Tag Archives: GBS

Breakfast & Bicycle Benefit Recap

It’s June 2013. June. This entire year has been lost to a void and yet filled to the brim with many-many experiences. At some point we need to stop blogging about Avery’s GBS, but it has consumed us. Everything we do all week long is in some way related to his recovery. Every time I leave my house, it is for him. The conversations turn from every angle, back to Avery. There is nothing on our calendar for the remainder of the summer that isn’t for Avery. Therapy, baseball, appointments. It’s not that we aren’t doing anything else, but all other doings are happening organically, as they arise.

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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Community Benefit Events for Avery’s GBS Expenses

BikePancakeFundraiserSeveral of our friends and community members have worked together  organizing two fundraisers to apply directly toward the medical expenses incurred during Avery’s GBS this year. There will be a pancake breakfast on Saturday morning at Our Lady of Fatima, followed by a bike ride at Ritter Park led by our Critical Mass organizer, Joel, and bicycle raffle drawing thanks to a donation from Huntington Cycle & Sport. The generousity of everyone ceases to amaze us. We are indebted in gratitute to everyone. Even if you haven’t said as much, I know you are thinking of us, I can feel it.

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

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.

Life After GBS

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.}

Guillain-Barré Syndrome {part 3: rehabilitation}

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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.

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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.

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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.”

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Being fit for AFOs, aka “doing science!”
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Tape, foam and rubber tools were added to utensils, pencils and tooth brushes to aid his grip.
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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.

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

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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.

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

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

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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.

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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.
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Home, putting on his own socks and AFOs.
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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.

Guillain-Barré Syndrome {part 2}

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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.

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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.

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EMG
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Taking his own vitals.
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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.

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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.

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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.

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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.

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“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.

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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.

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Tilt table to help with weigh baring.
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Family time in the Blue Jackets room.
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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.

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