Yesterday we were treated to breakfast and a community bike ride that raised more than $2200 for Avery’s expenses. It was intense. We were greeted by so many well wishes and by the time I finished saying thank you and catching up with a few tables, I missed several others who finished mopping their syrupy plates and were on their way off for the weekend. We caught back up to some during the ride, where children corralled around Erick, our neighborhood ice cream tricyclists. The energy was incredibly positive. Laughter, that perfect weather we have been able to enjoy this late into spring, a community of strong leaders, proud riders, and friends.

There were several people behind the scenes making yesterday’s benefit events possible. Thank you Cara and Thomas, Stacy and Matt, Byron and Lynn, Linda and her kitchen posse, John, Jaye, Tom and Bill, Joel, and anyone else I didn’t know about, but deserve a lot of extra credit. Thank you. Thank you. Thank you.

To those who joined in the festivities, it was the best party I have every attended. Neighbors and friends. Colleagues and crew. School family and acquaintances. All  dining or riding around town together. He-yah!

Speaking of parties, my 33 and 3/3rds birthday is approaching. We simply must celebrate. Hugs and high-fives for everyone!

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If you would like to participate tomorrow, June 8th, more information can be found below:

• Two fundraisers set for June 8th to benefit Huntington family
• Organizers getting ready for Saturday bicycle ride fundraiser (with paypal information)
• Ride sponsorship form

Saturday’s events follow two other fundraisers held while Avery was at Children’s Hospital. The first, a benefit concert at Marshall University was organized by Ella Clark and helped us with over $200 in transportation and lodging expenses. The second was a gaming marathon sponsored by the Marshall University gaming club that successfully raised enough money to present Avery with an Xbox Kinects system and several games to use as part of his home phsical and occupational therapy.

All of these compliment the many personal care packages, gift cards, meals, and child care provision provided by countless people while we were in the hospital. I think I have sent out 50 thank you cards to date, with so many more to go.

The feelings behind these gestures and sentiments fluctuate between embarrassment and heart pounding love. With so much need and travesty in the world all these people have chosen to spend their time and energy on us, on Avery, on our community. It’s inspiring and motivating and overwhelming. It’s also difficult to be on the receiving end of such gifts. Perhaps it’s just me, but I flush with embarrassment for being in this situation, some how feeling that perhaps a series of different choices would have avoided such hardships, hardships that in the “big picture” are nominal. Please know, as I have tried to convey with a lot of sincerity, that you may never know how much all of this touches us deeply and we are grateful. We hope we can continue to give back to you all with our work and our efforts within the community and amongst the world.

Avery is getting stronger every week. He continues 2.5hours of therapy twice a week at Milestones Physical Therapy in Hurricane, WV (30miles from our home). He gets to Challenger Baseball at the LL3 fields as often as we can take him. He does his home therapy as we can get it worked in, and he is enjoying a mostly typical summer break from school. Having missed almost half of Kindergarten didn’t set him back, thanks to having an onsite teacher at Children’s who worked with our school, his tutors, and his own resolve to stay on top of his work. Avery is walking with the help of his AFOs, and has some time out of them as well. He has some foot-drop issues, but we feel those things are slowly resolving as well. The EMG showed continued signal delay in his nerves at the end of May but ruled out his condition as being chronic. He is continuing to take 50mg of Lyrica twice a day for nerve pain.

We tell our children that we won’t give them a hand unless they are showing effort to help themselves. It’s not a hard and fast philosophy, but it works for many scenarios. I wanted to let you know some of the things we are doing to help ourselves through this year financially. Our emotional and physical efforts are another story.

To start, Brent took on a summer job with a company as a contract employee. His chair also helped him secure his summer class at Marshall, which pays above his regular teaching position. We also applied for financial aid at the hospital and other medical facilities that offered it. We are still waiting to hear back. We set up payment plans where we could and double check every EOB with every bill and call back to our insurance if we are in doubt about the coverage provided (or not provided). It’s messy, but overall our health care insurance has picked up a substantial portion of our costs. The Lyrica is only $150 month, they approved most of our Ohio doctors and stays as in-network, and they covered our wheel chair rental as well as other equipment costs so far. The tricky part is going to be when the fiscal year ends June 30th and we have to start over with our deductibles while continuing to go for follow ups and therapies. Yet, we did this in 2010, with a newborn, and we will do it again in 2013, with all of you at our side. Thank you.

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Spring!

We arrived home from the hospital with Avery on April 5 (his situation is the former three posts on this blog) and I do believe I rode my bike everyday for nearly two weeks straight. There was so much to be done. Some days I put in 20miles of back and forth errands and school drop offs. Then once that was caught up, we had to focus on sports practices for the children and out patient therapies for Avery. The therapies and the location of practice, combined with the disorganization that has ensued with getting out of the house in the morning has us averaging 350miles on our van. We are a slave to the schedule of the children. We have even taken to driving a child to practice, dropping them there, going home to get dinner and take other children to practice and then driving back after tucking in a few children at bedtime to pick up the first child. It’s not transportation savvy, but it is temporary.

We signed the children up for sports this season because we felt they needed a little extra something to keep their minds and bodies occupied while a third to half of us were in Columbus. I won’t do it again. It has proven exceptionally difficult to juggle two kids in sports, one in therapy (who is now in a sport…as a part of therapy), three in school, and six who need to eat. You wouldn’t think that would be a challenge, but coming from a really light schedule of activities, it has been a shock to the structured system. Or maybe it is not that at all. Maybe we are all still healing.

Several people have commented that it seems things are going well since our return based on what they have seen on social media, and according to the information I have provided here/there, it is going well, but the truth is I can’t bare to repeat the chaos and frustrations after I experience them. I want to focus on the fun, the happy, the reasons to get out of bed, after having two months that have aged us all. Two months that added grey hair and wrinkles and extra weight. It’s been a stress filled year. It’s going to be a while before we find our balance again.

In the mean time, we get up and have breakfast. We ride our bikes if we can and we drive if the effort to leave 20minutes earlier isn’t working out. Brent just finished two academic years of only cycling to work, rain, snow or shine. I still bike my errands around town with Oliver and drive when we have to go to areas that are not “bike able” or are out of town (Avery’s therapy is a 45min drive one way, twice a week). The children do their thing all day, and I do mine. My volunteer efforts are not up to par, but everyone is understanding. My garden however, is getting greener ever so humbly.

{How is Avery? He’s doing well. Getting stronger ever so slowly. We had a day recently full of falls, feet numbness, and dizziness when he lays down. We don’t know what this means but we are staying the course. We are back in Columbus Tuesday for another EMG, where we hope to have more “answers” to his situation.}

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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.

Avery’s best smile at the height of his facial paralysis. His best friend Parker came over for a visit several times.

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.

PT in the gym during a time where he was still uncoordinated, weak and pain filled. At this point it was also difficult to get him into clothing. We were carrying him delicately anywhere he needed to go and helping with all his meals.

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.”

Being fit for AFOs, aka “doing science!”

Tape, foam and rubber tools were added to utensils, pencils and tooth brushes to aid his grip.

Music therapy. Fun right? Don’t get GBS just so you can do awesome things like this too. Volunteer with your local organizations, it’s much more rewarding.

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.

Writing a letter to his siblings about the snow fall we received.

Avery spent Valentines, St Patrick’s Day and Easter in the hospital. Thanks to some special care packages, he had jokes, decorations and activities for them all. We don’t make a big deal of holidays at home, but in the hospital, every thing was a call for celebration.

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.

Yoga.

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.

Playing I-spy in the magic forest with a unit mate.

PT and TR planned a field trip to COSI to trial his abilities in an environment outside the hospital. We had a fab-lab-tastic great time.

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.

TR took advantage of the six inches of snow for snow ball fights, snow angles and some snow writing.

Rehab Rocks! It really, really does.

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.

Cupcake making during OT.

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.

Obligatory “animal” photo at the hospital. These creatures were all over the place. This was taken before we left Children’s for the last time.

Home, putting on his own socks and AFOs.

Back to school. We were able to find three different ways to transport his walker, continuing our bike commute fun.

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.

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January 30, 2013

Left you all a couple weeks ago with some of the most grueling parts of our family situation. I am currently back home in Huntington for a couple days, catching up on chores, taking care of myself (MOPS, The Wild Ramp, River and Rail, Studio 8, bike ride, friends, food, sleep) and my other three children. Brent is with Avery in Columbus. You can read the first part of our crisis here, and continue on with the saga below.

Avery, our six year old, was admitted to Nationwide Children’s Hospital February 5 near midnight. He was met by a team of doctors, nurses and therapists and sent to the neurology unit. Without having my journal in front of me at this time, I estimate he spent another five days with intense pain, extremely high blood pressure and other very misaligned autonomic systems. The pain team was able to do their best, but cautious to using heavy narcotics which could cause respiratory suppression.

In order to confirm/deny the diagnosis of GBS, the doctors ordered an MRI of Avery’s spine. A couple days later, there was a nerve conduction study/EMG. Both tests confirmed inflammation of the nerves and disruptions in the nerve communication. The EMG also helped identify this as a second isolated case of GBS, not a flair up from the first case. This case presented very differently from his 2010 episode. In 2010 his motor neurons were heavily effected, in 2013 it was his sensory nerves, which led to the frightening pain.

EMG

Taking his own vitals.

Controlling pain and sensations through cold compresses and massage.

Given all this data, the progression of the illness and the introduction of Bell’s Palsy on the left side of his face…and a slew of other symptoms, we accepted the GBS diagnosis and added to it the Miller-Fisher Variant. Following the week and half period of pain, which included two additional treatments of IVIG (first was at our home hospital), he was assessed for rehabilitation. He was slowly taken off many IV drugs, transitioning to oral, and monitored for stability with respiratory function. When we had gotten clearance from our insurance company (a story in itself), we were moved from neurology to the inpatient rehab unit at Children’s on February 14.

Nationwide Children’s. Avery room is the left side, third from the upper floor.

A couple days prior to the rehab move, Brent went home to Huntington with my sister and two of our other three children who came up to Columbus for several days. The hospital has a very strict, protective visitation policy during influenza season. The 2012-2013 winter was especially difficult for the flu, so children under 14 are not permitted on patient floors, and we can only have four visitors to his unit the entire duration of his stay. Those spots were taken by a couple in laws, my sister and a dear family friend (at Avery’s request), leaving my own parents, and other family unable to visit. This of course made it exceptionally difficult to have our children with us in Columbus, unlike the 2010 GBS case, where we felt we could be together more often during Avery’s hospitalization, despite having a new born.

We understand the restrictions, and if it wasn’t for the grace of Avery not being under any type of contact restriction, it would have been even more challenging. On the Sunday before they left town, Avery had been fitted for a wheel chair and granted 30 minutes to visit with everyone on the lobby level. This was his first transition out of bed, into an upright position. He was unable to do any of the moving himself, but once upright, with proper harnesses and belts, was able to remain so for short periods of time. His duration of chair time has gotten long with time.

Such a bitter sweet moment in our journey. Avery was finally able to be with us all, and they all had to leave. Thirty brief, precious minutes.

Insisting on waiting on the washer to finish in the family resource (Blue Jackets) room.

With Brent, my sister Shannon, and the three children in Huntington, and Avery and I transitioning to rehab in Columbus, there was a lot of texting, phone calls, email researching, and a little FaceTime. It was during all this time that people were filling countless needs on our CareCalendar (Id: 139535 Code: 4009). We simply could not function without the work of dozens of friends and community members. I am continuously surprised and impressed (when I really shouldn’t have been, b/c everyone is always so selfless and amazing).

Brent and I switched places the weekend of February 16th. It’s a 150 mile drive each way, without any interstates until you reach each city. The parking has been covered by the social worker, due to our long term stay, and free when we utilize the Ronald McDonald House across the street. We have three family/friends in the Columbus area who have come to our rescue with groceries, special clothing and activity/book requests for Avery, and some child care. This has made being with Avery, and caring for him around the clock, a manageable task. Our other needs, outside of the need for being together as a family, and desiring Avery to be healed, have all been met with love and efficiency. Thank you.

When I returned to the hospital February 18th at 8am, Brent immediately left for work. He managed to fit in a week of classes, then the family returned to Columbus together, utilizing the RMH once again. Brent, Shannon and the children returned home on Sunday night, February 24, then this weekend Brent and I made a swap once again. I leave for Columbus in a couple hours, Brent comes back to Huntington Monday morning. And back and forth we go.

“Boots” for flexing his feet to 90degrees. Worn while sleeping.

During Avery’s stay in rehab he has developed new symptoms. He had something called a convergence insufficiency with his eyes. He became incontinent. The sensations in his limbs went from pain to feelings of intense tearful itching or sharp grains of sand between his toes. There was the feeling of things in his eyes, the sudden onset of cold sores. He lost the ability to move his ankles and toes completely. Many of these things would disappear, and some of them would reappear. Some remain gone. His vitals slowly became normal. With medication they have been able to bring his blood pressure down (to slightly above normal). He is taking three doses of neurontin everyday and a dose of elavil before bed.

The view that Avery narrated to me.

The facial paralysis spread to both sides and has recently subsided. This affected his respiratory tests and his ability to swallow. The first barium swallow test showed aspiration on thin liquids so he was placed on a nectar thickened diet. A second test on Friday showed aspiration on nectar thicks and he was elevated to honey thickeners. This morning he was given a chest x-ray for wheezing that may have been caused by aspiration, but it was clear.

We are often, as you can imagine, asked how is Avery doing. Everyday has been so different from the one before it that it was difficult to say if he was better, worse or the same. We just told people he was different. We were also cautious to say he was better when in a couple hours he might not be. Since I have been home this weekend, Brent reports he is getting better. He is making progress in his therapies, as you will see in the following videos. His ability to write and control his hand was improving, his endurance is increasing, his attitude is brightening, he is sleeping for longer periods at night. Some of his symptoms are worse, like the swallowing, the return of incontinence, and no changes in strength. I don’t wish to downplay his progress or over represent it either. The information sharing is a delicate thing.

Tilt table to help with weigh baring.

Family time in the Blue Jackets room.

Using the knee stabilizers.

Check out these clips from this most current weekend. He was fitted for special ankle to calf braces on Friday, so he could stop using the knee stabilizers he was utilizing for the previous week. The clips show the very first “steps” and other firsts I wasn’t able to be present for. These are tremendous improvements and I do wish I had video of all he couldn’t do prior to this for comparison.

A frozen yogurt treat before I left this most recent time, in the “magic forest,” lobby level.

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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.

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As I understand the PATH currently, there are many agencies involved with the development, funding, construction, and maintenance of this multi-use network. One group works on planning, one on securing monies, one on retrieving bids, one on ground breaking, another for clearing and repairing. These groups work in conjunction with each other and for the common purpose of providing a friendly and functional recreation and commuting bicycle and pedestrian trail system. Several different agencies have hosted public surveys, meetings and forums to develop PATH to best meet the needs of the user.

Friends of PATH wants to take this idea further. We want to create a group of volunteers who consistently help shape the development and maintence of PATH. We want this to be a group designed by the user, for the user. It could become an advisory committee, or a volunteer maintence group, or a fundraising platform. This is a clean slate, the opening remarks remain to be made.

Join me, Breanna Shell (city planner), Bethany William (RTI representative), Stacy G. (the Tour de PATH chair), and Jody Perry (friend of PATH) tomorrow, Saturday January 19th, 2:00pm at Heritage Station, inside at the CVB. There will be a PATH update, maps, upcoming event information, and a lot of discussion to set the foundation for the Friends of PATH (FoP). We can all commiserate on our desires to be a great friend to PATH.

More information available in this press release.

While you are visiting Heritage Station, enjoy the Cash Mob at Brand Yourself and Art Walk.

Reminder: Critical Mass January Edition is tonight, 6:30pm from Ritter Park fountain. Bundle up, bring lights. Have fun.

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On Day 51 we arrived home from Elkins, WV after a near three week stay. It was a difficult choice for me, as home is one of the last places I want to go, when given the options, but it was a necessary stop for Brent. He had been trying to work on the road all summer, and doing a fairly disastrous job of it. No fault of his own, it’s all mine. I owned all his time.

D52-55: We spent a great deal of time at home being lazy. There was friend time and cooking of real food, hot meals. There was a lot of loafing about, watching the telly. The last full day at home I drove the children out to Target to pick up school supplies and uniform parts. We hunted for items on my long list of things to fix around the house, since we had some extra summer job money. And it was very hot out (as noted in my journal).

Summer and I are not friends. More like colleagues. The sun may put me in a chipper mood after days of cloudy weather, and I do enjoy a longer ‘day,’ but I don’t care for its glare, UV radiation, and heat. Summer, in our backyard, also means mosquitoes. With all the outdoor time we had packed away this summer, I didn’t have a single bite to report until we got home. It was a blood feast in our own yard. Everywhere in the neighborhood actually. It made tending the overgrown garden unbearable. It had me keeping the children indoors. If I recall correctly, it was also a nasty year for West Nile nationwide.

I welcomed the indoor refuge, the air conditioning, and yes, even the cabin of my van on some of these days. I noted in my journal that on that Thursday, July 26, after doing my Barboursville errands, I drove to the Wild Ramp. It’s a bikeable distance, but I was already in my cozy haven away from all that nasty sunshine warmth, and I kept right on to Heritage Station.

We had tried to keep our home AC off for 2012. The late spring time was ok, and early summer not too bad. We ran into an issue when condensation started building up in our basement. A wet basement leads to mold. We tried a dehumidifier and salt trays, but because it’s a walkout basement, we weren’t having much success. Flipping on the AC for a few hours, dried it up quickly. We tried to keep the thermostat higher than usual, to make the transition from indoor to outdoor less dramatic, but steadily it crept down. We attempted a number of other techniques too. Maybe we can find a better solution to energy conservation in 2013.

D56: Friday, July 27, we packed up the van again, for the third time this summer. We tidied up the house for the sitter, and drove back to Heritage Station before departing town one last time. I grabbed some locally roasted coffee beans and quinoa granola to share with our next hosts, very old friends of mine.

The drive to North Carolina was very stormy. We decided at one point to exit the highway and do some grocery shopping until some of it blew over.

We arrived at Janna and Matt’s in Charlotte, just in time for dinner and a movie.

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D57: We had a movie mantra working in Charlotte. A marathon of old flicks for the children up to an early dinner time with Janna’s whole family. I have known them all since ’98 and it’s a reunion with every visit. Parents, nephew, sister, and inlaws. This time we had an extra treat of some new friends. It was great to meet Kirstin and Dennis and their fellows. Musicians. Alaskan native. They had a couple of fun travel and children war stories to share. On our way back to Janna’s we threw in a stop at EarthFare and loaded up on some bulk bin goodies. Granola, quinoa and lentils, that would set us up for meals a plenty while on the beach the remainder of the week.

Tiny space sleeping. We are not picky. Three on the fold out futon. One on the fold out chair, one in sleeping bag on the floor and one upstairs on the air mattress. Perfect.

Breakfast on every available horizontal surface in the apartment. Mmmm.

Afternoon and evening pool side at Janna’s sister’s complex. We grilled. We ate. We shared stories. More simple pleasures.

Post swim “we don’t want to leave.”

An Earth Fare sunset.

D58: There’s a simple pleasure in the company of friends. Sharing in meals, stories, laughter, the togetherness. We soaked up quite a bit of Matt’s cooking. Hot breakfasts everyday. The children were willingly subdued in their tiny space with more movies and two dogs to love on.

We packed up mid Sunday, and left for South Carolina, where we were meeting up with friends from Florida at a beach house in Murrells Inlet, south of Myrtle Beach. I should probably mention here, we didn’t bring our bicycles for this last portion of the trip. We made a choice to leave the bikes home for this one week. Neither of our friends in NC or SC would be riding with us, and when looking over maps of the areas we would be in, biking didn’t look like a reasonable option.

We pulled into the carport of the beach house (under the house) moments before our friends Nick and Angela, who spent their entire day on the road with two small children. Throwing frozen pizzas in the oven for dinner, we gave huge hugs to our old Huntington friends, divided up bedrooms and called it a day.

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Well, today, after wrestling with the alarm clock post holiday break, I fell blissfully back to sleep on the couch. The children were tardy, as I predicted, but not for a lack of genuine effort. The clothes were laid out, the lunches packed, the waffle batter was made. There are only so many bodies I can put clothes on and force feed and scrub teeth. At some point, they have to get themselves out the door. After all this, Brent drove them to school, as planned, being as it was so cold, we were running so late, and just because like most mornings lately, our bike mojo is low. It’s ok. I am ok with it. You can be too.

Then with the sun shining in, I said to myself, “self, let’s go ride our bike.” So we did. Oliver and I bundled in layers for the mid 20s/low 30s day. We grabbed things to drop off at The Wild Ramp, Bottle & Wedge, Kidz Biz Consignment, and Rachel’s house. I had just fed the boy some ice cream, because, why not? Then I promised him a stop at Tropical Moon while we were out. Because, why not? We were going on a bike ride! Then, that’s just what we did. All that. The drop offs, the fro-yo, the riding.

It was wonderful. The sun was all sunny. The day was all bright.

Yes, there was the overlooking of extra socks and shoes for the toddler who is learning about bladder control. Especially when he’s sleeping. Totally nailed the idea of using a toilet on our 275mile drive this week, but couldn’t handle a 40minute nap on the bike. However, we were able to test out the new rain pants, and they do stay dry, just not in the way the manufacture intended. He was also a champ about not wearing mittens. He used his pockets. Smart thinking tike. There were keys and toys in the pockets.

So now we are home for a short spell, passing time with some coconut curry for me and a little Netflix and raisins for him. Then we are going to drive up to retrieve the other three children. My legs are spent. Seven slow miles and I feel like I ran a marathon, not that I have any idea what running a marathon feels like, but my legs are jello.

Now, if I could only make up places to go every day. Oh, and people to go places with. That’s always a delight too. Sunshine and friends. Perfect bike weather.

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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?

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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.

Conclusions
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.

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