Update on Matthew

June 25, 2011

A whole week has slipped by since Matthew had surgery on is arm.  I’m not sure where the time goes sometimes.  Many of my friends and coworkers have asked how Matthew’s been doing.  I’ve been answering people whenever they ask, with vague promises that I’ll update something on this blog.  Like I said…. time flies!

I’m happy to report Matthew is doing quite well now, but it was NOT smooth sailing to get here.  When they checked us out of the hospital on Friday (the 17th), it was a matter of trying to keep Matthew’s pain under control.  By Sunday of that weekend, it seemed as though things were under control.  Things were looking good from a recovery standpoint.  But on Sunday night and into Monday morning, he screamed… a lot.  It seemed to Mary and I that he was in excruciating pain.  We were pretty clueless as to what was wrong – we had been giving him his pain meds still through that point.  It was so bad that we thought either the wire they put in his arm was out of place or that he might actually have a new break.  We actually took him back to the hospital in Richmond to get checked out.  The doctors could not find anything new or out of place.  But I do have this x-ray to show the class what his arm looks like:

Amazingly, Matthew was calm when he got this x-ray.  That’s new for him.  He knows what x-ray machines are, and he knows he doesn’t like them.  Somehow, though, I think that he knew we wanted him to be well.  But as I said, the doctor could not see anything amiss.

It was very frustrating for most of the week, as he kept screaming out, mostly during the night.  We assumed that he was having some side effects from his pain meds – nightmares.  I assume that the nightmares were waking him up, and he was jerking his broken arm in pain in his sleep.  Now that he’s no longer taking those heavy narcotics, the dreams seem to have stopped, and he’s finally getting some good sleep.  I have to say, what I’ve just described is mostly a guess on my part.  It’s not as though he can tell me!

Like I said at the beginning of this post, he seems to be much better now.  He’s is much more himself.  He plays, laughs, sits up independently, and of course watches train movies.  He sleeps much better than even a few days ago.  He’s even figured out how to get around a little bit by rolling around.  We’ll have another assessment by his orthopedist later this week, and at that point, we will hopefully have an estimate of when this soft splint comes off.


Season 2

June 18, 2011

I felt it was time to bring back the ole’ blog in light of the fact that we once again have a Ragnar relay team running to support the OIF again this fall. Believe it or not, I don’t like writing too much into the blogosphere, but I found that it was a pretty good forum to talk about A) Matthew, B) OIF in general, and C) Running. Plus, I had someone recently ask me what happened to that blog I used to write. So here it goes…

I have to start with Matthew. First, he’s the most important. Second, recent events are prompting me to write this blog. Back in February, Matthew had a second set of rods put into his right leg. If you’ve read my posts from last year, you may recall that Matthew broke his left leg in the fall and had a telescoping (Fassier-Duval, or “F-D” rod) put into his femur, and a rush rod put into his tibia. Well, in February of 2011, the same thing happened with his right leg, and the same surgeon in Richmond put an F-D rod in his right femur and a rush rod in his right tibia. Now, in June 2011, Matthew had finally been gaining some significant mobility, walking quite well on his own. Unfortunately, accidents do happen, and he took a fall this Thursday. He broke his right humerus in the process. It was a pretty clear cut fracture, and broken completely in two. It was clearly excruciating for him; he was probably having some muscle spasms around the area of the fracture. Pain management was quite an issue for the nursing staff. The same surgeon who’s performed surgery on both his legs saw Matthew again first thing on Friday morning. A quick, “easy” surgery later, and Matthew’s humerus was realigned with a long metallic wire from elbow to shoulder. He’s in a soft splint now instead of a full cast, and we are hopeful that recovery time will be short. His doctor was able to insert the wire without making an incision! Mary and I will be on pain-management duty for the next few days, giving Matthew medicines around the clock to keep him comfortable. This particular fracture was kind of bad timing; Matthew had only gotten his semi-annual dosage of pamidronate a week earlier (a drug to suppress natural bone metabolism). Generally, you want to space out the drug treatment from a fracture – it could slow the healing process.

It occurs to me that I have not spent a lot of time in the past talking about the OIF in general. So I’d like to change my own “advertising” a little bit and talk about what the OIF does. A quick introduction to Osteogenesis Imperfecta (OI) is probably in order. It is a very rare condition, affecting ~40,000 Americans. It’s most obvious symptom is brittle bones; hence, it is often called “brittle bone disease.” Those with the condition, such as my son Matthew, are subject to many, many bone breaks throughout their lives. It usually stunts growth, and can be very painful. At it’s core, OI is a genetic disorder in which the body doesn’t make enough of the correct types of connective tissues, particularly collagen. Here goes the engineer in me… think of the collagen as the lattice to which the calcium adheres to form the structure of the bone. With weak or non-existent collagen leaves the calcium with nothing to build on… it’s like concrete with no re-bar, strong but can crack very easily. If you’ve ever seen the movie “Unbreakable” by M. Night Shamalan, Samuel L. Jackson’s character “Mr. Glass” has OI. That’s probably the best known instance of it in pop culture. The actor – Atticus Shaffer – who plays “Brick” on “The Middle” has the condition in real life.

The Foundation serves as a focal point for families faced with this condition, who frequently haven’t even HEARD of the condition until their child is diagnosed at birth (or as in Matthew’s case, sometimes even before birth). Often, people don’t know what to expect. In my own personal experience, the OIF was very good about providing us with some educational resources right up front, and helping to get us in touch with other families battling OI. We still carry around the “OI for Nurses and Caretakers” manual in Matthew’s travel bag and first-aid kit. The foundation also sponsors a number of scientific studies surrounding the treatment of OI. Given its rarity, OI does not frequently garner grants and other funds to conduct research; the OIF seeks to supplement that research. The OIF also holds a bi-annual conference, that sort of performs those two major functions at once. Mary and I managed to attend the summer 2008 conference in Washington, DC… literally 3 weeks after a sonogram diagnosed the condition (Matthew wasn’t born until October of that year). The conference offers many different useful workshops… adaptive equipment, research progress, play groups for children, ad hoc medical consultation, and I even attended a session on how to upgrade the house for accessibility! (I haven’t DONE anything…)

So lastly, I am actively training once again for the Washington, DC Ragnar relay race in September. Last year, I ran with 11 other folks in support of the OIF and we called ourselves a Bunch O’ Nuts Exercising… B.O.N.E. I’m happy to report that all 12 of us are doing it again in support of the OIF! The Ragnar Relay series is hosted in several different places around the country throughout the year. It is a 200 mile relay race; each of the 12 runners is responsible for 3 separate legs of the race. And, let’s be honest, not all legs are created equal. Last year, yours truly ran a total of 16.5 miles; my toughest leg was probably my first, in which I ran up a rocky dirt road, up a mountain, and back down again for about 3.5 miles. I’d be lying if I said I ran it all. But I sincerely WANT to do better this year. My late night run was kind of fun actually, running at about 11pm for 6 miles. Then my last leg – another 6.6 miles – coincidentally took me near OIF headquarters in Gaithersburg, MD. My legs were fairly average compared to those of my 11 team mates. Some of them definitely faced tougher challenges than me. In all, we ran the ~200 miles in 31 hours and 23 minutes last year, well enough to place in the top one-third of the finishing teams. And no, there is no sleep 🙂 So, please consider taking a read of our team’s charity page at: http://www.oif.org/site/Calendar/1848303058?view=Detail&id=9502. As the summer progresses, and I continue to train with these folks, I’ll try and post interesting stories about our shenanigans to get ready for the race!


PS – take a look at my wife Mary’s page: http://www.beadsforbones.blogspot.com/  She also writes about Matthew!


September 26, 2010

Well, first off: I apologize for not putting together any last minute blogs about the training and count down to the race itself. I could make all kinds of excuses… some legitimate, some maybe not-so-much… but the point is, I didn’t write any updates. The short story is that I ran a lot in the final weeks of training: I ran the Hartwood 10 miler with several of the Ragnar team mates, I ran some hills to try and prep myself for the relay race, and we raised a lot of money for the OIF.

Race “day” was Friday and Saturday the 24th and 25th. So today’s update is all about the race itself and the success story of what we’ve managed to raise for the OIF. A word about that first: I am extremely grateful to ALL my race team mates who put in all this hard effort of training and then running the event itself. We took on a cause for charity this year that is obviously very personal to myself and I feel that my team mates have done me a huge favor by supporting the cause. Jen, Todd, Brian, Jen, Dave, Andy, Sandy, Karena, Chris, Al, and Jeff: Thank you!

We managed to raise $6134 for the foundation, which for an organization as small as the OIF is rather significant! We named our team to coincide with the cause: we named ourselves B.O.N.E. (Bunch O’ Nuts Exercising). Thanks to everyone who ran, everyone who volunteered (the Grossweilers), those who lent us vans, and those who donated to the cause.

If, for those who don’t know the details of the Ragnar Relay, there are 12 runners who split up 201 miles of running. We split into two vans of six runners each. The race is divided into 36 legs, and each van will tackle 6 legs at a time. To be clear, the legs are not balanced, either in terms of length or difficulty. The race started in Cumberland, MD and ended at the National Harbor outside of Washington, DC. The race is non-stop, so one member of the team is always running at any given hour.

Our trek began on Thursday afternoon from our rallying point at Chris Reinhardt’s house in Fredericksburg. Chris has been diligent about finding people willing to lend us two 15-passenger vans. While I don’t know these people, I am very grateful to them as well, and to Chris for taking the effort to find them. 11 of us (everyone but Brian) met up there, loaded the vans with our stuff, and left northbound. We stopped in Marshall, VA where Brian Verhoeven met up with us at a pizza joint for dinner. This was one of the few points where all 12 of us would manage to be together. From there we drove north to Cumberland, MD and stayed in a hotel near-ish to the start line.

On Friday morning, we checked out of the hotel and headed off to the start line at Rocky Gap State Park in western Maryland. Those of us in van #1 arrived an hour ahead of the start time for a safety briefing and general check in procedures. Van #2 arrived shortly thereafter to see Jen DeLecce off as runner #1. The starting whistle was at 8:30 am. Not all 240-some teams started at the same time, but there were probably about 20 or so teams that were in the same start time as us. Jen ran 4.8 miles in a large loop before passing the baton (a snap bracelet) to Todd. So on the plus side, the two vans could stay put in the park and wait for the first exchange. After Todd took the baton, we had to drive to exchange #2, and really wouldn’t see van #2 people again until the first major exchange (#6). So while it’s a team event, there are really two sub-teams. More on that later.

Todd took his first run of 5.1 miles through some tough terrain with a large mountain at the front end, but managed a pretty good pace. His “hill” was a little over 2 miles long and up about 600 feet – that’s about a 5% slope for a really long time. The slope was probably greater than that at some points, because he even had a short down-hill run in that two mile stretch. We pulled the van over along his route up the hill to cheer him on. We were in some country areas where there really wasn’t much room to pull over, but I think the simple cheering (and a little bit of water!) was helpful. We still had paved roads at this point too. Then poor Todd had to run down the hill. Don’t let anyone ever tell you that that’s easy! That will tire out your legs just as much, but completely different muscles.

At exchange #2, Todd passed the baton to Brian. Brian had two pretty bad hills; the first one arguably being easier. His run was 6.9 miles. We met up with Brian at the top of his second hill. That hill was 5.5% slope for 2.75 miles… and the roads were no longer paved. Pretty brutal. When Brian saw us at the top of the hill, I could tell he was relieved, and he was looking to pass of the baton. What was really unfortunate, was this was “only” about 5 miles into his leg… he still had 2 miles to go! I actually felt a little guilty stopping to cheer, because it lulled him into a false sense of relief. Kudos to Brian to keep on trucking!

At exchange #3, we met Brian where he passed the baton to Jen Siess. Jen took off on her 4.6 mile run the last mile and half with a pretty steep run. Probably in the neighborhood of 4.5% at some points. But again, the roads were not paved. At this point, the gnats and other bugs were also pretty brutal out in the wilderness-y area of Green Ridge State Park. We met Jen with some water as she got to the steepest parts of her run with about a mile to go.

At exchange #4 it was my turn. My leg was short, only 3.9 miles, but very steep (7-7.5% slope at the end). I ran on gravel the whole way, got passed twice, but passed two other people. What frustrated me was that I got passed on the flat 3/4 mile at the first part of my run. At 1.5 miles into it, I had to take on my hill for a mile and a half. There was a water station managed by volunteers of the race near-ish the bottom of the hill. At that point they told me it was only a mile to the top. It was encouraging to hear, but they were liars!! The van waited for me at the top to give me some water, which was good. The downhill part for the last mile or so was very hard: it was steep down, lots of switchbacks, and lots of gravel. There were one or two points were I was sure I’d lose control and seriously hurt myself. At least at this point I was able to gain some speed and make up for some lost time.

At exchange #5 I passed the baton to Dave who ran his 6.2 mile leg over some very uneven terrain. As I stated earlier, don’t let anyone telly you that downhill runs are easy. His leg was generally sloping downhill, but making any estimates of slope don’t make a lot of sense because the terrain was so uneven. Dave made some good time and we met up with him at the Little Orleans camp ground.

At exchange #6, we met up with van #2 where Andy would be the first runner from that van (#7, overall). We didn’t really have much time to mingle with van #2, because they had to move on to the next exchange to get the baton from Andy. So, for us in van 1, the first set of legs took about 4.5 hours, and we passed off the baton at about 1pm (I think). Obviously, cell phones and a sense of how long your run would take was critical to coordinating with the other van. Since we were at the camp ground, and the race organizers were pretty well organized this year, we were able to use the camp ground’s showers and bathrooms. Not luxurious by any stretch, but at least we were able to shower!

We had some off-time to eat, drink, and relax a bit before we had to meet up with van #2 at dusk-time. I would guess it was about 5 hours or so, but I can say that it when Jen had to run again, she had to wear her night vest, so it was certainly after 6pm. Obviously, my memory and sense of time were not so good at this point. But in the time that van #1 (i.e. us) had ‘off’, the folks in van #2 ran 37.6 miles. Since I saw so little of them, I don’t know a lot about the difficulties and lengths of each person’s leg. I know Al had the longest leg of the race as runner #11… he ran 9.8 miles. Andy had a pretty tough leg as runner #7 with some serious hills and pretty long distance. But I would hope if anyone from the other van were reading this blog, they might put some comments here about their respective runs!

We met them, as I said sometime after 6pm – maybe even later – for our second set of legs at Clear Spring High School. The high school had some places for people to sleep (in the gym) and allegedly had showers and spaghetti dinners for a low price. Apparently they were out of spaghetti by the time our van #2 team mates tried to eat 😦

A comment here about the discrepancy between vans 1 and 2. Van 2 I think had it worst: they ran in the afternoon heat both days, had the worst night time hours, and apparently had some tough times at the exchanges. I think they did indeed have a tougher time of the race.

I won’t comment on everyone’s remaining legs in the interest of this being already a lengthy description of the race. But van #1 ran our night-time legs through some more rural areas of western Maryland and met up with van #2 again after midnight in Boonesboro, MD. The exchange was at a large church that was selling some dinner items that were less than optimal for a race like this. They had things such as chili dogs and sloppy joes. What I think we more important that the church gave us, was a wide open field… to sleep in. I think Jen Siess managed to get a picture of this make-shift campground. But it was quite a sight: people were literally just sprawled out in the wide open on blankets and sleeping bags, just sleeping wherever they could! We stayed there until about 3:30 am (so a little less than 3 hours sleep). We were actually awoken by the only 5 minutes or rain we had during the entire race, but it was very timely.

We met van #2 around 5:30 am (I think??) in a very, very, very crowded exchange at Absolute Auto in Dickerson, MD. We really did not see van #2 at all due to the crowd. They were also VERY tired and went off somewhere to get some sleep.

We (van #1) ran our last set of legs, totaling 32.7 miles through suburban Maryland. I actually ran through Gaithersburg, MD around 9am on Saturday morning, which is where the OIF has it’s national headquarters. I never saw it or anything, and it certainly wasn’t planned, but that was an interesting piece of trivia.

We passed the baton to van #2 around 10:30 am at Parkland Middle School in Rockville, MD. Jen Siess was unfortunately not feeling well at this point due to some dehydration and just overall tough physical exertion. After passing the baton, we took some time for all of use to recover, drink some water, and rest a bit.

We in van one were done! At this point we capitalized on having Brian in the van and went to his house to shower up. I think I literally passed out in the van when we drove to his house. When we arrived at Brian’s, we met up with my wife Mary and son Matthew. Matthew was busy pretending he didn’t have OI and was cruising around and playing at the bottom of the steps. I’m always encouraged when I see him standing!

We headed off to the Gaylord hotel at the National Harbor to wait for Jeff to cross the finish line. We arrived at about 1pm for some lunch first. (I remember working on the traffic plan for National Harbor when I worked at Wells 7+ years ago!!) Van #2 arrived (without Jeff, obviously) shortly before 3pm. We mingled a little bit and enjoyed some of the snacks and ice cream laid out, some free, some for sale. The team got to see Matthew a little bit who was already becoming cranky from no naps.

I’m glad Jeff got the honor to cross the finish line. He’s been our team captain, and he’s done a lot of work to get everyone in order for the race. When he arrived, we all ran across the line with him for the last 50 yards or so. While we’re still waiting on official results, the big clock at the finish line raid 3:52 pm… meaning it took 31 hours and 22 minutes. I for one am happy with that. It means that we averaged 9:20 / mile over some tough terrain, through the night, and everywhere else.

In all, I of course had a lot of fun. In our “after action” e-mails, it seems like others were pretty happy, too! I’m thrilled to have raised a significant amount of money for the cause. I got to spend some time with friends. Oh yeah, I got some exercise too!

Thanks everyone!

Team mates! Feel free to post pictures and links in the comments below!

Recovery and Progress

August 15, 2010

Wow… so it’s been about four weeks since I wrote anything on this blog. That’s not so good. Today, I’m going to write a little bit about Matthew’s personal recovery and then about my increasing progress to get ready for our race.

If you’ve read this blog, or been anywhere around me for the past few weeks, you’ll know that Matthew had surgery in July on his left leg. He had broken his very crooked leg, and the surgeon felt the time was right to insert rods into his left femur and tibia. This put Matthew out of commission for a period of about 3 and a half weeks while he was in a spica cast. I’ve head doctors (orthopedists, even) refer to a spica cast as the last legal form of torture.

Matthew somehow seemed to take this in stride. He quickly learned how to roll over and then to crawl, all while wearing a cast that locked his entire leg in place, including keeping his hip locked into place. I have simply been amazed at his resilience; I cannot say I would take it very well if I was in that situation.

Well, that cast came off on Tuesday of this past week (Aug 10). It was a bit emotional for us, because it’s the first time we saw his leg straight! Since coming home, Matthew’s been regaining his strength and figuring out how to crawl all over the house again. As he gets stronger, I wouldn’t be surprised that he starts trying to pull up to stand and cruise again (which caused the femur fracture back in early July to begin with). I’m encouraged to watch him get around again.

Several people have asked me what the plan is for his right leg. The simple answer is we don’t quite know right now. Putting rods into that leg is also likely inevitable, but Mary and I have chosen to wait a little bit longer to allow Matthew some freedom and rehabilitation time. His right leg was/is not as bad as the left leg, and we would like to see him be a kid for a little while before subjecting him to that.

My wife Mary put together this thank you montage when my coworkers were kind enough to send Matthew a gift while in the hospital. but you can see before and after shots of his legs

“So, John,” you might say, “Matt’s recovering. Glad to hear it! How’s your training going?” Well, it’s improved, and continuing to improve. If you do not know, I am participating in a relay race this fall to raise some funds for the Osteogenesis Imperfecta Foundation (OIF). There are 12 of us running in a 200 mile relay race from western Maryland to the National Harbor just outside of DC in late September. Each of us will run three legs each, anywhere from 4-10 miles per leg. There’s probably an average of 12 hours in between each leg of the race, meaning that sleep is going to be a problem. The race will probably take about 30+ hours, starting on the morning of Friday Sept 24 and going until we’re done on Saturday the 25th.

My team mates include folks returning from last year: Jeff Kent, Chris Reinhardt, Jen DeLecce, Jen Siess, Al Waineo, and Dave Grossweiler. And new this year we have: Karena Swisher, Andy Gotchel, Brian Verhoven, Sandy Ambrose, and Todd Baker. The idea to participate in this relay was Todd’s. It was very unfortunate last year that after he went through the effort to drum interest in the team, Todd was called into active service in the US Navy. I say ‘unfortunate’ because Todd never got to witness the race; he went to Afghanistan for the past year. We’re looking forward to Todd’s imminent return from Afghanistan, and he’ll be participating in the race after being in the States for only three weeks! I for one have enjoyed reading Todd’s impressions of service and his obvious dedication to family and country. Maybe you will too

If you’ve known me for a long time, you know that running has never exactly been “my thing”. It’s only relatively recently that I started running, beginning with the Army 10-miler at the Pentagon back in 2006. Since Matthew’s surgery, I’ve been steadily increasing my weekly workouts to prep for this relay.

I took a week of leave from work to stay at home when Matthew first got out of surgery, and found myself only able to run once during that week, for a whopping four miles. It did not go particularly well.

Mary and I had originally planned on two weeks of vacation with our respective families at the end of July / beginning of August. Matthew’s surgery cut that a little short. We did go for one week, split between our families. Matthew really couldn’t enjoy the ocean the way a not-quite-two-year-old boy should, so we’ll take him to the ocean sometime again later. BUT I did manage to get two significant runs in while on vacation: a five miler and a 7 miler. The “problem” with running at the beach is how flat it is. The important thing was simply to get some running in.

I’ve done a handful of Saturday morning team runs that have included running the steep hill at Mary Washington Hospital with various degrees of success. I’m grateful that I’ve had team mates who have pushed me to improve myself.

This week, I’m proud to announce that I’ve run 23 miles. That is quite the improvement. On Monday and Tuesday of this week, I ran 4 miles each with Alex and Dan at work; the humidity all but killed us. On Thursday, I ‘cheated’ and ran 7 miles on a treadmill. But at least I got a full hour of running in. Then on Saturday, I ran through battlefield park with Chris, Al, and Jen Siess from the team. We put in 9.5 miles, to include all the hilly wonderfulness of that park.

This was a serious mental hurdle for me to clear. This run was at least as hilly as any of my individual legs in the race itself, and longer than anything I’ll have to do that day. My longest leg is “only” 7.4 miles. Now that I know I can run further than that, I’m a lot more confident I can do this.

So as we’re just a little over a month away from the relay race, and my running ability has drastically improved over the last month or so, I’m once again asking my friends, family, and coworkers to pledge funds to the foundation as we get set to run. Take a look at the team site for a Bunch Of Nuts Exercising : and click on the “Support B.O.N.E.” link if you would like to donate to the cause.

Return from the hospital

July 19, 2010

Well, this blog has really been established to write about my progress towards training for the big relay run this fall as we raise funds for Osteogenesis Imperfecta. I’m not going to speak to the training and running is this post; I’m going to talk a bit more about the condition, and more specifically Matthew.

I imagine that most people reading this are already familiar with the Young family’s recent goings-on, but I’ll try and summarize here anyway. Matthew’s been cruising for some months now. It’s been scary because we know how bent his left femur has been. You can see it in this X-ray which was only taken about a week ago:

Obviously, all his leg bones are bowed, but this left femur in particular is bad, with about a 90 degree bend in it. In fact, it was this same bone that showed up on sonograms while Mary was still pregnant with Matthew that allowed them to diagnose the condition.

Last Saturday, Matthew was cruising around and fell. This X-ray is actually from the ER trip trying to find a break. Doctors really couldn’t see anything – they’re not to blame, his bones are really not dense (“osteopenic”, to be technical) and fractures sometimes don’t show well on x-rays. What I did find frustrating about that ER trip was that the doctor categorically refused to prescribe something for his muscle spasms. The spasms are a result of the shock to the nerves and muscles of having bone stuck into them. When the ER discharged us, they did splint his leg and told us to follow up with an orthopedist on Monday. Well… that weekend, Matthew really didn’t get any sleep. The spasms kept waking him up and causing him pain. Mary and I slept in shifts to stay up with him.

On Monday, we saw an orthopedist in Richmond who is familiar with OI, and in fact has performed rodding surgeries on our friends and mentors who’ve coached us through living with OI (the Quann family). Dr. Sharps (the orthopedist) immediately recommended that we should rod Matthew, at a minimum, his left leg. He was a man after my own heart with his logic:

1) That leg clearly needs a rod. It’s GOING to break, badly. If we can prevent a major break, we should
2) Matthew’s got what apparently is a minor leg break right now. Let’s rod him while he’s down anyway.

The risk was that they might be unable to put an F-D rod (Fassier-Duval rod) into his femur which would be preferred over a Rush rod. First, it will actually expand with the child’s growth – to some extent anyway. Secondly, it’s less invasive to put the rod into the child. A rush rod is basically just a solid piece of metal that will likely have to be replaced in 1 – 2 years. The F-D rod is preferable because it is theoretically a longer period of time before Matthew would outgrow it and it would have to be replaced, but it requires a thicker bone. But the risk of “only” having a Rush rod in his femur was ultimately OK for Mary and I – we felt that something had to be done for Matthew before he had a big, complex fracture.

I need to make a shout-out to the OIF here – the charity for which my relay team is raising funds. Mary was diligent about reading some literature we got from them years ago and re-read the chapter about rodding surgery. (Apparently the rule-of-thumb is that when a bone has a 40+ degree bend in it, it’s time to have surgery). We were also pleased to see Dr. Sharps had actually written a chapter about OI elsewhere in the book. But without the OIF providing these kinds of resources, the decision to rod now or wait until later might have been significantly harder.

So, this past Friday, we took Matthew to St. Mary’s hospital in Richmond for surgery. Handing him over to the anesthesiologist was probably the hardest thing I’ve ever had to do as a parent. But both the anesthesiologist and Dr. Sharps took all the time Mary and I wanted to have our questions answered before taking him in. I was happy with both their bedside mannerisms.

The surgery itself took only about 2.5 hours. The nursing staff was very good to call from the OR, so we received regular updates, which I really appreciated. Dr. Sharps even came to see us in the waiting room when it was over to show us the X-rays of the rods he inserted (which I put in here). He had to cut Matthew’s femur and tibia to insert the rods. What was great and surprising (to me, anyway) was that he only had to cut each bone once. Despite concerns ahead of time, he was able to use and F-D rod on his femur – which is great news!

We were sent to the PICU waiting room to wait for Matthew to come from recovery. So we saw him relatively quickly after the surgery was over (although it didn’t FEEL quick). They put a spica cast on Matthew’s left leg, which effectively locks all his joints – hip, knee, and ankle – in place. The spica is difficult. Diapering is hard. Transportation is hard (in fact, we had to get a new car seat – which will be an insurance debacle, I’m sure). Moving him around the house is hard. We ultimately had a two night stay in the PICU while they monitored Matthew’s pain. We were discharged on Sunday after the staff was confident that he no longer needed heavy narcotics for pain.

Matthew will have a follow-up appointment this coming Friday. They’ll see how well his bones are adhering / healing to the rods as well as how well the osteotomies (deliberate cuts in the bone) are healing. From there, they can determine just how successful the surgery was, whether there were complications, and hopefully estimate how long he’ll be in the cast (maybe 2 or 3 weeks?).

In all, we feel the surgery was successful. Mary and I were incredibly anxious leading up to the surgery, and feel incredibly relieved that it’s over. What’s important is that Matthew’s left leg is now straight! And when it heals, he may be cruising even better than before. Or (God help us) walking! I guess time will tell that, too… but I am very hopeful now.

Some of the decisions we need to think about now are whether or not to rod the right leg, too. His tibia probably qualifies based on the 40 degree “rule”, but his right femur is relatively straight. Although, historical x-rays show that it is gradually bending more and more. We will consult Dr. Sharps on Friday’s follow-up regarding this.

A lot of people have been concerned about Matthew, prayed for us, and wished us well. So to all of you: Thank you! Matthew seems to be much more himself then when he was in the PICU. He’s bright and alert and has already figured out how to roll over and move a little bit in his new cast. I will always be thankful that there are friends and family out there who truly care.


PS – if you ever find yourself in need of surgery or bone repair: There is a new substance known as “kryptonite”. (http://www.kryptoniteusa.com/) It sounds like science fiction – but it essentially liquid bone. A surgeon can use this substance to DRASTICALLY reduce healing times. Scientists harvest amino acids from castor plants and mix it with calcium and potassium. When this is put into a break or surgical incision, the body’s bones will treat this substance as its own bone and ultimately grow new bone into the kryptonite. Mary and I declined (for now) because it’s relatively untested with OI patients.

Training on the Road

July 5, 2010

There were two things that happened in the last week or so that are relevant to our relay team’s preparation.

First is a comment about my own preparation. I spent the last week out of town – in San Fransisco if you’re curious. When you’re on the road, it’s very hard to do anything “normal”. I know I didn’t eat healthy at all – every meal was out to eat. BUT – as I was packing at the beginning of last week, I insisted on taking my running shoes and some gear to run at least twice. That wasn’t a small feat considering the size of my suitcase, and the need for clothing for five full days.

Apparently, the desire to run twice ended up being a bit optimistic, but I am happy to say that I got one three mile run in on Tuesday. Three miles is completely a guess, which I make based on the length of time I was listening to some music. I am a little disappointed that I only ran once in the span of a week. If I’m going to be serious about getting ready for the relay race, I’ll need to do better than that. Now that I’m back in VA, I intend on getting several more miles in this week. In fact, it is my intention to aim for six miles tomorrow morning.

The second piece of news is that our team has arrived at a real name: B.O.N.E. – Bunch O’ Nuts Exercising. I like the double-meaning for the bone condition while acknowledging that there is a certain level of crazy needed to do this run!

And lastly, I have to put in a bit about Matthew. There’s been nothing serious on the OI front, and as my grandmother used to say “no news is good news”. He has been a bit sick this week, but we’ve had our doubts. We were briefly concerned he might have a “hidden” fracture in a rib, or possibly in his jaw. He definitely seems to have some mouth pain, but he also cries out when he coughs. So… all that said, he’s been recovering since I returned from the west coast on Friday. He also got a pair of orthopedic shoes this week that have a lift on his left leg to account for the difference in the length of his legs. He’s still learning to get around in them.

I hope that you’ll keep reading these posts – which I hope become more regular updates on running and Matthew – and cheering us on while we get ready!

Check out our team webpage! Bunch O Nuts Exercising

Time to Get Started!

June 19, 2010

For starters, thanks for reading this new blog.   The whole point of this blog is to track the progress of our Ragnar Relay team and bring some awareness to Osteogensis Imperfecta (www.oif.org).

Twelve coworkers and friends got together for a new and exciting challenge – running a 200 mile relay race from the West Virginia panhandle all the way to RFK stadium in downtown Washington, DC.  The race took about 36 hours, and we all had our turn running through the night.

Of the 12 from last year, we have at least nine returning to run the relay race again.  Some have kept in better running shape than others.  Admittedly, I am not one of those in peak running condition (also, I wasn’t the best in race in September, either!).  So, this blog, along with the page we are running at the Osteogenesis Imperfecta Foundation’s website will be a fine opportunity for myself and others to discuss their progress towards the final goal.

When we run the relay race in the fall, each of us will have to run three legs apiece, average about 5-5.5 miles per leg; about 15 – 18 miles per person.  The legs vary in length and difficulty.  My personal goal, is to be able to “comfortably” run 15 miles at once prior to race day.  The longest runs I’ve ever done were the Army 10 miler in 2006 and my first leg of the relay race last year at around 8 miles.  So for me, this will be a personal improvement (and will hopefully help me lose a little weight too) .

I’s my goal to raise some funds and awareness for OI.  My immediate friends and family of course know about my son Matthew’s condition.  Matthew has Type 3 OI which manifests itself most prominently in very brittle bones.  At 18 months old, he has broken about 12 bones… which is about 12 more than I’ve ever broken.   The condition is a genetic disorder in which the body makes collagen incorrectly or in insufficient  quantities.  The collagen is the basis material for the body’s connective tissues and small stresses can cause severe bone breaks.  As the months progress, I’ll do my best to incorporate information about OI in general, Matthew Young, or some of the other families and children we’ve met that deal with the condition.

I hope that as we go on, you keep an eye on our progress, and consider donating to the cause.