Several months later, still not yet three years old, completely out of the blue (literally and figuratively) one day, Oscar stunned us again with this drawing of “Cape Man,” a made-up superhero based on a small action figure-like toy he had seen at a friend’s house a few months prior. These two drawings were exceptions to the rule. He regularly drew pretty cool “designs” but not necessarily reacognizable, representative drawings.

Recently, however, this boy is surprising us on a weekly, if not daily basis, with his drawings. He’s working with an art therapist who says he draws at about the level of a seven year old. His service coordinator noted today that he has developed a real style to his work. I hadn’t thought of it that way, but when she said that it rang true. Often, when Oscar is drawing, if we try to ask him a question he says very pointedly, “I’m concentrating!” (subtext: Don’t talk to me and please leave me alone). Check out some of his newer work:

First Pirate Boat

Some "Characters"

And here’s the artist at work one sunny afternoon recently:

In this next drawing, the blue is a monster. The red is a scene from Finding Nemo, which he watched for the first time in the hospital in January. We recently borrowed it from his cousins and after watching the scene in the dentist office he decided he did not like the movie any more and we should give it right back. This is the dentist office scene that he did not like. For several days after he drew it, he refused to look at it or talk about it.

Some superheroes for cousin Emily’s birthday (he even wrote his name sideways in green-the “S” on top was the first S he made and he decided it didn’t really look like an S so he needed to rewrite it below the O):

Teeth Man

Oscar drew Teeth Man, another superhero, when he came to work with me for about an hour one day last week. A co-worker and I were talking and Oscar was sitting quietly and intently drawing. Suddenly in the middle of drawing he looked up and looked right at me and said, “I like being with you.” I nearly melted.

I love that when Oscar draws in pen, he draws minute details. Sometimes he spends a long time on the details and then he colors them in, coloring over them completely, so they are indiscernible. We have to be mindful of what we take away from him to save and what we allow him to keep working on as long as he wants to. His process is important to him, but sometimes to “save” the artwork, we decide when it’s finished. He’s filled a notebook and a half since the beginning of the year and that doesn’t include all the drawing he’s done on loose pages.

Pirates on a Pirate Ship

Oscar drew this yesterday, while I was at Wegmans. I don’t know what this kid is going to do next. But I do know we need some picture frames and some nails. We have plenty of wall space. We’ll just have to designate an Oscar gallery.

We are filled with gratitude and hope by the incredible outpouring of love and networking that has happened in the last week! This contest is for National Mobility Month and its primary purpose is to raise awareness about disability. Well, then, we have already been successful! And we can continue to grow that success!

8. Oscar’s current status and rank: At the moment of writing this post, Oscar had nearly 6,500 votes and ranked 12 out of over 750 entries! Pretty impressive!

We are humbled by the support and the coming together to raise awareness for SMA and people with disabilities. Van or no van, this contest is a winner!
Again, a million thanks from the Merulla-Bonn family.

Every day from now until May 13 go to http://www.nmeda.com/mobility-awareness-month/heroes/new-york/rochester/545/oscar-merulla-bonn and vote for Oscar. The first time you vote, use code 753 and make your vote count for 5!

This is such an incredible opportunity for our family. On the one hand, I know it’s naive to think we could win a national contest. On the other hand, someone has to win it (three vans will be given away, actually) and I am really hopeful. The timing of it couldn’t be any better as we found out about the contest just days before Oscar’s “go power chair” arrived.

And just for fun…

Oscar the fish doing his nebulizer with Dada the diver.

More soon!

Yesterday, when he saw me adding dirty dishes to the dishwasher, he asked to help. I was able to hand him spoons and forks that he could drop into the silverware receptacle in the dishwasher – and wow you should have seen that grin! He was so proud of himself!

Oscar is taking delight in the power of being able to move his own body through space in the way he wants to. He will often do a 180 or 360 just because it feels good, and because he can. He finally has some control over his own environment, and a new sense of belonging in space, I think. Last week he was able to play chase with the neighbor girls. He kept saying, “Do you want to zoom with me? Run, run!” He hasn’t been able to engage in real physical play up until now. This opens new doors, especially in his interactions with other kids. He’s also been asking to race us in the house, and he always seems to win!

See him in action…

Up the ramp:

http://youtu.be/x6yr7l00A_E

Silly in the Kitchen:

http://youtu.be/eN_LnXh4eOM

We couldn’t think of a better time to start this blog than just after Oscar got his “go power chair.” Last Thursday was one of the happiest days of our lives! Linda and John arrived from Fonte with the chair at about 9:30. With the incredible atypical March weather we’ve been having, we were able to stay outside all morning with the chair. There were a good two hours of adjustments to the positions of various parts of the chair: armrests, joystick, foot rest, head rest, lap and chest straps, and height and angle of back cushion. Oscar is so little that with the footrest at its highest position, his feet still don’t sit flat, so small blocks will be added to the foot rest for him. Ultimately this means he has a ton of room to grow with this chair, which is such good news. Time will tell, but it sounds like he should be able to get about three years of use out of this chair.

The adjustments continue

Throughout the adjustments, Oscar waited as patiently as a three-year old about to bite into his first real taste of freedom, independence, and speed could wait. At various times he was given the go-ahead to test drive his new wheels to see how the adjustments were working. At one point he took off into the neighbor’s yard to “hide,” at first, behind a tree trunk and then he disappeared in earnest behind their evergreen shrubbery completely out of view. As Linda called him to come back for more adjustments, he delightfully refused. We were all so thrilled. Oscar can begin testing the limits now in a way he has never been able to before.

Watch Oscar zooming away here:

http://youtu.be/w8n3tbp-E-E

Hello everyone!

It has been quite some time since we have sent an Oscar-Go update. Please know you have certainly been on our minds. We thought we could wait until all the painting projects were finished and we had art hanging on the walls to send an update that would include photos of the new house, but clearly that’s going to take more time than we expected! We don’t want to keep you in the dark any longer. So, finally we’ve posted a few photos of the house (and of Oscar!) on the gallery page. We are thankful every day for this house and everything you all did to help make our move possible.

Oscar continues to do well. He recently had his routine 6-month follow up with both the neurologist & pulmonologist: he is in good health. He continues to work hard in PT and OT. And he continues to be a stubborn two-year-old who often attempts to talk his way out of the activities he doesn’t want to do! He recently acquired his own mobile stander, which allows him to propel himself while in a standing position. Soon he’ll also have his own gait trainer, which will allow his body to go through the mechanics of walking while being fully supported. Two other new acquisitions for Oscar are a potty chair and “big boy” bed (a mattress on the floor, for now). He has made good use of both so far and we will continue working toward full-time use of each!

Transition is on the horizon! Oscar will be starting preschool in the fall, 5 mornings a week. We are not ready, though we suspect that he’ll do just fine. We’ll be leaving Early Intervention (the county-based organization that has been providing his services), and Daystar (daycare for medically fragile babies where Oscar has been attending two days a week) kicking and screaming. Oscar, and our whole family, has been taken such good care of. Oscar will be attending Rochester Childfirst Network for preschool and they, along with Brighton Central Schools (our home school district), and SKIP of NY (our service coordination agency) will manage all his services. Our interactions with RCN, so far, have been nothing short of wonderful, so we are feeling confident that Oscar will continue to be well-taken care of.

In May, we traveled to the Baltimore/DC area for a great week away visiting family and friends. While in DC, we attended the Fight SMA conference, a much smaller conference than the Families of SMA conference we attended in CA last year, but equally as valuable. Many of the same researchers were there and it was wonderful for Oscar to meet some other friends in “Go-gahs” (Oscar’s word for “wheelchair”). We reminisced about how fearfully we approached the foreign land of last year’s conference and marveled at how much more at home we feel within the SMA community now (indeed, it is a community). Nonetheless, we are still adjusting to this new normal we are living. It can be pretty exhausting keeping up with Oscar’s appointments and therapy schedule. We often feel like we’re behind the eight-ball, trying to incorporate all we learn from PT & OT into Oscar’s daily schedule. There never seems to be enough time for everything. Yet, Oscar is thriving.

We are excited to say that we’ll be participating in the 8th Annual SMArt Walk for a Cure, a benefit for the western New York chapter of FSMA on August 6 at Beaver Island State Park, just outside of Buffalo, NY. We’d like to invite you to be part of Team Oscar-Go and walk with us. To register, visit our walk-n-roll home page http://www.fsma.org/LWC/teamoscargo and click on the “Join My Team” link at the bottom of the page. If you’re not able to join us on August 6, and you’d like to make a donation, you can do so through the above-mentioned link or by contacting us directly, as well.

Please don’t hesitate to contact us regarding the walk-n-roll, or anything else, at info@oscar-go.org. We hope this finds you all well and we thank you again for being part of our amazing community.

All best,
David, Sally, & Oscar

We feel so blessed by the incredible community we have here in Rochester, and our extended community that reaches out beyond city, state, and even national borders. Although we are both writers, it is incredibly difficult to find the words to match our gratitude. We feel buoyed by the love and support of all of you.

The goal of the fundraising part of this event was to gather funds toward a down payment on an accessible home for Oscar. That goal has certainly been met! And, as the universe would have it, we think we have found that home. We had been anticipating a move next spring, but just 5 days after the Oscar-Go benefit, we looked at a house in Brighton that is fully accessible, already. We will keep you updated!

We would like to be able to thank each one of you individually, and we hope, that over time we will be able to do so. The sheer number of thank yous, paired with the recent developments on the house front, may delay our ability to get to everyone. There are over 170 identified individual donors (not to mention countless anonymous donors). In addition there were over 50 businesses and individuals who donated items for the silent auction and raffle, over 20 volunteers helping with the event and there were over a dozen people/establishments who donated food and beverage for the night of the event.

We would like to extend a special thank you to the six individuals who became known as the Oscar Ensemble. They donated countless hours and valuable skills toward the planning, promotion, and execution of this event. They are: Donna Kowal, Tom Kowal, Joe Tunis, Alexa Scott-Flaherty, Jon Itkin, and Garrett Rubin.

Oscar really enjoyed his party! Although the crowd was overwhelming for him at times, he marveled at the “O” t-shirts that all the volunteers were wearing and he was thrilled to see so many of his favorite people all in one room. We have a very happy little boy and we thank all of you for being a part of his life, a part of our community and of our support network. Our gratitude is immense.

With big hearts,
David & Sally

To view more photos from the event, please see the Gallery page!