willandadri.com

we’ve been busy folks lately and wanted to make sure we took time to post our stories, as well as all of the photos that document will’s journey over the past week.  we’ve been to the beach for will’s b-day, we’ve picked up lori from the airport, and we’ve spent the week at duke hospital in durham, and come home to get will on the road to recovery.  below is a photo collage of the past week.  we’ll get back to the written documentation as soon as time permits.

4/23

its going to be interesting to see how our blogging develops with us both sharing our own individual sides of the same story.  mine always comes with photos.  i have the camera, so i take the rights to posting.  no, seriously though will did confirm he’d like me to take pictures of his chiari journey.  you know me, any chance to take photos and i am all over it.

will has said everything i wanted to say regarding the surgery and the processes we’ve been through thus far.  the only thing i would like to add is how proud of him i am.  its not every day that someone can accept, handle, and cope with the stressors of impending “brain” surgery with grace and dignity, but will has done just that.  i’ve always been proud of him, but this trial in our life has reminded me how lucky i am to be married to such an amazing human being. 

loving you.

To learn more about Will’s condition visit the following site:
www.asap.org

recently we’ve been swamped with prep work for will’s upcoming surgery.  we’ve consumed every waking minute with thinking about things that need to get done prior to the surgery, worrying about the surgery and its aftermath, or trying to occupy ourselves with things so we will not think about it at all.

if you are scratching your head asking “what surgery”?  then let me throw this car in reverse.  (beep, beep, beep, beep – that is my back up noise.)

will’s been experiencing back pain for about a year now.  at first we blamed it on our 13 year old bed, then we would blame it on how he sat in bed till 3am working hunched over a lap top, then we blamed it on too much yard work, and then finally in january he got to the point where he was having trouble getting out of bed and we figured he better go get things checked out.  he went and saw our primary care dr. who had him get an mri.  he had the mri done and then waited for a few weeks for the results.  when he got the results from our primary doctor she told him he had bulging discs and then scared us with some crazy terms like “chiari malformation”, but quickly went on to tell us that lots of people have that, and there was “nothing to worry about”.  she said what concerned her more was a pocket of fluid on the spine.  she referred us to a neurosurgeon.

i am not sure why the referral did not scare me, or why i did not really think too much about it when she said the word “neu-ro-sur-geon”.  well, we went on about our lives, will in pain and me in a fog and waited for the doctor to call us back with an appointment.  after a month of no action will called back and lit a fire and got an appointment.  we went into the appointment armed with a notepad full of questions.  we were ready with all of these:

• can he get acupuncture?
• can he go to the chiropractor?
• what about a doctor of osteopath?
• will massage help him?
• is there any homeopathic medicine he can take?

our appointment took forever and we were delayed about 3 hours before we actually got to see the neurosurgeon.  when we did see him he had not received will’s mri and could not confirm or really tell us much of anything.  however, in the brief 5 minute period he did spend with us he informed us that he could simply cut into the back of will’s skull to make a larger opening for the cerebellar tonsils and then the fluid would flow more freely and we’d be all set.  well, then, if it was that simple let’s just get right to it!  omg!  the freak out began.  we just closed up our little notebook of questions, and went home.

we got in the car and looked at each other like all of the wind was let out of our sails.  i kept trying to convince will that the doctor had not seen his mri and he really did not know if that was what will needed or not.  all the while this was helping me to not lose it.  we called family and friends and i went into full on investigation mode.  you would have totally called me “baby” from criminal minds.  my google fingers were fast and furious.  we learned what chiari malformation was, and also figured out the big word the neurosurgeon used that we’d never heard before – syringomyelia.  we dug and unfortunately found out that the doctor was 100% spot on.  this was exactly what will needed – a posterior fossa decompression surgery.

since that appointment we’ve schooled ourselves on this, will’s had further mri testing, been to another neurosurgeon, and met again with our first neurosurgeon and decided to have this surgery on the 27th of april at duke university hospital.  the surgery is called a lower skull base surgery and basically enlarges the opening at the base of the skull to allow the cerebellar tonsils to hang as they may, while still allowing the spinal fluid to more freely circulate, thus eventually alleviating the syringomyelia and relieving the back pain.  the surgery will have will in the icu for 24 hours and then in the hospital for the remainder of the week.  when he comes home he will be on bed rest and on heavy pain medication.  we’ve got lori flying in to be our chiari support staff.

however, hopefully in about a month’s time will can start to notice a decrease in his back pain and will hopefully be fully healed from his surgery.  doctors advise that he keep things low for 60 days post op, and our only major upcoming plans after his surgery are a trip to corolla in september. 

so right now is a time of being busy bees – to distract, while at the same time totally focusing on what is happening.  it’s the strangest predicament.  last friday we went to art after hours and listened to live music on a 1950’s swinging glider rocker outside of the sunflower studios.  we just rested our heads on each other’s shoulders and sipped our coffees while we listened to the words of the songs and watched the stars in the sky.  both of us are nervous and scared, but we know we are doing what’s best, what’s preventative, and what’s got to be done before his condition gets any worse.

we were on the go like wild fire this past weekend.  friday night we headed out to do some mattress shopping.  with will’s upcoming surgery we thought it really made sense for us to go ahead and purchase the king sized bed we’ve been dreaming of.  we went to haverty’s and tested out about 30 different styles and brands.  we felt a little like goldilocks, but felt we really narrowed down exactly what we were looking for by being thorough.  after looking at haverty’s for about an hour we decided it was time for some dinner so we headed to waraji.  we always love waraji’s sushi and were not disappointed by this visit.

saturday morning we woke up early and headed to the farmers market.  we picked up some heirloom tomato plants (3 different kinds, one purple, one green, and one pink), some thai basil, some organic honey, some red pepper sauce, and some lime cookies.  we then got our traditional wake forest coffees and hit the road to furniture land south in high point.  back when mom and dad were looking for furniture for their new house, i went with them to this massive location where you can find furniture for up to 70% off retail.  i figured this would be a good spot for us to go look for beds.  we arrived at about noon and headed to the clearance center.  we tested out all of their mattresses and found one we really liked for $200 less than haverty’s price.  after we selected that we headed to the regular store to look at their bed selections.  with 4 floors of furniture spread over two buildings they have just about everything you could imagine.  we worked with an associate who informed me that they were able to order the bed of my dreams, but it was not on the sales floor.

you see, i have wanted a particular bed frame since 2007.  i found the picture online and book marked it to occasionally look at it and drool over it (knowing i could never get it because it was too costly.)  however, i figured we would just give it a shot and see how much it costs, after all everything is discounted!  the sales associate drew us out some maps and told us she would call will’s cell when she got the pricing on that bed.  we wandered around for hours, not really finding exactly what we wanted – and did see a similar bed that we liked, but it was nine thousand dollars!  gulp!  it was shortly after this that we ran back into the sales associate who said she tried to call us, but left a vm. (when we got home we heard her message on our home machine.)  she informed us that the bed i wanted was 60% off the retail price!  we were so shocked we told her we would continue to look around, but i confirmed with will that he loved it as much as i did and we thought it was a go.  we were so dumbfounded we thought for sure she made a mistake, so we reconfirmed that it was king size and it was for the entire bed, not just the head board etc.  she chuckled and confirmed it was for the entire king size bed. 

so, after going to the show room and looking at the quality construction of their other pieces, getting warranty information, and hearing how each piece is hand carved and constructed, we decided to place our order.  i was still in shock, and think i still will be until the bed actually gets here!  now we just have to decide how we want the furniture laid out so we know where this goes when it gets delivered.

we made it home around 9pm on saturday night and headed out to walk the doggies and do some relaxing before we needed to get up at 5:40 the next morning to get ready for sunrise service at church.  it was the first easter that i did not dye eggs, and i started regretting not doing this around that time.  however, with no dye and no energy no eggs were easterized this year.

wake up time came early on sunday morning and i popped out of bed like a bunny ready to get gussied up for sunday service.  we were only 1 minute late for the 7am service, which we were both proud of, since we are famous for being late to everything.  the service was small and intimate as we gathered around the 6′ wooden cross on the side of the church.  pastor matthew called for us to take stones (we’d previously been asked to gather) and lay them at the base of the cross as a symbol of something that we needed to push/roll aside in our journey with Christ.  will and i both found the service very moving and were super happy we’d woken up so early.  after the service dave prepared a delicious pancake breakfast and we chatted with everyone before heading out to greensboro.

when we made it to greensboro we checked out some plants at lowes and tried to make a plan to re-organize our front flower beds.  we’d had dwarf nandina bushes in our front beds since we moved in, and they were never our favorite.  not finding anything we liked at their lowes we decided we’d head to our own store after we got back to wf.  later on we headed to print works bistro at the proximity hotel for an amazing easter lunch.  we tried escargot for the first time, and i finally found something that will does not like!  he made the most terrible face and threatened me with vomit if i made him eat one more bite.  we decided he could never be on “no reservations” or “the amazing race” since he had such an aversion.  however, i found them to be a lot like clams and mussels and i consumed the entire app myself.  after lunch we headed outside to rest on their patio and admire all of their beautiful plantings.   once we’d hung out in the sun long enough we decided to make our way back to wf.

we got home, changed clothes, and headed to our lowes to look for nandina replacements.  we found 27 plants we thought we needed to take home and promptly filled up the jetta and headed home.  i began digging up bushes and before we both knew it we had an entirely new looking front plant bed.  bye bye nandina!  we both really love the look of the new plant bed, and now we just need to get it mulched and we will be good to go!