Go ahead and chuckle when you get to the part about it being be first day of summer break. I opened the WordPress App and this is what I found:
It’s been said time and again, I’m not a busy person, we don’t have a busy life. We started cycling some three years ago to declutter our schedules and slow down the pace. It doesn’t mean we don’t have busy moments or times where we are double, triple or even booked to be in five different places at the same time. There are fewer of those and more empty weekends and longer strolls through farmers markets and open ended volunteer hours at school or the neighborhood clean up. There’s also more time for children to bicker, play video games, and “be bored.” It’s not perfect, but it’s working out alright.
With all the downtime I kept wondering when to blog. The facebook page (linked to the twitter account shown on the blog sidebar) and instagramming was active and easy, but blogging required longer stretches of time, children to be engaged and housekeeping in a lull. It required a working computer, or app and a little motivation. Today, our first day of summer break, so many things lined up just so. The baby is now four and half and does all these great independent things. The two eldest can ride their bikes to the park and library, without me. Imagine what sort of world is opening up before us.
I see ahead of me a few hours alone in my own house.
There’s no promise of a blog resurrection. There is only this feeling that I miss writing. I miss my community of family cycling writers and readers. I miss reporting all the new places we rode, interesting Buffalonian discoveries, and what life has been like 500 miles from everything we knew as comfortable.
Life has been carrying on around here this past month and a half. Not quite back to normal, but carrying on none the less. This blog left off on March 3rd, the night before I drove from Huntington to Columbus to trade places with Brent at Children’s Hospital where our six year old was recovering from a second acute case of Guillain-Barré Syndrome. I didn’t return home until he was discharge a month later. The first blog post, describing Avery’s decline and initial hospitalization is here, and the second post indicating the second half of his ups and downs, then transition to rehabilitation is here, if you wanted to read things in chronological order.
This post reviews Avery’s rehabilitation, a very important step in GBS care and recovery. Rehab began while Avery was on the neurology unit. Physical (PT), occupational (OT), massage (MT), and recreational therapists (TR) visited his room every week day to begin the process of moving his limbs, engaging his muscles, and working with us as a team to accelerate his healing (emotional and physical). We had visits from social workers, psychologists and music therapists. Child life specialists were involved in teaching Avery to swallow pills, providing activities and recreation and documenting his hospital stay with photos. Every aspect of our needs were met by the hospital staff and volunteers. Nursing and patient care staff were our backbone. We utilized the family resource center, giftshop, various eateries, outside gardens and park, book carts, art carts, magic shows, bingo nights, shuttle services to the grocery, and so much more. We are forever grateful.
We moved units (off neuro and on to rehab) February 14th to find the actual rehabilitation of Avery was very slow and frustrating. He was still experiencing a tremendous amount of pain, especially when asked to move any part of his body. He was sensitive to touch. There was all the chaos of his autonomic systems dis-functioning. Then he was challenged to three 30 minute sessions of PT, three 30 minutes sessions of OT, two 30 minute sessions of recreation, a 30 minute massage, and a half hour of school with an on-site teacher, each week day, for six weeks. He had NIFs/VCs between every 2 hours to every 6 hours to eventually twice a day before being dismissed altogether. He had speech therapy for his swallowing for the first half of his rehab stay everyday. Once a week there was music therapy, twice a week there were group activities set up by child life on the unit, most evenings there was an organized craft/game/activity available to all patients in the hospital, and once a week Howard, a volunteer, stopped by our room to hang out and chat, do magic, and listen to Avery’s growing repertoire of jokes (thanks to those who sent in comedy material!). We opened care packages (thank you so much), built toys, played games, ate three square meals, decorated our room, made friends on the unit, watched the snow fall, FaceTimed with family, and speculated about the outcomes of “scientific studies.”
Three weeks in, we changed his medications a bit more. The doctors weaned him from neurontine and introduced Lyrica. We doubled his Elavile dose. All along we were still treating for high blood pressure, acid reflux and eventually congestion (cold/allergy related). It appeared the changes in medication improved his sleep and reduced his pain significantly. His progression in rehab made leaps and bounds.
Avery worked hard, even when he didn’t want to. When something was painful, he created his own motto of “it hurts, but it helps.” He self challenged. When asked to do 10 reps, he’d say, let’s do 20. If he made it 50ft in his gait trainer one day, he’d try for 150 the next. This isn’t to say he was all smiles about it. He did an extraordinarily good job of throwing fits, having tantrums and being violently belligerent. The entire rehab team worked with us to eliminate “yes/no” questioning, because he always said no. They helped us create reward systems that proved motivating, then eventually were not needed. They cheered him on for every little success. He was made to feel important and special, because he was. Every patient was. We all rooted for each other.
Avery observed the strengths and weaknesses of his unit-mates. He’d comment on their healing and progress and they on his. The other parents and patients would occasionally stop by with a treat or invitation to join them for dinner. There was a lot of camaraderie in rehab, a unit that seemed appropriately named Determination Way.
Sometime during our stay…the date tucked away in my journal, Avery had a second MRI, of his lower lumbar spine. The results showed he still had peripheral nerve damage, but the damage was improved since the first MRI. This helped identify the incontinence issue and let us know he was remylinating. We are still looking forward to a second EMG/nerve conduction study scheduled for May 21. All these tests help us to understand the variant of GBS, the extent of the damage/recovery, and determine/rule out a diagnosis of a chronic condition.
April 4, 2013, Avery graduated from rehab. There were cupcakes (he made them in OT), a large gathering of staff and patients, our family, reading of praises given by therapists, nurses and administration, gifts, jokes, and a lot of hugs.
I, personally, was concerned they were going to have to pry me from the hospital. I felt like I needed their help, their companionship, the lighter burden of everyday care. How were we going to transition to a home-life with four children, one recovering from GBS? Avery was going home with AFO braces, a reverse walker and a wheel chair. He could walk with the previously mentioned assistance, and do all his activities of daily living. He was ready to reduce his therapies to a less frequent outpatient basis. We were all going home a little more anxious, relieved by his rapid progress during the final three weeks of our stay, and happy we could finally sleep under the same roof.
There was so much happening, this post can’t possibly cover it all. We did some updates on our Facebook page (you should follow along, we have a lot of fun there) and there were some through the care calendar (139535, code 4009). We are working on a video of his stay in rehab…but you all know how extremely efficient and quickly we work around here, so please don’t lay any race day bets on this family.
We’d like to thank everyone again, as often as possible. So many people sent gift cards (for hospital purchases such as food, prescriptions, medial bills), care packages (you all are so generous and thoughtful), and meals (wow, I need to hire you to cook for us regularly) to either our home or the hospital. We had a lot of help with child care in West Virginia and with transportation of children. We had near strangers, take our daughter for a week and then some and shuttle her around to practice and school and the like. Friends came over to clean the house, care for the cats, and work on our malfunctioning oven. We had folks deliver frozen pancakes to make for easy breakfasts, and deliver groceries which they often pay for themselves. All of these things were not only valuable to us in term of time saved so we could be where we needed to be, but also in dollars. We were able to make the many trips back and forth to Columbus, pay the minimum suggested donation at the Ronald McDonald House for our weeks of stay (we even had a donation in our name made to the RMH), and repair our van when it started acting up, because you fed us, and supported us along the way. Students at Marshall hosted a benefit concert and raised some cash for our travels. A second group of students put together a gaming marathon and purchased Avery an Xbox Kinects system to aid in his therapies at home (more on that later).
So as we get our bearings together again, wading through outpatient therapies, bills, and followup visits, we are comforted and aided by everyone around us. Near and far. Thank you.
Late January 2010, our then three year old Avery began tripping over his own toes, then limping bi-laterally, then was unable to walk, then couldn’t lift his arms, and eventually too weak to raise his own head from his chest and shoulders. By the time we had a proper diagnosis, the syndrome had reached his respiratory system and he would be intubated (on a ventilator) for eight days, before strength and reflexes began to recover slowly. We spent two weeks in our local hospital’s pediatric ICU and ped-unit before transferring to Columbus for two weeks of rehabilitation. He left Nationwide Children’s with the ability walk and continued several months of outpatient rehab at home. We felt that we had a full recovery, minus a lingering nail biting habit. He also developed an intense personality (I’ve written before how aggressive he can be), but one we couldn’t determine if it was just his nature, the trauma aftermath of being a toddler and undergoing so much, or because of the intense amount of drugs he was subjected to, or was it a lingering GBS symptom?
That’s the nutshell. At the time we had a one month old Oliver. We had friends who jumped in and saved us everyday with food, packing lunches, bringing children home from school, therapeutic phone calls, breakfast deliveries at the hospital, grocery runs, child care, donations of extra breast milk, activities for the older children, out of town lodging, carpooling, visits, thoughts and prayers. We spent the next couple of years paying off the medical bills, holding our breath every late winter, marveling in what we endured as a family, with our community at our back, holding our hands.
There are a slew of details I am intentionally omitting at this time, but would be happy to discuss with anyone.
January 30, 2013 Avery, now six years old, said his legs were hurting that evening. Simple childhood complaint. January 31, he vomited twice that morning and we kept him home from school. By mid morning, we knew something was not right. I even called the school and asked his teacher to contact me so I could find out how he was behaving and moving the day before. She hadn’t noticed anything. Late that night Brent took him to the emergency room at the hospital over the hill, they walked there, down the retaining wall and into the department. They ran tests. Everything was clinically normal. Friday, they ran more tests, still nothing. Come Saturday, with the vomiting persistent, the pain waxing and waning, they discharged him from the pediatric floor with a diagnosis of transient synovitis(something we were told in 2010 as well). Instruction said to give him advil and follow up with our doctor on Monday.
Things did not improve over the remainder of the weekend. His pain intensified (I akin it to transitional labor pain). His vomiting continued. He lost the ability to walk, and diligently crawled to the toilet for all his needs. When he was able to sleep it was in 20 to 40 minute segments with 45 minutes of excruciating pain in between. Advil and Tylenol were ineffective. Nausea medication was minimally effective. We streamed movies and cartoons as often as he wanted to draw his attention away from his body.
Monday February 4th we were able to get into his pediatrician’s office. The doctor didn’t know what was going on. The symptoms and tests were not indicating GBS, but nor were they indicating anything else. More tests, this time looking for inflammation. Not once during all this did he has a fever or swelling, none. There were flu swabs, spinal taps, x-rays, CTscans, bloodwork. All showing a perfectly healthy six year old, who was obviously not healthy.
Mid Monday the pediatric neurologist came to see Avery. She tested his reflexes, determined it was another episode of GBS and put in the orders for another blood test looking for specific antibodies, to begin IVIG treatment, and to have us transferred to Nationwide Children’s Hospital, once again.
Every story has multiple versions and perspectives. While all of the above was going on, there was a flurry of activity at home to care for the other three children. My dad drove down in the middle of the night before. Friends were called to pick up children from school. I had never used my cell phone so much, and especially for making phone calls. Brent and I were running on anxiety, having taken turns at night, or splitting shifts with Avery. Avery looked like death. Dark eyes, rapid weight loss, scabby lips, howling in pain.
I kept very thorough notes. I wrote down the most insignificant complaint or observation, with the time and any extra thoughts. Brent added to it on his shift. It was copied and added to his records. We told our story to every medical student, nurse, resident, fellow, and attending, over and over again. Avery answered the same questions repeatedly, went through the same reflex and strength tests each time. He escaped through tv and slept in short episodes before pain surged through him.
A little after midnight on Tuesday February 5th, Brent and Avery arrived by ambulance at Children’s. I stayed behind to tie up loose ends, call my sister in from Cincinnati, rest insufficiently before heading to Columbus myself. Who could sleep at a time like this?
As it ended up, people I had only met once, or knew by association, or shared membership in activity groups would fill every need we had in order to be with Avery. My dad drove me to Columbus and dropped me off the moment my sister walked in the door to take over. She works nights from home, so many things still needed coverage while she slept during the day, but she was and continues to be able to handle evenings and be in the house while the children sleep.
Avery was greeted in Columbus by a huge team. Much story telling went on, another round of tests, leads were attached for monitors, pain and vomiting persisted. At this point it remained unclear if the GI issues were related or coincidental. It was also not certain we were dealing with GBS, given the tests up to this point were not indicating it was, and his symptoms were not as they were in 2010.
It is also at this point in the retelling that I am going to pause. I came home this weekend to spend time with our other three children, leaving Brent to care for Avery. They are waking up, so I am going to get back to them.
You are invited to follow us in more detail through our Care Calendar (Calendar ID : 139535, Security Code : 4009). My sister Shannon tries to compile texts, facebook updates, phone conversations, etc to make the journal updates. The actual calendar is how we are surviving. People every where are helping out in ways I have yet to acknowledge. Some share their experiences with hospital stays and how they made things “easier,” others have made simple “thinking of you” posts on our walls, or tweets, or emails. We have gotten cards, care packages and donations. Every one of them welcomed warmly and needed.
The above clip was one of the last times Avery walked. It’s not an exaggeration, I assure you. The clip below was how he got around as necessary after he was no longer able to hold his own weight. Many trips to the toilet. I never filmed when he was crying inconsolably or hallucinating, but after our 2010 episode where we had no documentation, I felt we needed something this time. Something to share with others who have had these experiences and are desperately searching for reasons their children are behaving so differently. I hope this doesn’t appear to be in bad judgement.
The clip above was after several viewings of KungFu Panda 2 (on the Children’s movie network). He had moments of shine coming through. The last clip below was an early physical and occupational therapy moment while on the neurological floor at Children’s. You can see he has some mobility in his upper body.
**Pulled open my draft folder and found some interesting writings. This one is from August 2011. Many of the thoughts still stand.**
We celebrated surpassing our van miles with our bikes yesterday. In approximately two months, we have ridden more miles on our bikes to more locations with more members of our family than we have driven. I like to disclaim my mileage on the vehicle with, 400 of those were to Columbus and back to take my grandma home, and to do a little bike shopping. Yet, that’s part of this “real life” experience. Sometimes you need to get out of town and sometimes the best (economical and convenient) way to do that is with a car you already own. Grandma could have gone home on the Greyhound, in the same manor she arrived, but I just didn’t want to send her off that way.
We have had other challenges here in Huntington, WV, when it comes to getting somewhere without a vehicle. I was unsuccessful in finding a way to the local airport, the art museum, Lavalette and Kenova, WV. There was a trip to Charleston that Brent needed to make. We have used carpooling, when the driver is going our way anyhow and sometimes we have driven, because after all, we have a car to drive. Yet, it remains my preference to find ways to get to and fro without the Honda Odyssey. I enjoy the process of solving the problem and I relish the accomplishment once I have seen that it can be done. The savings is motivating and my legs are also looking stronger.
Miles Walked: 0
Since August 14, 2011
Plans for Huntington’s Cycling Future
This week I made a call to the folks at the PATH about their intentions with a specific portion of their map that effects our route to school. I was disappointed to learn that the portion of Norway we prefer to use for convenience, but loath because of safety issues, will only be receiving Share the Road signs and there are no plans for improving the quality of the roads, sidewalks or installing bikes lanes.I offered them my assistance in anyway I could, including any help I might be with writing for the West Virginia Safe Routes to School Grant.
I expressed my interest in improving the routes to schools for many locations in Cabell county, as I believe “what’s good for the goose”…and “it sometimes takes a village”, as well as “be the change you want to see”. We have many friends here who have said they are unable to get their children to school (Geneva Kent, Hite Saunders, Spring Hill, Beverly Hills Middle) by any other means than to drive or have them bussed by the school board because of the very traffic they have to participate in to portage their family or the lack of alternate protected sidewalks and bike lanes.
A Simple Six as Leadership
I am learning a great deal about the power of the bicycle as I embed myself deeper into this lifestyle. I am still learning. Many others have blazed the way of advocacy before me. Up to this point I have avoided a lot of outspoken behavior that bares a strong message in favor of cycling here in Huntington. At least I feel that I have done a decent job of only relaying our experiences without a lot of complaint and finger wagging. I recognize that cars are not the enemy. I have tried to keep my questions and concerns about bike safety to forums that have members who might share my sentiments or have a solution to offer (PATH, Create Huntington, Critical Mass Huntington). Many of the blog posts I have made were in an effort to describe how we have biked as a family in our town and as a way to illustrate the positive in Huntington, despite it’s reputation in the national news.
All the while I have wanted things to improve and I have wanted someone to share it all with. Our transition to going car-lite has been gradual and I don’t expect or ask anyone to give up their cars. I may ask my friends why they haven’t considered biking, but I won’t tell them they should run out and buy a bike and join me, although I would love it. I will tell you all about our experiences and explain to you how we are doing it and why it’s such fun. I will even tell you all the negative experiences and difficulties we have had with our bikes. I enjoy talking about it, but I do wish there were other families here embracing it. I look forward to seeing the PATH completed and the community more receptive and accommodating. I am excited to see the changes as they occur here in our little Appalachian city. I am happy to be a part of them, no matter how insignificant.
Then there is the self doubt and the fear. While I know I am very passionate and obsessive about what our family is doing now, if you knew me before, I wasn’t passionate about much of anything. I certainly had interests and I discussed my process of understanding the food culture, cloth diapering, aftermarket economies, preschool art, raising children, and my belief system with my friends, but I could have shrugged any of them off at anytime. I wavered in my convictions of what I loved. I didn’t know who I am and I was adopting the interests of the media and my peers. This isn’t to say I was jumping on board every passing ship, but I valued what others were doing and when I found a particularly frugal method that was also “socially acceptable” I would consider it and then possible join the crew. As I grow I am also peeling off some layers of my image. As I root myself in my existence I am strengthening my resolve. I am standing for something.
There have been some difficult conversations in my home lately. Most them involve my sensibilities and my husband’s convictions. We are constantly standing worlds apart on many things that he holds true (topics like FDR’s second bill of rights) and I toss about like salt. Yet, just because I don’t take to heart his values and beliefs doesn’t mean we don’t have a middle ground and attempt to find the others point of view. I see where he is coming from, but it’s not something I accept for me, at this time, and it’s OK. Most of the time it’s better than OK, it’s wonderful. I used to worry that we would grow apart as he builds his career and I wondered pointlessly (I know there is a purpose) through child rearing longing to finish my masters degree and to build my own interests that seemingly get push aside for colds, spelling tests and chess club. Our differences are opportunities for learning and growing together. I use this as an illustration of how my point of view may vary from many in my circles and yet we still have good relationships.
It is my hope that my passion for seeing Huntington, WV as a strong bicycling community, one that builds a foundation on small local businesses and community relationships is shared by my peers and the citizenship of our town.
Welcome everyone! Our 2012 Summer Excursion series recaps our experiences from June 3-?? by time and location, and should follow up with more detailed topics about finances, family and finesse. Please let me know if you would like more details about anything and I will do my best to work them in or reply personally.
D10: Tuesday June 12, we had an unexpected change in plans. The first of many. Things aligned in such a way that Brent, Elliot, Oliver and I took the van and two bikes toward Columbus. London and Avery stayed with Karen to play with their friends.
Our first stop was Springfield, OH where we met up with my uncle James and grandma B for a light lunch. We were glad not to overwhelm grandma at her apartment and have the chance at seeing James, whom Brent thinks of as a great mentor. Then we drove to Columbus, unloaded the bikes and followed a bike-tinerary arranged by David Hohmann, whom we came to meet and interview for the RPM project.
This was our first time on bikes in an unfamiliar city, with our children. The bikeway ride was nearly all on trails (being it is the longest connect bike trail system in the country), leaving for very short moments to get groceries, check into a hotel or ride to my parents. Columbus is not a small town. Brent was extremely intimidated by the unfamiliar traffic, mood of drivers, signage, traffic patterns, and so on. We even lived in Columbus for a while, but not as parents and not as cyclists.
I was ecstatic to be surrounded by people on bikes, bike signs, tall buildings, folks who didn’t speak English as a first language, folks with a great deal of character or ethnicity and didn’t pay too much attention to the small fact that I didn’t know where we were going, or how to get there. I have a lot of naive trust in other people and I never felt threatened by the drivers or the situation (except one very busy, wide intersection where I was more concerned about the light turning red too quickly, and which we handled well). By the time David caught up with us, we were laughing about how often we drove these streets ten years ago and never considered the bicycle. It was so simple to get around and many people were doing it this way (albeit, we never saw any other children on bicycles, beside David’s and our own).
I can’t find the map of the bike tour, but I would like to put the idea out there, that you plan a visitor’s route in your own town. One that takes people through a variety of different sections of town, showing off the arts, culture, bicycle systems, architecture, and other local features. If you can be there to give someone the tour, even better, as reading maps and riding was slower and didn’t allow for as much sight seeing, as just following David around. We really enjoyed riding with him and his son on the deck of their Xtracycle. He rides considerably faster and more nimbly than we are accustom (maybe similar to city driving), but I think we were getting into his groove about the time we reached our van again. There is never enough time!
After a great dinner and Jeni’s ice cream care of the Hohmann’s, we headed back to Tipp City. We are so grateful for the hospitality of strangers, and for every moment that has been gifted to us, we have been able to pay it forward, which feels equally as important and rewarding. The gift of kindness is ever lasting.
The above video is long and unedited, but will give you a great sense of the fun to be had with children when riding with friends through the city. At least we think so.
D11 & D12: Tuesday we spent a great deal of the morning repacking the van to continue our journey. At our departure from Tipp City we had driven 530 miles (including the miles my sister drove to return the van to us) and biked 137 so far on our trip!
We left Tipp City in sunshine and sadness, as we had enjoyed our stay so very much and hadn’t had nearly enough time with our family and there were so many other friends we didn’t have time to contact. Being that it was ‘home,’ we knew we would be back soon.
We left all our old and new friends in Yellow Springs and set a course for Rochester, NY, our next un-intended destination. Brent was invited to give a short lecture in Rochester, and we have really good friends in the area, so we changed our course from going to Connecticut to staying a bit in New York.
We stopped for the night at a friend’s home in Cleveland. The Slankard family took us in with extremely short notice and showed us a great time at the art museum (free to everyone) and botanical gardens (where we were guests on the Slankard pass) the next morning. There wasn’t time to take it in by bike, but like all the towns we have gleaned through and friends we have connected with, we hope to be back for a longer visit.
D12: Later that afternoon we crossed the Ohio state line, the Pennsylvania one a couple of times and entered New York. We had arranged to meet up with Urban Simplicity blogger Joe George at the Holiday Inn Express in Buffalo that evening (where we were staying and billing as travel expenses to the host institute in Rochester). He provided an interview for the RPM documentary, gave us a lot of advice on how to spend our time in the area and offered insight into using a Yuba Mundo when you don’t have children to haul around. I couldn’t even imagine!
The couple of other times I had been by Buffalo on my way to Niagara Falls before this one, left me with the sense that Buffalo was a run down, old factory town. I never gave it an opportunity to show me anything else. Reaching out to other cargo cyclists has afforded us a priceless opportunity to see cities from a local perspective. We are not traveling through as tourist, taking the prescription formula from the visitors bureau. Our family has been able to talk to the people who live in these towns, and hear their history and get their recommendations for what Joe would do for a coffee break on his way into work.
Buffalo was teaming with bikes, and bike parking. I felt overwhelmingly at home in the neighborhoods we walked. Yes, it was summer, in a very level city, and I only pranced about a few blocks, but they were great, and I love winter…but not extreme flatness (give me a mountain view any hour of the day). We didn’t see any families or children on bikes, but we were not in a predominately residential area either. Who knows. My point being, I was pleasantly surprised by what I experienced away from the interstate in Buffalo, and if you had your doubts, as I had mine, you might find yourself rewarded with great interests.
D13: Friday, June 15th, per Joe’s suggestion, we walked around the Allentown neighborhood of Buffalo, stopped at Rick’s bike shop where we discovered the best fit for Elliot’s next bike (26in wheels, 14in frame) then finally drove to our friends, Seth and Ellen’s, home in Rochester with 1016 van miles behind us!
D14-D16: Somehow, Ellen, Seth, Brent, and I were so busy with the eight children between us (and two extra she baby sits), I didn’t keep any notes in my journal from June 16, 17th (father’s day), or 18th. We were their guests at the YMCA pool, spent some time successfully shoe shopping for Brent, London and Avery, stopped into the natural parenting store, enjoyed time at the creek side most every day, and treated our friends to Thai and ice cream our last night in their home. Seth took some of them to the farmers market one morning, made breakfast for us all often, and dinner too!, and to pick strawberries on Sunday, to which the children made smoothies and sold in the neighborhood.
We left New York on June 19, for a new sort of adventure…