willandadri.com

last tuesday lazaro (pa) called and threatened will and i with more surgery to resolve the camel hump on the back of his head.  the thought of this sent us into a tail spin worrying about all of the progress we’d made thus far and how more surgery would be so devastating to both of our spirits,  will’s lack of vacation time, the length of time you had to be out of work before he could claim his disability, and if we really could emotionally handle all of this once more.  monday was the fateful day we were to head back to duke to speak to zomorodi and see what he suggested.

we prepared for the worst and both tried to stay calm before the appointment.  we nervously sat in the waiting room waiting for his name to be called and made our way back to the office.  once in the room he looked at will’s hump (what he likes to call a pone) and declared that it looked smaller and not as tight as it was the last time he took a gander at it, and decided that he’d just do a spinal tap to remove some of the pressure and then wrap will’s head as tight as he could to try and force the fluid back down.  most people (including will, since this was being done to him) would be terrified at the though of a spinal tap, but i threw him right under the bus (totally full of passengers) and said that it sounded like a great idea to me!  after i shot my big mouth off i glanced his way and he agreed that he was up for anything to avoid more surgery.

they quickly prepped us for what was about to happen and told him to get into a gown, get into a curled up cat position (otherwise known as the fetal position) and to bring his legs up as high as he could.  when his holding of his own legs were not high enough up, i offered to assist.  after three attempts with longer needles and more lidocaine and will still in terrible discomfort the doctor just could not torture him anymore and told him he would have to have it done under x-ray.  i could tell how disappointed will was since now he would have to torture himself about it for the next 24 hours.  after getting him suited back up and scheduling the appointment in x-ray for the following day we headed back home.

this morning we headed back to duke, this time to the regular hospital – not the clinic – and headed to radiology for the spinal tap procedure.  will’s hands were shaking, both from nervousness and the 400mg of caffeine i’d filled him with.  we got him settled into the waiting room and again waited for his name to be called.  they brought us both back and showed us the x-ray machine and we explained our nervousness and they tried to ease will’s concerns and explained the procedure to him.  the radiologist said he felt this would be less painful since they know exactly where they are headed.  after they did the intro they kicked me back out into the waiting room.  they’d explained previously that they would keep him lying down for about 2 hours to ensure that he did not get a severe headache from the procedure, so when i saw the bed being wheeled in about 30 minutes later i knew he was all done and ready to be moved to recovery.  the radiologist came out and gave me a thumbs up, and off we went.

they let me stay with him for a few minutes just to give a smooch and then he was headed to recovery.  the nurse told me that if i had not had lunch that this was the time to go.  i headed to the very familiar cafeteria and picked up my regular sushi and cucumber platter and sat at a table and began texting everyone the good news.  as soon as i could scarf that down i picked up a frappuccinno for will out of the cooler and headed back to the waiting room.  the nurse finally called back and said that i could go back now.

will looked good and said he was not in much pain, just feeling pressure right now.  he explained the procedure was not smooth sailing like they thought it would be, but he survived and lived to blog about that himself.  i’ve nicknamed him “aunt jemima” due to his head wrap.  (he looks like a cutie.)  right now the swelling is totally gone and the back of his head is completely normal in the wrap.  the wrap stays on for 48 hours and we just pray that this does the trick and has will completely on the right track this time.

overcome with gratitude.

dozens of people have come to our rescue.  we’ve been given dinners, desserts, groceries, a/c filters, assistance with chores, offers to run errands, our lawn fully mowed, our plant beds fully weeded, favorite meals delivered, baskets of fruit, baskets of get well and relaxation therapies, plants, almost 100 cards, countless phone calls and emails, and uncountable numbers of prayers for healing.

its humbling to accept the outpouring of other’s hearts.  we honestly never knew we had this much support in our lives, and its times like these when they tell you that you find out who your true friends are.  what we found out is that we have more true friends than we could ever imagine.  we thank GOD daily for all of the blessings in our lives, and the times we have to spend with each other and with our friends and families. 

i could never offer up enough thank yous to everyone who has gone out of their way to make sure that we were well taken care of and never left alone.  these three simple words just do not seem to do it justice, but its all we can offer – WE THANK YOU.

today was will’s first haircut since he had surgery back in april.  he was a bit nervous about going for the cut, but happy to get it over with.  a hair cut just always makes you feel better, and mario (will’s barber) always talks with him and does a great job.  having the hair trimmed down makes it easier to see this bump thats creating all of the havoc over  here.  hopefully now we can monitor it a bit more easily.  we will keep our eyes on it and pray for good news at the neurosurgeon’s appointment on monday.

Will woke up this morning with the bump, still strong and in full force.  However, as he listened to the music while I was cooking, and then came to write his blog, and then later ate his breakfast, the bump dissipated.  We were chatting at the kitchen table when I looked up and said that the bump was gone.  He reached back and felt the back of his head and could tell that it really was gone.  He prayed for healing, as I’ve been doing daily since before the surgery even occurred, now let’s just pray it stays this way.

We always both turn back to this song from Casting Crowns in times of life’s trials and tribulations, but it is ever so fitting.

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it’s still raining
as the thunder rolls
I barely hear You whisper through the rain,
“I’m with you”
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

Chorus:
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

And, we will continue to praise God in this storm, just knowing that he knows the purpose for our pain, our trials, and our lives.  We just pray that we are wise enough to listen when he’s calling, and know that he is always with us.

sleepy mc sleeperton was lurking around the barnhill today, but i woke him up with some tasty vittles and got him set up on his lap top.  the bump has gone down in size today – we got a measurement of 23 1/4, but the headaches persist.  i’ve even developed one myself.  sympathy pains?

we were hoping to get some fun in tonight by going to down town wake forest’s art after hours, but husband’s headache was just too much to risk heading out of the house.  instead i ran out to our latest chinese restaurant and grabbed us some tasty dinner and rented “the invention of lying”.  we love a movie (even if it’s a giant cheese ball) if it has a happy ending, so this was a good distraction from the fact that we’re trapped in the house.

praying for a pain free rest of the weekend!

Husband has been posting all of the juicy details for your reading pleasure, but here I am with the most recent photos.

Other than us constantly monitoring the size of husband’s camel hump, (24 3/4 at the moment) we do not have much going on. Lisa urged me to dedicate the following song to husband today “My Humps” by the BEP.  Husband – this one’s for you.

Bored as we are, we do know the following, the neighbors appear to be completely moved out to the left of us now, and behind us a new house is under construction. Since we are mostly hanging out around the house we’ve got tabs on all of this in/out of the neighborhood.

We hope husband’s new medicine regimen will keep him on the road to pain free recovery.  Tomorrow night we’re planning a little bit of a night out in down town Wake Forest, so we shall see how it goes.

so we’ve determined –

the size of the bump is directly proportional to the size of the headache.  will’s fluid filled “bump” on the back of his head was monitored by ct last friday and it was determined that it was just a fluid filled pocket, and nothing to be alarmed about – that it would just go away on its own.

however, it grows and shrinks just according to how it feels every day of the week and every hour of the day.  however, the one thing we are sure of is that the size of the bump correlates to the intensity of the headaches that will suffers from.  unfortunately we do not have the magical morphine at home to help keep these headaches at bay.

fortunately tonight we did know that we needed to attack this thing with pulled curtains, silence, extra flexeril, extra arnica phosphorus, arnica montana, coca-cola, a lavender scented candle, and lots of love.  luckily i think we knocked it out of the park.  hopefully it will stay that way.

large thanks go out to will’s cousin lisa white for our scrumptious dinner this evening.  lisa stopped by tonight with a tasty chicken cheesy casserole, tortilla chips, and red white and blue cookies.  thanks to her for keeping me away from the kitchen, out of the dishes, and husband’s belly full of goodness!  hugs to lisa!  we owe you big!

we found out this morning that we have a follow-up appointment on wednesday at dr. zomorodi’s office at 1pm.  they are going to evaluate the incision, see if stitches can come out, discuss the scarring, and the BUMP!  hopefully we can get will some better pain management, and some answers to the things that have been plaguing us recently.  get this bad boy under control!

apparently i was such a sad sack yesterday i’ve convinced my poor momma to come to town for a few days to help me get things under control.  she’s such a sweet little thing to come and help me, i just feel bad that i am 32 years old and still need her to come bail me out.  however, either way i can’t wait for her to get here.  sometimes when you have all of this pressure on you, you just like to be a little kid, if even just for a moment.

you don’t know what you have until it’s gone.

lori left yesterday.  she’d been scurrying around for weeks to keep up with dishes, laundry, errands, doggies, pills, tears, and anything else you can think of.  we sent her home so she could be back in time for chris’ birthday and a trip to london to spend some time with her girl friends.  however, just when she left my body seemed to get overwhelmed and worn down.  i’ve come down with some stomach upset and a possible ear infection and we slept right through two sets of husband’s meds this morning after the power went out last night and killed our alarm clock regimen.

i should be strong enough to handle all of this on my own.  i really should be.  maybe its the lack of rest (although we slept about 14 hours last night), just the reality of dealing with it all, or the feeling of being alone when you know you should be strong.  i just wish i could do more to comfort will and make his pain lessen, but i can’t.  the frustration of that compounded with my own issues are making my glasses get speckled with salty tears.

he is sleeping now.  thankfully the new arsenal of medications compiled with arnica overload has him pretty good, so long as we stay on top of things.  there’s just lots of sleeping and resting to be done.  if i felt better i’d head to whole foods and load our house up with some wholesome food for the week, and stock up on some new arnica pills – but its a jaunt down capital and i don’t want to leave him alone for such a long stretch.  we need a delivery service in wake forest.  that could make things so much easier.  oh well, what can you do?

mom and dad surprised us with a 20 hour visit and were kind enough to take lori back to the airport for us.  when we got back from the er on friday night they rang the doorbell with will’s favorite dinner of manicotti and ceasar salads for everyone.  luckily will felt well enough for a little while to sit up and enjoy his dinner before heading back to bed for more quiet/dark time to sleep his headaches off.  the rest of us played scrabble (or tried to anyways – appears that some of us like to bend the rules too much) to keep our minds off things.  after scrabble we headed to bed.  saturday morning we got up in a scramble and will said he was well enough to go have some breakfast so we all got some waffles before lori, mom, and dad all had to scramble back out of town.  like the wind – they were gone.

will and i rested for the rest of the day until 7pm we decided we’d grab some hamburgers and eat them on a swing in a local park.  we got about half way through our burgers when i got an immediate onset version of the roto virus and we had to scamper back home as quickly as possible (luckily this was temporary and seems to be gone today).  we called it a night and slept right through the power outages of the night and have been lumps of coal again today.  i’m hoping we can shake this funk.

Big D sent us some amazing cupcakes to brighten our spirits this week. Lori picked them up and we all got to sample some delicious treats! We’ve rotated through the box all week, trying a new kind each night. Yummay!

The scarring is healing nicely and the bump fluxuates in size depending on the time of day and day of the week. Arnica Montana seems to keep the swelling a little less severe, but still does not get rid of the bumpage all together.

Wednesday we tried to get hubbs out of the house for some lunch. He’d been feeling really good and we thought we were up to some greatness when we got out of the car and found a head’s up penny in the parking lot. However, too much heat, sun, or allergens in the air made for a rough evening on Wednesday and a tough day today.

Last night Lori and I tried to lighten the mode with a GUACAMOLE THROWDOWN (Bobby Flay style) in honor of Cinco de Mayo. We gathered up our ingredients and began to chop, blend, and spice our way to some yummy looking guacamoles. We called husband in and asked him – ARE YOU READY FOR A THROWDOWN? He replied that he was, but it was a little lackluster. It was all he could muster. However, when he got to the table and saw what we had to offer he warmed up a bit. He played along and sampled each guacamole and posed for the camera. He gave us commentary on each guacamole and what he liked about each one and then selected “A” as the winner! It was Lori’s batch! We all enjoyed the Cinco de Mayo treat and called it an early night.

Sleep, sleep, sleep, and more sleep is all we’ve seen husband do since the sun came up this morning. He’s got me worried since he is not a big nap taker, and since he has not really slept any extra since the surgery occurred. I go into the bedroom every hour just to make sure he is still sleeping and check on him. He’s sawing logs.
When he got up this morning he said he felt disoriented, headachy, and a bit dizzy. Lori got him more caffeine in the form of a vanilla latte, and went to Whole Foods for more Arnica pills. He sat up in the bed for about an hour and was then sleeping again. Now he has a pillow over his head and the curtains drawn.

Migraine? Too much oxycodone? Side effects of the oxy can be headache and dizziness. I decided let’s remove the oxy from the equation for the rest of the day and just give him acetaminophen when it’s time for that pill batch. Let’s see if that helps any.

Helpless. Just makes you feel so helpless when someone you love is in pain and there is nothing you can do to assist. I’d do anything to make his pain stop and have him back to his happy old self. Hopefully we can get him feeling better here soon.

Finally, 4pm he woke! He seems to feel better than he has in a few days. Hopefully we’re on to something here!

It seems almost surreal that one week ago we were sitting on the beach listening to the waves crash, and today we are watching husband quickly recover from his posterior fossa decompression surgery.  So much has transpired over the past 7 days it is really hard to fathom everything that we’ve been through.  Sometimes I still find myself overwhelmed by God’s grace that got us through all of this.  We were so worried, so nervous, so scared, yet Will has come through everything with strength and dignity about it all.  Sure, he gets a little depressed and irritated with being laid up sometimes, but he comes through it within minutes and is back to himself.  He’s on high dosages of medications that he takes around the clock.  Lori and I are here to remind and administer the medications just about every two hours.  While I am working, Lori is on the day time shift, and then I take the night time route.  I set the alarm clock every two hours while we “sleep” to remind us to get up and take his next dose.  No complaints from the patient thus far.

We were given many gifts to get us through these trying times.  Lori handmade me a necklace with special stones that aid in healing and processing of trying times, she also made herself and Will some Chiari/Syringomyelia awareness bracelets/necklaces that have tiny amethyst stones and tiny skulls on them with purple and turquoise ribbons.  Mom sent me a silk scarf bordered in bright yellow to remind me of the strength of the mustard seed.  The numbers of cards, flowers, balloons, gifts, and neighbors dropping by with food is something I still find hard to process.  I know Will really can’t fully grasp it all himself.  However, we feel the love from our large circle of supporters and thank you all for everything you’ve done and continue to do.

Each day gets easier, and the gravity of the entire situation seems to begin to lift.  We just cannot reiterate how thankful we are that the condition was caught so early on, and that Will has not endured any permanent damage.   So many others with these conditions are not so lucky, and we just hope that Will’s story will raise awareness for someone with these symptoms to get them checked out so they can be saved from the horribly crippling pain that these conditions can cause.