Months ago, before we had even left WV, my sister Sara text asking to stay with us in Buffalo and borrow our car, so she could go to her bestie’s destination wedding in Niagara Falls. Sure, why not. Isn’t that convenient? Your best friend is getting married twenty miles from our new home and I benefit from a visit too? Sign me up.
Then that whole selling the car thing happened and she sends me another text, “Do we need to rent a car?” Now come on. If the seven of us can get around, the two of you can too. She’s my sister, I can heckle her a wee bit. I did offer to rent the car for her, but also laid out some alternatives. I wouldn’t be able to pick her up at the airport because she was arriving during school pick up time, so she could take the bus, wait for me to get her, call a cab, or again, rent a car. Come arrival time, she and her husband Micheal surprised me, they took the bus. $10 and about an hour later, they had arrived at University Station and walked down the historic University Avenue to our house. The weather was perfect. 70s, with a brilliant tint of autumn foliage.
We started the sight seeing with a request from them to get wings. We obliged, walking with the trusty Radio Flyer back to the station, boarding the train (using the day passes they purchased to get to our house), and going to the Anchor Bar. The next day, while the children were in school, I took them sight seeing. We covered 18+ miles (map linked), down to the lake, and back again, taking in the tastes, smells, sounds and views Buffalo had to offer us. I wore them out. We started with breakfast at Sweetness 7, then headed to City Hall for a one of a kind view. We rolled out to the Erie Basin Marina, Canalside, and then looped around First Niagara Center and the construction to find ourselves out front of Coca-Cola Field. We worked our way through the city to Allentown, then walked the southern portion of Elmwood Village before stopping for lunch. We wrapped up our tour in the bike lane and on the sharrows of Elmwood Avenue, turning off at Bidwell Avenue to catch the path through Delaware park, our preferred route home.
The following day I promised less time in the saddle. We stayed in the Parkside and North Buffalo neighborhoods, covering about a quarter of the miles (map linked). We rode by the Darwin-Martin house, spent a couple hours at the zoo, then lunched on Hertle Avenue at The Global Market. We picked the boys up at school then headed home. That evening Sara and Michael walked the kids to the library and made a stop at the grocery. My sister thought she wouldn’t get any exercise on vacation, as it often is, and she later text me to say she lost a couple pounds. I didn’t starve her, but active transportation has many benefits.
When the wedding day arrived they decided to rent a car. I borrowed car share to take them to the airport for their car pick up, as the bus wasn’t timely, and then they had quick, convenient access for their 6AM flight the following morning.
All in all, we had a great time and I was able to take them places I had never been in Buffalo by bike. I really like to explore, and having company with me was empowering and fun. I hope they felt the same.
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.
This is Our 2012 Summer Excursion series recapping our experiences from June 3-August 3 by time and location. 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. Follow the TAG to get the full story. Maybe I will get through the whole trip before 2013 (it’s NYE, so maybe not)!
D33: July 4 should have been full of fireworks and bbqs and flags and maybe even parades, if you have some sort of traditional holiday flair you follow. While I am not into tradition, it was great to have been invited to a block party on our first day in a new town that had all of the above. As our history would have it, we lived in Buckhannon, WV (west of Elkins) for two years, and I worked in Elkins for part of that time. We met some great people and fell in love with this mountain community before moving to Huntington six and half years ago. One of those great people, Beth King, handles the community arts center, where I worked. She invited us to the block party! Hurray for Beth! As time would pass, many of those faces would cross our path again at the bookstore, bike shop, tennis camp, grocery, and on the street. A small town intimacy; warm and welcoming.
D34-49: The four children and I filled our days as best we could while Brent worked 12-14 hour days. We dined together as a family every night in the Davis & Elkins cafeteria and enjoyed breakfast at the Graceland Mansion every morning. Lunch was a toss up. Some days we had lunch together, and some not. Having the opportunity to be on campus with him for those weeks was invaluable to the children and for our relationship. I may not have been able to get any time away from the children, but knowing I might get 30minutes of shared parenting a few times a day gave my mommy voice a rest, and let me close my eyes just a bit to the hyper-vigilance we kept while living in a hotel. Last year we stayed in Huntington while he worked the Governor’s School for the Arts. It wasn’t impossible for me, I enjoy temporary challenges such as these, but it wasn’t ideal.
To make this entry less cumbersome, you can browse the photo gallery below, complete with captions, of our Elkins stay. It covers what we ate since we didn’t have a kitchen, how we kept our sanity living in one room, with two beds, the local bike culture, where we spent our money on extra-curriculars for the children, our geocaching finds, the views, the people, the fluff.
Spoiler: In terms of bicycling, Elkins was the best! We never drove in town, we didn’t need to, everything was very, very close to where we were staying. We walked most places and biked when we needed/wanted to save time/have more fun. I never saw another child on bikes outside of the bike parade and the park. I rarely saw other riders in general. Not sure why. Maybe they are more of a walking community? It was ideal for us. I was so spoiled, that thinking about going home to a 2.5mile ride to grocery was daunting.
I drove to Beverly twice, 10miles south of town for London’s Girl Scout camp, and utilized a carpool for her other trips to camp. Otherwise, the van just sat in the parking lot until the day we left. It even attracted ants. Ever have a vehicle with a pest problem?
D50-51: The day before the summer program ended we were presented with a room charge for some of the damages the children inflicted on the hotel. It’s an unsettling story involving play dough in the carpet and a five year old who wet the unprotected mattress, (I don’t want to get into details but feel welcome to ask me about it anytime. Great reason to invite us over, stop by, or meet up, eh?).
So on day 50, Saturday July 21, the program ended. We had the car packed up and we drove off to Buckhannon for dinner and a drive around our old stomping grounds. We booked a hotel in Charleston, WV, an hour from home, so we could swim and jump on the beds and decompress before tossing our house sitter out one more time before our full Summer Excursion would end.
Our plans to bike and camp the Greenbriar Trail system with friends never came together. Brent was concerned about work at Marshall and an exhibit he was invited to participate with at the Clay Center. We headed home before our beach trip. I was glad we weren’t out on the trail, post derecho, in the rain, as forecasted, but I wasn’t happy to be going home. My heart is with my family and friends (new and old), following a map around the country side, city scape, coast lines, and mountain towns. Such a gypsy.
That’s Elkins in a blog-post nutshell. Wasn’t it dreamy? Next up, our spat at home and our last week on the road, in Charlotte, NC and Myrtle Beach, SC.
Note: I tried to include as much photography as I could, but I left out a great deal! I don’t know where it went. Maybe on the phone? Anyway. It was fun, fabulous and we hope to have more of the same again. More small spaces, more outside adventures, more new people, more crazy.
We have had a lot of seemingly mysterious rear wheel issues with the ownership of our first Yuba (this two Yuba thing could get confusing, we are considering names). When the tire went flat Tuesday, with three boys aboard, I sighed deeply. Was this a related issue? It didn’t really matter. The important things were 1) what are we going to do about it? 2) why does Huntington have such a mosquito problem? It’s a related issue, as I was bitten dozens of times just standing there trying to figure out issue 1.
We were deciding to walk home (less than a mile) when the owner of the home we had locked the bike in front of, opened the door. We knew these people! Their children attended school with ours. How serendipitous! We parked the bike in their living room and carried on home. Brent returned with London, whom we dropped off at violin. He went back to the Yuba with proper tools and discovered a staple in the tire, that was most likely there before, causing both this flat and the previous slow leak.
Small town benefits, flat source found. The perfect October weather was just dessert.
It is noted, we didn’t carry anything to fix the flat. I gave that up when we are not going far (probably not a great practice), and I wasn’t going to fix it with three children crawling around and with the MOSQUITOES. I didn’t walk the bike home because I didn’t want to damage the rim or the tire further. What would you have done?
Walking miles! London and I needed to return to a relationship of balance this week, as were edgy with each other all of the time. I told her one evening that I was going for a jog and invited her along. She surprised me with accepting the offer. We jogged a block, walked a few, jogged a block, walked a few and so forth. I think we covered about three miles. My body hated me the next several days. My shins hurt, my biceps hurt. I have this idea that doing things that inflict pain can remind you that you are alive and that inorder to remain so, you must be uncomfortable at times.
It was one of the largest disspointments when I realized that health is not given to you with life, you must constantly tend to it. There are no pills or genetic remodifications. We are humans, and we require more attention and maintenance than any other aspect of our lives. Before this realization, I thought naively, that my body was impermeable to so many things, because I had always had a lifestyle that was active in a way it wasn’t dreaded work, nor was it noticeable.
Decades later and nearly a year into tracking my physical activities, I realize what a sloth I have become. I don’t even walk, one of the most simple human behaviors. Walking around a grocery store, once every couple of weeks was about all I have been doing.
During the winter months when I was babysitting, not getting anytime on the bike and sending Brent for errands, I was beginning to blend in with the kitchen. Not only were my muscles losing strength, but I was feeling the fat grow. I knew it was happening too, and now that I have pulled out the summer wardrobe, my clothes confirm it all. This isn’t a statement of being overweight, just one of being inactive. Even if I were overweight, it would still be a statement of health.
The scale doesn’t determine your fitness levels. I am coughing after a moderate ride because my lungs are clearing the cobwebs. My heart rate doesn’t recover quickly. My arms were hurting after a 3mile casual walk/jog?!
Worse than this, I don’t see myself ever taking up exercise for health. I have tried many many times in my life and I usually do it to drop the baby weight, then convince myself that when my clothes fit I can quit. Again, I am fooled into thinking that weight is equivalent to health.
When I began bicycling for transportation I felt I had found my golden fitness ticket, after the initial pain subsided. I could pick up my children from school, break a sweat, burn buckets of calories, build strength and endurance, without feeling like I was exercising. I convinced myself I was saving money, which is a huge motivator for me (maybe not a healthy one), and I was doing something purposeful with my time. Somehow the purpose of school pickup held more value than the purpose of avoiding heart disease, but it did and continues to do so.
So we walked.
We also rode our bikes. Not far, and not often, but it got the job done.
Since I was baby sitting Baby L. the last two days of school this week, the children claimed they wanted extra time with his mom, who happens to be or has been their teacher, so the took rides with her each day. Brent also happened to be going up to the school both days, so he biked.
Our longest stretch of not driving is about to come to an end. We haven’t been in the van since March, maybe? I know we haven’t put gas in it since then.
Thursday I plan to spend a full day running errands on my way to and from Charleston to meet up with a blog reader and friend of a friend. Sarah helped me organize our aborted trip to Morgantown this spring, and they are headed down, so we are choosing to head over. It was a great opportunity to tend to many things I can’t do in town and I am very much looking forward to meeting Sarah and her family.
After this jaunt, we leave for a very long road trip (via car and bike), which I will certainly fill you all in on, soon.