Placeholder for Select

Placeholders are a nice option for styling and labeling forms without taking up space for a separate label for each input. However, select boxes do not have a placeholder parameter. The style of having gray text as a placeholder in the select box and darker text for the options can be recreated with two lines of CSS.

form select { color: #999; }

form select option { color: #000; }


Making a Trip to Universal with a Tween and Teen Magical

Universal-boysWe recently took our tween and teenage sons to Florida and spent several days at Universal Studios. We bought wands at Ollivanders, rode the Hogwarts Express, tried Butterbeer -- only the teenager actually drank it, wholy moly is that stuff sweet -- battled with Optimus Prime and escaped The Mummy. A dream family vacation, right? It was, except they complained. They complained so much I wanted to stick my fingers in my ears and start screaming at the top of my lungs at least once every day of our vacation. Here are a few things I’d do differently the next time around.

  1. The Single Rider Line. They will beg you to buy Fast Passes. Do not do it! At around $80 per person (prices seems to vary) you are sure to regret it when your Visa bill comes in. Our boys were infuriated watching people stroll past us while we stood watching the minutes tick by. This wasn’t so bad on rides where we didn’t have to store our belongings in lockers because they would play on their iPods. However, waiting for the water and roller coaster rides was painful. When they finally accepted we weren’t budging on the Fast Passes, they started begging us to use the Single Rider Line. My husband and I weren’t keen on the idea of splitting up at first. We’d saved for a year for this vacation and it was family together time, damn it! But if you’re kids are big enough to ride without an adult and you’re not planning on buying a family photo from the ride, it’s a pretty good idea. You still stand in line together, but for minutes rather than hours, and get on the ride within minutes of each other. Not all rides have Single Rider Lines, but it’s usually the really popular ones with the long lines that do.

  2. Make everyone memorize the locker number. After several days of nonstop fun, your brain is going to start turning to mush. There are many wet or action packed rides that advise or require storing your belongings in a locker. Often in a situation where I want to make a note of something I might forget later, I take a picture or make a note on my phone. This is something you can’t do when you are storing your phone inside the locker for safe keeping. After one such ride, we spent fifteen minutes with a rather annoyed staff member insisting we had stowed our belongings in one particular section when we were actually in the next section over. Our children were thoroughly annoyed we were not fulfilling our parental responsibilities of complete omniscience. Make everyone memorize the locker number so you’re not that family.

  3. Pack sugar. Everyone knows park food is expensive and that water is worth its weight in gold once you enter the gates. Every day I packed water, sandwiches, protein bars and other snacks. Every day we ate and drank all of it. You’re only allowed to carry in so much food, so there wasn’t room for too much more. However, I was trying to be healthy on top of being cost conscious. I should have packed bags of candy on top of everything else. The last thing you want to be dealing with while standing in line for over an hour is a teen or tween on a sugar crash.

  4. Always pack the flip flops. If you are spending an entire day walking around a park, it’s probably advisable to do that in sneakers rather than flip flops. However, few things are worse than walking around in wet socks and sneakers following a particularly drenching ride. If you happen to have a teenage boy that is coming off of two weeks at camp, this will be the final straw to him developing trench foot. Said teenage boy now owns a lovely second pair of $30 flip flops.

  5. Always say yes to ridiculous, free fun. One night as we were walking out of the park, we bought ice cream and were lingering in the promenade. There was a fountain area with a grid of spouts that shot up from the ground at different intervals. The boys started trying to time it so they could walk all the way across without getting wet. I could have stopped them. I knew they were going to get soaked. But I let them. They danced and jumped around the spurts of water and laughed their fool heads off without a care or complaint to be heard.Making a Trip to Universal with a Tween and Teen Magical

Trex


Our Family's Journey Through CRPS

An edited version of this essay was published by You&Me magazine.

“Do you remember where we were this time last year?” I ask my son as he sits on the brown leather couch in our living room, snuggling with Allie, our little Yorkie Schnauzer.

“No,” he responds, burying his nose deeper into Allie’s short summer coat.

“Wisconsin,” I tell him.

Cole_allie
Cole holding Allie

Cole raises his head. His eyes grow wide as the meaning of what I’ve conveyed with one simple word, one place, is acknowledged.

“Don’t remind me of that!” he practically shouts, directly followed by his returning his attention to Allie and yelling, “Squirrel!” which never fails to cause the dog raise her head and ears to full attention and start searching for something to chase. Cole finds this hilarious. He is an eleven-year-old boy after all.

Cole does not want to remember or discuss the trauma he, and subsequently our entire family, went through for an entire year. The climax of that year was a surgery that took place halfway across the country in Wisconsin. Since his surgery, his recovery has been nothing short of astounding. No one looking at him on the baseball field today would know that most of last year he couldn’t walk and was in so much pain he missed most of fourth grade.

Cole would like to forget this ever happened, but I don’t want to forget. I had no idea that a perfectly healthy, athletic child could become disabled from what seemed like a very minor injury. I had never heard of Ehlers-Danlos Syndrome (EDS) or Complex Regional Pain Syndrome (CRPS) formerly known as Reflex Sympathetic Dystrophy (RSD) before he got hurt. Suddenly, I was forced to watch my child sink deeper into pain every day, unable to feel or move his foot, while I felt completely helpless. As a mother, and simply as a human being, I have never been so scared, so lost, or so horrified by how hard it can be to find help.

Cole_football
Cole is his football uniform

On October 22, 2013, Cole was at football practice and during a tackle was hit in the ankle by another child’s helmet. He sat out for a little while but then rejoined practice. His ankle was bruised and we iced it and gave him ibuprofen. We really didn’t think much of it at the time. Over the course of the week, Cole continued to complain about his ankle. We kept him out of football and told him to rest his ankle as much as possible. When it still wasn’t feeling better come Monday, my husband took him to a walk-in clinic to have an x-ray. We feared he might have a hairline fracture or sprain. If it had only been that simple. Cole was misdiagnosed with compartment syndrome and referred to an orthopedist. 

What followed was a month of doctors appointments, tests, repeated trips from our home in Rhode Island to Boston while we desperately tried to figure out what was happening to our son. Within weeks, Cole lost all feeling in his left foot and developed extreme pain from his ankle to his hip. He was evaluated by our pediatrician, an orthopedist, and two neurologists. He had blood work done and it came back normal. But the slightest touch to his leg caused him to writhe and scream in agony. The commutes back and forth to Boston were excruciating for him. Even with his leg propped on a pillow and blankets for cushioning, he not only felt every pot hole, but every seam in the road. So when doctors attempted an MRI, which required placing plastic cameras on his leg, there was no way he could stay still for it.

Several of the doctors that examined our son told us the pain was all in his head or that he was exaggerating it. I found out later, upon joining an online support group for parents of children with RSD, that this is a common response from doctors. I never doubted Cole’s pain. I have a vivid memory of Cole at about six-months-old, lying on his stomach in a few inches of water in the bathtub. He would put his face in the water, then raise his head, shake it back and forth and let out a roar. He repeated this a number of times before dropping his head too quickly, banging it on the bottom of the tub. He lifted his head and his lip was split and bleeding. He paused for only a moment, then smiled, shook his head and roared and kept going. This is Cole’s personality in a nutshell. If he says his pain on a scale of 1 to 10 is a 15, then it is a 15.

Eventually, Cole was diagnosed with CRPS and put on Gabapentin. Gabapentin is used primarily to treat seizures and neuropathic pain. I was surprised to learn that narcotics are completely ineffective in treating nerve pain. He was referred for physical therapy.

Cole’s physical therapy was absolute torture for him and everyone involved. My husband took Cole to most of these appointments, partly because being self employed his work schedule was more flexible than mine, but also because he had to physically restrain Cole while our physical therapist worked on Cole’s leg. I wasn’t strong enough to do this effectively, though there were times when my best had to suffice. Cole would hit, kick, and even bite during these appointments. In the beginning, part of Cole’s treatment involved running a thread up and down his leg to desensitize it. Cole described this as feeling like a chainsaw sawing his leg off.

Cole_leg_difference
The leg with tape has CRPS

For someone not familiar with CRPS, the concept of how much pain it causes is hard to wrap your brain around. The pain associated with CRPS is ranked higher than childbirth and amputation, and it can come without too many other medical factors presenting. To look at Cole’s leg, it was hard to see there was anything wrong. It was slightly off color and mottled but only if you were really looking for it. This makes it easy for people, even those in the medical profession, to brush aside how serious the condition is. Not only is there very little to see with the naked eye, there’s often nothing to see in blood work, x-ray, MRI or any other test performed, which leads to something else that’s difficult for an outsider to understand. Family and friends breathed a sigh of relief every time one of Cole’s tests came back negative. But the more and more tests showed nothing, the more and more panicked my husband and I became. Something was very terribly wrong and every time a doctor showed us Cole’s normal test results and said he was fine, we wanted to scream.

CRPS is a known medical condition, but finding treatment is all too difficult and confusing. What works for one patient often does not for another. Much remains unknown about this condition and how to treat it.  Unfortunately, parents need to be wary of the very people and places they rely on for medical treatment when it comes to CRPS and their kids. Emergency room doctors will attempt to physically examine your child, even though you explain it causes extreme pain for them to be touched. They just aren’t trained to deal with it. Cole would struggle to crawl under the gurney to hide from the doctors and nurses. This behavior persisted with every doctor he visited for months, adding evidence for some that what was wrong was a mental issue. Even more disturbing are recent stories  of children with poorly understood medical conditions being taken away from their families. Parents who refuse to accept a mental diagnosis for what they know to be a physical illness risk having their child placed in state care due to suspicion of medical child abuse.

How could these experts send us home with a child who was “fine” when he couldn’t go to school, woke up crying every day, had trouble sleeping at night despite the Melatonin or Ibuprofen PM? Every day he was regressing and withdrawing further under the strain of the relentless pain. He became less verbal, started refusing to work with his tutor and didn’t want his friends to visit. Alternately, he became more angry and violent. He would kick and punch us when we tried to change his clothes, give him medication or bring him to the doctor or physical therapist. He screamed and swore. He threw things and slammed doors, sometimes in the middle of the night, just to wake everyone up. He drew pictures of being blown up with his leg ripped off. He destroyed photos of himself and started lighting things on fire. Of course we tried counseling--two different counselors, neither of which helped. Unless we count the improvement in Cole’s behavior when we promised him that he would no longer have to attend if he stopped behaving so dangerously and abusively.

We are a family of four, two working parents and two boys, at the time this started, ages 9 and 12. Cole had to be removed from school at the start of November 2013 and did not return until after February vacation in 2014. We had to reach out to family and our former nanny to have someone home with Cole during the day. We left Cole in the same clothes for days at a time because changing them was a long and painful process. Our older son, Connor, never understood or was sympathetic to his brother’s plight. This added even more strain to our already very tense family dynamic. I tried repeatedly to explain to Connor that what his brother was dealing with was beyond any injury he had ever experienced but he never got it. They had always been two rowdy, active brothers and Connor could not accept the fact that his brother couldn’t even be touched or jostled in any way now. In Connor’s mind, we were overreacting and cared about Cole more than we cared about him. Cole didn’t have to go to school, could stay home and play video games and Connor got screamed at every time he touched him. We put Connor in counseling during this time as well. It did not help at all.

As the saying goes, “when it rains it pours”,  and it turns out Connor did have a point that he wasn’t getting enough of our time and attention while we were focused on dealing with Cole’s CRPS. In October of 2014, Connor was diagnosed with Osgood Schlatter’s Disease . Over the course of the past year he had been complaining of pain in his left knee as well and was forced to stop running track and swimming. He was seen by our pediatrician, an ER, a walk-in-clinic and twice by a pediatric orthopedist, and had two sets of x-rays. Everyone told us that Connor was fine, and since he was if he wasn’t involved in a sport, and because we were highly distracted, we shrugged it off as normal growing pains. It is also very hard as a parent to accept that your older child has developed pain in his left knee while your younger son is battling CRPS stemming from an injury in his left knee. While I was not inclined to believe the pain was in Cole’s head, I did wonder if the pain Connor was experiencing was psychosomatic or at least being exaggerated. Connor felt quite vindicated when he was eventually diagnosed at a local walk-in clinic. He was also referred to physical therapy to ease the strain on his knee by increasing his flexibility and strengthening his hips. For several months we had two children in physical therapy for a total of five appointments a week.

Cole_fishing_leg_brace
Cole wearing his leg brace

Between October 2013 and December 2014, my husband and I lived in crisis mode every day. There were some days, weeks, even a couple of months, where we were almost lulled into a sense of normalcy. Cole did manage to attend school between the end of February until the end of April. He had a brace that strapped around his calf with a base that slipped under the lining of his shoe. It held his foot in position so he could walk even though he still couldn’t feel or move his foot. His pain never went below a 6 and he was still in physical therapy three times a week. He experienced a major setback the first weekend of May after playing catch in the yard and throwing a tennis ball against the garage. CRPS might not appear completely debilitating when you see a child play outside like this. Cole looked like a normal kid playing outside that day, except for the brace on his leg. However, by that night he was in absolute agony again. He never made it back to school that year.

Cole’s physical therapist, pain doctor and pediatrician were key in treating Cole’s condition. Even when other specialists told us the pain was all in Cole’s head, our pediatrician was a voice of reason. “Cole does not respond to having a needle poked in his foot,” he told us, “You can’t fake numbness.” The pain doctor increased the Gabapentin the neurologist had prescribed. He put him on Ketamine for his pain flares and also Valium to counteract the irritability and violent behavior the Ketamine exacerbated. He took the temperature of both of Cole’s legs. The left was 18 degrees colder than his right, another sign that something was physically wrong. He added Low Dose Naltrexone to help with his circulation as well as the pain.

With the medications helping to lower Cole’s pain, the physical therapist was finally able to gain more hands-on contact with Cole’s leg--not that Cole cooperated, my husband was still physically restraining him, but he was less violent during the sessions--and tell us what the x-rays and failed MRI could not. His fibula was subluxing, actually dislocating,  80-100% out of joint. The hit to his ankle had popped his fibula in at the ankle and out at the knee. Not only was this painful on its own but it was also putting pressure on his peroneal nerve. The orthopedist had already told us that his peroneal nerve was somehow compromised--causing his numbness, foot drop, and consequently the CRPS--but now we knew what was damaging the nerve. It was also the pain specialist and physical therapist that told us they suspected Cole had EDS. A genetic test would later indicate he does not, but these tests are not definitive, so it’s hard to be sure.


After wearing a leg brace to enable him to walk, months of physical therapy, and attempting electronic stimulation, Cole was eventually referred to an orthopedic surgeon in Wisconsin who specializes in patients with EDS and CRPS and has experience operating on children. Cole had an allograft  to stabilize his fibula on June 10, 2014. He came out of surgery in a full leg cast and immediately wiggled his toes for the first time in eight months. My eyes sting with tears just remembering it. While Cole did have some pain after the surgery, I am sure now that it was simply post surgical pain and the swelling of his leg in the cast. His CRPS went away as soon as his fibula was stabilized and his peroneal nerve entrapment released.

During Cole’s surgery I took several weeks of family leave to travel out of state and then care for him our first week back home, but otherwise we were both juggling full time jobs and Cole’s medical needs as well as Connor’s. It took everything my husband and I had to go to work and care for our boys. We both had moments when we completely fell apart. One night I came home, exhausted from the previous night spent in the ER after long days at the office. My husband was leaving for work, Cole was in full on tantrum mode. I collapsed on the floor and started sobbing. Sometimes these breakdowns can be beneficial. I’ve never been one to cry and the sight evoked the first signs of compassion we’d seen from Cole in months. Another day my husband called me at work beside himself after a trip to the physical therapist. He told me he couldn’t keep going through this with Cole every day. He had scheduled an appointment for Cole to be seen by a surgeon in Wisconsin in three weeks. In the moment I was shocked, but we had definitely exhausted our options.

A number of my friends joked with me, that I must really need a drink at the end of the day. I rarely had the luxury. As any parent knows, you’re never really off duty. If your child is up sick in the middle of the night, that means you or your spouse is up in the middle of the night. Cole was in extreme pain all the time with the CRPS. If his pain flared, we had to be prepared to jump in the car and drive to the hospital. Even when we learned that the emergency room wasn’t able to offer us any help, we had to be prepared to deal with his incessant pain our own. The whirlpool seemed to help, so sometimes in the middle of the night we’d find ourselves drawing him a bath and helping him into the tub. We’d also keep doling out medication, Ketamine and Ibuprofen PM, in the incremental ways we’d been instructed by our pain doctor until we could finally get him to pass out. Blessedly, once he fell asleep, the part of his nervous system sending the pain messages would shut off, and he could stay asleep. But it would all start over full force the minute he woke up the next morning.

Cole_cast_off
Cole after getting his full leg cast removed

Cole’s CRPS subsided immediately following his surgery, but the remnants of it stays with us. Once someone has experienced CRPS, that person has a predisposition to get it again following an injury. For this reason, Cole is prohibited from any contact or high impact sports, so football, soccer, basketball, hockey, as well as a number of others, are prohibited. He also can’t participate in any activity that can cause great strain or twisting of his knee, so no trampolines, skiing, snowboarding, skateboarding . . .  you get the idea. Unfortunately, Cole is now an eleven-year-old boy and the more he feels like his old self, the more he wants to participate in his old activities. I worry that one of these days, when I’m not looking, he’s going to jump on a friend’s skateboard and this could start all over again. I hold my breath every time he slides into base during a baseball game. It’s not a high impact sport, but that doesn’t mean he can’t get hurt. I’ve had people suggest that I pull him out of sports altogether and have him take piano lessons instead. Let me tell you, there’s a part of me that would love to put both boys in bubble wrap, but I can’t do that. Cole lives to run around and play sports. His first word was ball. Trying to take all sports away from him would make him miserable, and it would only make him more likely to take part in them when my back is turned.  

I was not at all prepared for the nightmare of CRPS, but my son did survive, our whole family survived it. I continue to read posts in the support group of all the children still suffering in pain and I can’t help that feel that part of Cole’s recovery was just blind luck. These parents are seeing the same doctors, trying the same drugs, treatments, and surgeries, but many have not been as fortunate. There were no clear cut answers or treatments for us to follow.  My husband and I found ourselves making medical decisions we always expected a medical professional would make for us. We had to keep researching, talking to other families dealing with CRPS, meeting with various doctors and experts until we finally found the answer for our son. We flailed the same way these other parents are still flailing and we got lucky. We dodged a bullet and we still aren’t sure what we did differently from a number of other families.

As I watch Cole snuggle on the couch with his dog, I still see the shadow of the pain that plagued him for eight solid months without mercy. I feel the temptation to force it from my mind, like I know he does, and pretend it never happened. I want to focus on all of the fun and joy that has returned to our lives; watching him play baseball, a summer just beginning and full of the promise of beach days and a family vacation. And I will. I will embrace the joy and the fun. I will also remember and tell the story of his pain. So when it happens again, to my son, or to someone else’s son or daughter, hopefully more people will know what CRPS is, and curing that pain will not be a long, tortuous process that takes months or years.


jQuery Selector Order

I ran into an issue today with some jQuery code that worked in Chrome and IE but not in FF.

$(container).find('div.content-block').not('div.auto-height').height(height);

We use content blocks on our site and we have a jQuery function that sets the height of those blocks so they are all the same. We want to the blocks to basically be sized according to their content and don't want to lock our authors into a fixed height block. However, we can't have staggered blocks that are all a few pixels different. Our function finds the tallest block in a parent element and sets all the blocks to that height.

Of course, this is great 90% of the time, but sometimes you need to prevent the height from being set on a block. In the specific case I'm dealing with now, each block takes up a full row and has a more link to expand the content. For these cases we have a class "auto-height". In the above jQuery any blocks with that class should not have their height set. This did not work in FF.

With some troubleshooting I discovered that the order of the selectors matter. Placing not() before find() corrected the issue in FF.

$(container).not('div.auto-height').find('div.content-block').height(height);


Video Not Displaying in Firefox

I spent hours today trying to debug a problem in Firefox. I'm working on slideshow of videos using a combination of the Slideshow Manager plugin for MODx which uses Nivo slider. Once you click a graphical play button, a Brightcove Smart Player loads and plays over the slide. For some reason this was working in all browsers except Firefox, which is odd, because generally when you run into one browser that's not rendering CSS and jQuery the way you'd expect, Internet Explorer is the culprit. In this case, all other browsers tested, Chrome, IE, Dolphin, worked, but in Firefox the video was located in the DOM correctly and you could hear it play, but the video and player were not at all visible.

Working with video elements in combination with a slideshow is tricky, though. I suspected I had some issue with opacity, visibility, or z-index. I spent an hour manipulating the CSS of the video and its parent elements to no avail. I started changing the jQuery that was removing and adding the video into the correct place in the DOM when the play button was pushed. But none of this was the culprit.

The problem I discovered, as I dug deeper into the CSS and started removing all styling elements related to the video and it's parent elements until I could get it to display in the offending browser, was the hack I'd used to vertically align the player in the header of the page. 

.element { position: relative; top: 50%; transform: translateY(-50%); }

This is a rather common hack you'll see used on the web, so use with caution. Specificcally, it was the transform property that caused the video not to display in Firefox. I also attempted replacing the transform property with browser specific properties but that did not correct the display issue in Firefox.

-webkit-transform: translateY(-50%);
-moz-transform: translateY(-50%);
-ms-transform: translateY(-50%);
-o-transform: translateY(-50%);
transform: translateY(-50%);

And yes, the parent element the video was positioned in did have a height property set. 

I've done some searches on the web and have not found anyone else documenting a similar issue. I'm not sure if this is specific to the transform being done on a video element or if it's more specific to my video slideshow implementation.


CSS Grid Module

I had a great time attending An Event Apart in Boston a couple of weeks ago. There were many great speakers from the web industry. It's always overwhelming coming away the desire to channel all the new knowledge and energy from the conference, and then wonder how on earth you're going to begin incorporating the new techniques while you start to dig yourself from under the work that's continued to pile up while you were gone. 

This year I was most excited about @rachelandrew's presentation on the CSS Grid Module. The bad news is, it's still in draft stage at the W3C. The good news is, it's already starting to be supported in browsers.

Listening to these presentations every year about the newest, cutting edge technologies that are in beta stage or newly released and being touted as the new standard, you never can be sure what's actually going to launch, gain adoption and really stick. There are few things that actually do. Remember, when Flash and action script was THE way to build a website? Remember when XHTML was going to change HTML forever?

But every once in a while, something does come along that does fundamentally change the way we build websites. Like CSS. CSS was a game changer in the way we wrote and designed web pages. It put our table layouts and sliced images to shame. More recently, responsive design and media queries have started taking over the web. Now with Google's announcement this month that it will give preference to responsive websites in its search results, I anticipate an even broader adoption of responsive design in the near future.

The most recent template designs I have done have been responsive using the Bootstrap framework to supply the grid. Yes, I can see some of you rolling your eyes from here. I do assure you that the sites I have worked on for my employer are not "Cookie Cutter Bootstrap" sites. I don't know anyone who is working with responsive design that's not using some grid layout framework, whether they've written it custom or are using something out of the box.

This is why I am so excited about the CSS Grid Module.

Imagine not needing a framework because, gasp, you could define the grids as properties in the DOM elements straight in the CSS!

This kind of blows my mind. Just as the concept of laying out web pages without having to position every element in a table cell blew my mind back in the early two thousands. (Yes, I was late to the party. I was busy having babies at the time).

As @rachelandrew mentioned in her presentation, there are still some issues to be worked out. There are some gutter issues with column-gap and column-row that may get moved to the second release, and nested grids and sub grids are at risk of being moved from the initial release as well.

I for one, will be watching this module closely. I hope I find some time to play around with it and provide some feedback to the working group.


Getting Back to Normal

It's wonderful when life is blissfully "normal." After a year of living in crisis mode every day, pumping our son full of medications, watching him cry with pain every morning when he woke up, holding him down while his physical therapist put his fibula into joint three times a week (my husband got to suffer through those appointments), wondering if today was going to be another run to the ER, it's almost surreal that we don't have to live that every day any more.

Cole has had an amazing recovery. He was released from PT five months ago. He's participating in gym class, running around with his friends and playing baseball in the town league. To look at him now, you'd never know that last year he couldn't walk and was in such debilitating pain he couldn't go to school or even get off the couch. The transition into middle school was rough at the start of the year. Not only was he transitioning to a new school, he was transitioning back into school period. He suffered a bone contusion at the start of the school year and missed the first week which made the situation even more stressful. He missed that first week where none of the fifth graders (yes, in our district fifth grade is middle school) knew where they were going or what they were doing. He was walking but experiencing some pain from his bruised bone, not an uncommon injury after an allograft, and was slow. He was still sore and building up his strength. He hadn't used his left leg much for a year and had experienced atrophy even before his surgery in June and then spent five weeks in a full leg cast. 

Cole has always been a strong student and taken a great deal of pride in his grades, but after missing the majority of fourth grade, he found himself struggling for the first time. He had gone through tutoring, but that's still not the same as being in school and having six hours of instruction a day. He was stressed to the point of panic at the start of the school year. One morning he completely broke down sobbing and I had to spend an hour calming him down before taking him to school still in tears. He'd never had the experience of feeling lost or not understanding the material before. He was horrified when he received a bad grade, was late to class, or didn't understand the lesson. I explained to him that every day he attended school was a victory. That I was immensely proud of how brave he was to get through his injury and his surgery and now transitioning back to school. I told him it was to be expected that he was going to be lost for a while, that his teachers and I understood that and were here to help him. 

The day I took him into school an hour late in tears, the vice principal ushered us right into his office and re-iterated all the same things that I had told him. He also set him up with weekly appointments with a support group that met with the school social worker and told him that any time he was feeling like things were more than he could handle, that Cole could always come to his office. Cole was still very unhappy about me leaving him at school that day and it was yet another experience on this long journey that broke my heart a little bit, going to work and watching him walk with the vice principal down the hall to his class, still clearly terrified to be there. 

It took time for his stress and fear to ease. There were other mornings and evenings of homework that had him in tears and near hyperventilation. The district also issued Chromebooks to all the students for the first time and that was yet another new and intimidating adjustment Cole had to make. For months he hated that Chromebook and complained about why they couldn't do things on paper. Now he does his homework with his friends on Google Hangouts and I have to pry him away from the screen.

Slowly but surely, he continued to heal through the fall and into the winter. He started to catch up in his academics and his grades got better, he regained strength and mobility in his left leg. Now, it's almost as if it never happened. Cole has never wanted to talk about his injury and his pain, not with myself or my husband, not with doctors, not with counselors. Now that he's gaining some distance he will sometimes bring it up in conversations at the oddest times. Usually, it's in contrast with what we're currently doing. We were in the car a few weeks ago, headed to a birthday dinner, and he asked us, "Remember last year when I was in so much pain and didn't want to leave the house? That was awful."

Yes, it was truly awful, and I think for all of us, it's not that far away: the pain, the doctor's appointments, the fear, the confusion. It's always still lingering in the back of my mind. It was the first weekend in May last year when Cole experienced his relapse. He had been doing better. He was walking with a brace, had been able to attend school for a couple of months. It had only taken one day of playing outside to change all that. There was nothing specific he had done that day, it was merely the fact that he had played like a normal kid. We had played catch in the yard. He played wall ball with his friends. And he had been so happy and so upbeat. And then it all came crashing down again.

I couldn't go through Mother's Day this year without the memory of Mother's Day last year in the back of mind. It wasn't so much different. I ran the same 5K. We had family over for a cookout in the yard. And Cole can still be an ornery preteen. He didn't come outside to eat with everyone else, why I don't know, but I do know it had nothing to do with the fact that he was in pain. He did come out and play corn hole and swing with me for a while in the patio. He ran around the yard with his cousins. Watching him, I am simultaneously relieved but also still holding my breath a little. I panic every time he falls, every time he jumps, every time he slides into base. I know I'll be doing that for a while. I think he still is too.


Cole's Leg Injury

 I haven't posted much in a while. Much in my life has changed since I was actively blogging. This blog was originally a social experiment of sorts with long time and dear friends. We used aliases for fun and anonymity and much of the writing was tongue and cheek. 

My life for the last seven months has been anything but light and bantering. Cole's injury has driven us firmly into the realm of having a child with a disability. We have found ourselves floundering in the medical community with misdiagnosis, scary and horrifying experiences as we watch our son suffer, balancing stress as we've never known both trying to work full time and do right by our child. We have heard horror stories about the Pain Clinic at Boston Children's Hospital and had doctors repeatedly tell us our son's pain was all in his head.

Cole has had 60 physical therapy appointments to correct the position of his fibula. His is on nerve pain medication and has a brace so he can walk. We have tried electronic stimulation. All of this has helped to some degree but none of it has resolved his injury.

As I write this, I am in a group home for people seeking medical treatment far from home. Cole is scheduled for an allograft day after tomorrow. He will have one hole drilled into his fibula and two into his tibia. Cadaver tendon will be put through these holes and secured with stitches and small pieces of metal. This procedure should stabilize his fibula which is sublexing or coming out of joint and putting pressure on his peroneal nerve. This nerve controls the flexing of the foot. Cole has slight feeling on the top of his foot that he has regained since the injury but his foot is otherwise numb. He has foot drop which means he can't flex his foot so he can't walk without his brace which holds his foot in position for him. He also has extreme pain from ankle to hip. The pain has improved with the medications but has flared in the past month.

Cole was diagnosed by the Pain Clinic at Boston Children's Hospital with RSD or CRPS (Chronic Regional Pain Syndrome). This means his pain is inconsistent with his injury. The nerves continue to send pain messages instead of shutting off. His physical therapist and pain specialist believe he has EDS (Ehlers-Danlos Syndrome). There are seven different types as I understand it. They believe he has type three or hyperflexibility of the joints. It makes a person prone to joint dislocation. We will likely pursue testing in this area which requires a geneticist but treating Cole's current injury is our priority at the moment. What follows is our diary of Cole's injury over the past eight months.

Prior to the start of all this Cole was a very active and healthy child. He had a broken clavicle (right I believe) when he was born. It healed and was not a big deal. He had antibiotics for the first time when he had pneumonia for two weeks in the summer of 2011 at age 7. It’s the only illness of note before this. He has always been highly active. He took karate where at age 5 he shocked his instructor with his speed and strength. He’s taken swimming lessons, played baseball where he pitched and caught, and played football. He has always been an excellent student, at the top of his class.

I feel it’s important to include that when this injury occurred Cole had spent the month prior sick.

9/26/13 - Cole saw Dr. Kupperberg and was diagnosed with strep throat and he was prescribed antibiotics. He had already been sick for about a week. Cole also complained of hearing loss during this time. He never ran a temperature but he did test positive for strep and I think was on amoxicillin for a week.

10/17/13 - Appointment with ENT Dr. Tippernini. Cole never really got better after the antibiotics for strep and he continued to complain of hearing loss. Dr. Tippernini diagnosed him with a sinus/ear infection and prescribed Cefdinir 5ml/day for I think 3 weeks. Cole was feeling better but still on the Cefdinir when the injury occurred. The football practice where he sustained the injury was the first he had attended in a month.

From this time forward until November, Cole continues to complain that his hearing is impaired.

10/22/13 - Injury occurred at football practice. He was playing defense and was involved with a tackle in which there was a pile-up with many players. As a result, he was hit with helmet and shoulder pads from at least one other player in the lower left leg and ankle.  The injury occurred near the end of practice.  Still, he continued to play with the injury and finished the last 10 or so minutes of practice and limped off the field.

10/23/13-10/27/13 - He is limping and complains of some pain but is still active and running around outside. There is no pain when his leg is prostrate.

10/24/13 - He goes back to football practice but can’t finish the warm up lap.  He stays and throws a ball around to a fellow, injured player on the sidelines while the rest of his team practices.  He complains of an increased level of pain in the lower leg that evening as a result of his attempt to participate in football practice.

10/25/13- We bring him and a friend to a spook trail and although he is limping, he is able to walk of his own accord.  He is in good spirits.

10/26/13 - In the morning Brandon and Cole do the bag dropoff for Scouting for Food.  Cole has to quit after about 45 minutes because the pain in his left leg increased to the point where he could no longer walk without considerable pain.  After a +/- 3hr rest, he plays with friend outside, on and off, for several hours. Outside activity included running and playing whiffleball.  They traded off between (mostly) playing whiffleball in the side yard and playing video games inside.  Cole says that they did this because it allowed him to rest his leg enough to be able to go back outside and play.  That evening Cole complained that the pain in his left leg was significantly worse than it was before playing outside that afternoon.

10/27/13- He goes to his football game but does not play.  He is relatively inactive for the rest of the day.  It was obvious at this point that the pain and ability to maneuver his left leg is not getting better but if anything was getting worse.

10/28/13 - After realizing that the problem was not subsiding, but getting worse, we bring him to a walk-in clinic in Warwick, RI.  The Bald Hill Walk In Clinic x-rayed his left tibia and fibula, determining there were no obvious signs of stress on the bone, performed without the assistance of a radiologist.  Dr. Meinke of the Walk-In Clinic then diagnosed Cole  with Chronic Compartment Syndrome of the lower left leg. The Walk-In Clinic made a referral on Cole’s behalf  to University Orthopedics in East Greenwich, RI. After this visit to the Walk In Clinic we put him on crutches of our own accord because up until this point he had been limping but getting around okay, but the pain was getting worse and it was becoming increasingly difficult for him to maneuver on his own.  Still, he experienced no pain when his leg was prostrate.

10/29/13 - University Orthopedics referred us to Hasbro Children’s Hospital in Providence, saying that the compartment syndrome he was diagnosed with was something better dealt with by Hasbro. We wait but receive no response from Hasbro scheduling dept.  We then contact the walk in clinic and ask them instead to refer us to Boston Children’s Hospital.  At this time no pain when leg was prostrate.

10/30/13- We were able to schedule a visit to their Waltham, MA office for 10/31/13. At this time no pain when leg was prostrate.  He is fairly inactive that day, getting around school on crutches.

10/31/13 - Dr. Glotzbecker of Boston Children’s Hospital says Cole does not have compartment syndrome, but is instead diagnosed with peroneal nerve stretching/damage. He said it was an unusual injury. No further xrays or other imaging/tests were ordered at that time.  Cole had extreme pain in his lower left leg and foot by the time of this appointment but said the upper leg was okay.  Appt. time was 9:45am.

10/31/13 - Karen Morrone, DPt, DAc performed acupuncture and manual therapy for one hour on Cole at her office in East Providence, RI. We brought him there of our own accord.  Appt. time was from 1 to 2pm.  At the time of his visit with Dr. Morrone, Cole complained of pain in the upper and lower parts of his left leg. By that time he could not  bear weight on his left leg at all. Dr. Morrone determines, however, that he has reflex response in both knees. He can wiggle his toes slightly but with pain, and can barely lift his left leg. His quadricep is barely responding when he tries to move it.  It was at this time that it was determined that it wasn’t just pain that was preventing him from moving his leg, but that he was having difficulty gaining control to move his leg, period. He is now noticeably dragging his left leg while using his crutches.

10/31/13- At home and in response to questioning, Cole says his toes are tingling; specifically the top of his toes. After performing an eyes closed ‘touch test,’ we determine that he does not have sensation in his left large toe.  He can barely move his left leg whatsoever and only with considerable pain.  He is now experiencing pain when his leg is prostrate and experiences considerable pain when he attempts to move it or is even touched lightly. He has difficulty falling asleep due to pain.

11/2/13 - Cole loses his hearing completely around 6pm.

11/3/13 - On Dr. Glotzbecker’s recommendation, we take him to the ER. His hearing gradually improves throughout the day. He is in extreme pain after being examined by multiple doctors. By the time we see the neurologist he has completely shut down, is uncooperative and refuses to speak.

11/5/13 - MRI of the left leg. They are able to do the pelvis and upper leg but Cole is in too much pain to do the lower leg. He is uncooperative and stops speaking. It takes an hour to get him to leave the prep room and we have to be visited by the social worker.

11/6/13 - Examined by Dr. Kupperberg. Treated by Karen Marrone

The rest of this is written May 22, 2014

After this very strange, scary, complete and immediate hearing loss which is slowly restored over the next 24 hours, Cole never complains of impaired hearing again. His hearing is now back to normal.

11/7/13 - Neurology appointment. Dr. Fayad prescribes gabapentin 3ml/3 times a day (we gradually increased to this dose over the course of a week). By this time Cole is in extreme pain. We had been alternating every two hours with Tylenol and Ibuprofen but it is barely touching the pain.

11/8/13 - Seen by ENT at Boston Children’s. Hearing test is normal.

11/21/13 - Cole has his first PT appointment with David Sirota. Cole is told that he cannot drag his leg behind him on the crutches as he has been doing. He can’t move his leg but he can prop his left leg on his right and swing them forward. He will stop using crutches for the most part after this and will just sort of hop around on one leg most of the time.

11/23/13 - Cole begins home tutoring. His elementary school is not handicap accessible. He is terrified of being in a room of other kids, that they will bump him and touch his leg.

12/11/13 - Cole has his first PT appointment with Mike Healy. Cole sees David Sirota several more times but then sees only Mike Healy. He continues in PT mostly 3 times/ week which is still ongoing as of 5/27/14.

12/19/13 - First appointment with Dr. Chopra. There is an 18 degree temperature difference between Cole's legs. Dr. Chopra increases gabapentin to 4ml/3 times a day (gradual increase). He also prescribes Low Dose Naltrexone 2mg/day to improve circulation and ketamine 5mg tablets to be taken as needed for pain.

12/31/13 - Ketamine is taken for first time in office with Dr. Chopra. It is determined that 20mg is the dosage for  Cole’s pain.

1/24/14 - 4/5/14 - Cole has first appointment with Gershon and Associates for counseling for his anger and depression. He sees Dr. Johnstone for about half a dozen sessions. The only help they provide is that telling Cole he doesn’t have to see her anymore if he stops yelling, kicking and punching people is an incentive.

1/27/14 - Follow up with Dr. Chopra. Cole’s pain is better but only slightly. The ketamine makes him irritable and violent. His LDN is increased to 4mg/day and he is prescribed 5mg of diazepam to take with the ketamine.

1/27/14 - 2/24/14 - Cole’s pain becomes more manageable. It is apparent he is very angry and depressed. We push to have him returned to school feeling socialization and some normalcy is the best thing for him if he can handle it.

2/11/14 - Cole has second MRI at RI Hospital under sedation.

2/24/14 - Cole returns to school part time and within a few weeks, full time. He had been seeing a tutor once or twice a week and out of school since the end of October. He had started refusing to work with the tutor and would hide under the bed or in the closet when she came. We stop using the ketamine by the end of February. He does use crutches in school but only for a couple of weeks until he gets his brace.

2/28/14 - Cole is fitted for his leg brace at PTI Pedorthic Technologies. It is here that electronic stimulation is attempted for the first time. It is the first complete pain relief he has experienced. We do manage to attain an electronic stimulation device a week or so later. It is miraculous in the beginning. He does 3-4 treatments a day with it for fifteen minutes. He can walk and is pain free during these sessions. This result only lasts for a few weeks and then the treatments become painful and we eventually stop forcing him to do them.

April is a really good month. We are actually thinking about reducing his pain meds. He is still in PT 3 times/week. He has started to regain some feeling on the top of his foot. He can walk and even run with his brace but his activity level remains pretty low. PT starts to include exercises instead of just putting his bones back in alignment.

5/1/14-5/2/14 - Cole has terrible coughing fits. We are unsure if this is allergies or a cold or virus. We put him on a nebulizer with saline which we have for his brother’s asthma. He is out of school for these two days.

5/3/14-5/4/14 - He is feeling better. Sunday is a beautiful day. We play catch outside. He plays wall ball with his friends. Cole is trying to convince me he is well enough to play baseball in the town league. By Sunday night he is in agony and we are back to where we were in January and early February.

5/4/14 - We put him back on the ketamine and diazepam. We give him Ibuprofen PM but he still has trouble getting to sleep at night. He wakes up crying and winces in pain all day. His fibula is continually 80-100% out of place when he goes in for PT. Tape seems to help keep it in place to some degree.

5/12/14 - Appointment with Dr. Chopra. It’s a very different appointment than what we were expecting when we scheduled the appointment. Dr. Chopra prescribes a week of steroids which appear to have no effect.

5/19/14 - We attempt to have Cole return to school. He only makes it through half a day and it becomes very apparent that he is not going to have a quick recovery from this relapse.

5/21/14 - Brandon tells Mike Healy that we cannot keep going on like this and we are referred to Dr. Cummings.

5/27/14 - He has not had ketamine or diazepam for about a week. His pain is slightly improved and he hates taking it. We are keeping him as immobile as possible in an attempt to avoid sublexing of the fibula which increases his pain.

 


Take Me Out to the Ball Game

One thing I want to be sure to document about this year is our little league season. I've never been much for sports until I had two boys, but I have definitely become one of those crazy team moms. This year, baseball has been quite the family affair for us. For once, and most likely the only time since they are three years apart, both boys are playing on the same team. Blackstone is coaching and I score all the games. It's been a wonderful season and I'm sorry to see it come to a close. Trouble is our best first baseman and has hit several home runs. LT is our number one catcher and a pretty fair pitcher. He'll be a threat as he starts to bring the heat as he gets a little older.

Cole_pitchingBlackstone and the team have worked very hard. We entered the playoffs in third place and are heading to the championship in first. The game we played last night against the first place team was unbelievable. We were losing 6-0 heading into the third inning. It wasn't looking good. LT scored our only run that inning. He walked to first and on the next pitched ball, stole second, third and home. We tied it up in the fifth 9-9, but then let up three runs. We entered the sixth and last inning losing 11-9. We scored three and had to hold them 12-11 at the bottom of the inning. The bases loaded with two outs, they hit a ball deep into left field. The kid on third made it home, but the run didn't count due to the amazing throw from left field to third base for a force out to win the game!

It took me over 12 hours to stop feeling like I was wound tighter than a drum. This included vodka, herbal tea, trying to sleep, exercise and a facial among other things. I woke myself up screaming something in the wee morning hours. My husband is already used to stress causing unfitful sleeping for me, talking and laughing. Screaming is a level of crazy he only has to deal with occasionally, but apparently really close baseball games are capable of inducing it.

Connor_battingI am so proud of all the work the entire team, parents included, has put in over the season. It has not always been easy. Keeping 11, 8 to 12 year-olds under control is no picnic. We have had name calling and scuffles in the dug out. We've had bad games where were pummeled by the opposing team. Through all that, my husband has impressed me to no end.

Blackstone is a baseball coach that hands out patches after every game that the kids iron on their hats and wear proudly. He holds 2 hour practices twice a week and sometimes extra practices for the catchers and pitchers. He moves the kids around and allows them to play other positions. Every kid has been in the infield at least twice. He had me create a Google Group to organize his emails to the team. He texts and emails reminders of practices, games and forgotten equipment. I score the games using an app for him, and he studies the stats to best position his players. He arranges transportation for any kid that needs it. He quotes Abraham Lincoln in his emails. This week he had all the kids write down one nice thing about everyone on the team as a team building exercise before the championship game tomorrow.

None of that guarantees a win tomorrow afternoon. It would be a wonderful way to end the season and I know our team has what it takes, they certainly proved that at the game last night. However, these are just kids and some games they're on and some, well some are painful to watch.

But whatever happens, this season with all of us together on one team, it was absolutely amazing.

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P.S. The amazing photos of my boys are courtesy of another player's mom.


Work, School, Telecommuting and Sick Days

This cold and flu season has been quite horrific and is only half way through. Everyone in our family has been sick at least once. Both boys and my husband had the stomach flu in the fall. I luckily escaped that one. LT was just this side of being taken to the hospital for dehydration. He vomited at least a dozen times. And we've all had some sort of cold or sinus trouble. I started the year with a sinus infection. Both of the boys have been home with it over the past month and Blackstone has a post nasal drip that is seriously offending my beauty sleep.

Trouble is home sick again today. We started the morning with, "Mom, I can't breathe." Never a good start to a day. Trouble has asthma, but that's not the problem. His throat is so swollen he's having trouble breathing. After being well dosed with medication, he is now comfortable enough to be reading in the arm chair. This is coming on the heels of the note we received home from the truancy officer on Friday. Trouble has six unexcused absences this year. There are others that have already been excused. The only absences the school considers excused are a doctor's note, court date or death in the family. More than five unexcused absences warrants detention. More than ten and they send DCYF to your home.

Really, I think the policy is a bit overboard. I understand that school is important and that there is need to be concerned over a child's environment, but ten days in the course of a year is not that much. Especially, not when you throw in the fact that most of the country, RI included, is in the midst of a flu epidemic.

Trouble's unexcused absences are all sick days. If he has the flu or a cold and is home for a day or two, I often don't call the pediatrician. I know what he's going to tell me to do. I've been at this parenting thing for almost twelve years now. I don't freak out every time my child has a fever or tells me he can't breathe. I am not even all that phased by a temperature of 103 degrees, as long as I can get it drop in the course of an hour. And even then, I might reach for Belladona before I reach for Tylenol or Advil. Depends on how the child is feeling.

So I had to call the pediatrician this morning and not only ask for an excuse for today but also for the four most recent absences when he was sick. Sick enough to need to stay home, but not so sick that I had felt the need to call the pediatrician at the time. There's a part of me that is so frustrated by this. It just seems a waste of my time and my pediatrician's. But it's something I am going to have to get in the habit of doing each and every time Trouble is out, or even late to school due to illness. Late can be an issue for us too with Trouble's asthma. If I get him up in the morning and he needs to sit with the nebulizer for 20-30 minutes, we're not getting out of the house on time.

Five unexcused lates and absences can go by very quickly. It never really occurred to me that we were approaching that limit. At the beginning of the year, I thought we'd never hit that. But we did and it's not even halfway through the year.

Now when one of the boys is home sick, that means Blackstone or I need to be home too. LT hasn't had quite as many days out of school, and at the elementary level their hasn't been much concern over needing doctor's notes. LT really seems to shoot for weekends and school vacations for getting sick. He also doesn't have asthma to contribute to the sick time. Blackstone works out of the house, so he does stay home with the boys often. Some days, like today, he needed to be in the field, so I'm home. It's great that Blackstone can take so much of that on, but I know he doesn't do as good as a job tending to them when they're sick as I do. He's still going to spend the day working in the home office, just checking on them periodically. I have to call home to remind him to give them medicine, get them a drink and feed them. He will forget to do these things if I don't call. He also will not give them the correct medication or in the correct dosage. Recently he told me he had given LT Triaminic for his fever, which would be fine, he had a cold/flu, except there was no acetaminophen in the type of Triaminic we had. He hadn't actually given him anything for his fever and I had to explain the importance of reading the label on the medication. If it doesn't say it treats fever, if it doesn't have acetaminophen listed as an ingredient, then it's not for fever.

Almost twelve years we've had kids. He still doesn't know this. Of course, I've also known him to complain about falling asleep after taking Tylenol for a headache himself.

Hhhmmm. Which Tylenol did you take? The red one or the blue one? Yeah, the blue one is the PM to help you sleep, that would explain why you're so tired.

When I stay home when one of the boys are sick, I can telecommute into work, and I usually do. I do have four family sick days, which is more than most people have, but that's not enough to cover two kids. I could use vacation time too, but who wants to do that? And even when it's the beginning of the year and I have those four days, I still feel pressured to log on and work to meet deadlines.

I feel the pressure today, but I still can't make myself do it. I have been up getting ready (because I wasn't sure if I was staying home or not), caring for Connor, calling the school, calling the pediatrician (repeated busy signal), calling the pharmacy, emailing work, sterilizing door knobs, furniture, light switches and other frequently touched surfaces for four hours. I am tired. Maybe I'm coming down with something myself. More likely, I am just worn out. This mommy business is hard work.

It's time for a nap.

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