sweet and sour

Quick update because there is a lot to process.

SWEET:

The folks administering pulimonary testing were great! Don't know the results yet but exercise is looming in front of the gentle giant.

We went to a group education class to explain POTS to two other kids and their parents. It was thoughtful abet too cheery, but shared lots of info.

POTS-- postural orthostatic tachycardia syndrome.  Part of diagnosis which we knew but knowledge of it and treatment options much more fleshed out.

SOUR:

Hmm, not eating the lemon but sucking the rind.

Houlder saw the neurologist today basically to see if their were any prescriptive ways to control headaches. Good news is that through all the various Neuros I have dragged Houlder to in the last year he has had every treatment including Botox that is out there. So, I guess that is sweet.

And I guess it is sweet that Dr. Mack looked over every sheet of paper we brought and read all the images himself.

So, here is the bitter. Last year during our first hospital stay, I pushed the Neuro to order a full MRI in case they were missing something. It came back okay with some inclusive stuff. We were told there was nothing wrong. No one seemed to notice his low hanging tonsils. Not the ones in the back of your throat but the bottom of your cerebellum that hangs above your spinal column. Those tonsils -- the ones on your brain.

It could be that they interrupt the flow of cerebral brain fluid. They could be just a little low and nothing wrong. Or he could have chiari malformation.

I wrote about Chiari in March. Frazer has it but is mainly asymptomatic although lately he has been showing some signs.

Any of these could be effecting the POTS, the headaches, the dizziness, and so on.

Yeppers.

We are here until Wednesday now. MRIs, special tests, neurosurgeon, and neurologist next week.  He has more testing and doctors tomorrow.  It's why we are here.

Plus, another visit possibly in June but hoping to bring Frazer then too.

Learned this afternoon while we meet one-on-one to plan an exercise schedule and program for Houlder that we may need to stay another three weeks for this pain program.

It will depend on some of next week's tests and doctors.

Sweet and sour. It is a prickly discomfort to know Houlder may need to cope with more, but I am grateful it was noticed and being further explored.

Off to dinner.

One of the rewards of laboring on a house project has been the gratification of accomplishing something tangible. While certain jobs like parenting or teaching require intrinsic motivation, knocking down a wall or planting a garden offer measurable accomplishment although maybe not perfect results.

The journey of uncovering a doctor and a hospital that can fully diagnose and treat Houlder dances in between the internal drive to help Houlder by looking into his eyes and knowing he is well and the external push to find complete, integrated and well-delivered care. In this process William and I did not spend a week or even a day without thinking about how his treatments were working and what else we should do. Mayo calling and his crashing synergistically gave a purpose. A real place. But, in our hearts we held uncertainty. Competing emotions of a loss of confidence in the medicine yet encouragement by some doctors who never stopped believing or wanting to help Houlder.

Two nights before we left, his new pediatrician drove to house to deliver his write up on Houlder, and it was by far superlative.

Walking into Mayo, we snapped some photos of Houlder wearing his Village Green Fair tee shirt to send into Collegiate. They have a contest to see where the tee shirts end up over break. I doubt there have been many hospital submissions.

Mayo is well designed, easy to navigate, full of light and art. Very appealing.

Minnesotans must be the friendliest people I have met. Sorry, Virginia, but hospitality has gone to the Mid-West.

While folks around the country voted on Super Tuesday, we met the super doctor of POTS and autonomic dysfunction.

Dr. Phil Fischer was funny and warm immediately calling Houlder by his middle name Love asking him the single most important question; "What do you want to get out of being here? Do you care more about diagnosis or ways to treat how you feel?".

I could wax poetic about how he talked with us for 2 hours followed by an interview by a researcher evaluating what worked and what did not.

In awe I looked at a pile of binders by the examining room door that had been delivered by hand in July by a wonderful SRA friend.

I could go on and on.

We feel good. Houlder feels exhausted but 100% that he will improve and he is where he needs to be.

The rest of the week is full of more tests.

We meet on Friday to go over all results. Every hospital should function this way!

Dell ripped out the bathroom floor and saw a movie with my dad; Frazer and Porter spent the night with friends. William got some office work in and few hours of quiet.

A super Tuesday by our standards.

57 doves in Peace Plaza -- tons of statues everywhere

porter and z having park fun

VGF

Frazer and Thomas drying some apples

an extra layer of ugliness for Dell to ripe out

dinner ambiance

Z and P hanging on

VGF

This pile of ice had melted by 3pm.

Thinking of William

Netflix thank you

calling in all the good juju!

Butterflies

A peculiar sensation about destination medical care such as Mayo has been looking around and wondering how many other folks are here for the same
reason. On our flight to Rochester, a few folks appeared to be headed there-- their illnesses more outwardly apparent than Houlder's. I wonder what people might have though about us.

Looking at Houlder, my 6"5' burly man-son, who would guess how physically disabled he has become, how intense his brain fog is, or how he grabs the walls or my shoulders so that he does not pass out? Houlder has perfected the art of subtle need partially by design and partially due to being
16 years old and wanting to be an unencumbered teen.

We experienced all things airline related on time and no snow delays. Houlder and I had nothing to do on Monday. We had no wake up time, no time constraints, and no one else's needs to consider. We lolled --I read, he mine-crafted, and we both facebooked. We got up, had breakfast, explored Peace Park, a cool Barnes and Noble in a former movie theater, ate lunch, and Houlder crashed. He made it back to the room, but appeared almost to be stroking out.

I just breathe through it all. Grateful to for the promise of Mayo but holding a piece of my heart in check, protecting my feelings and perhaps Houlder's from disappointment. After two hours of massage, he relaxed enough to rest.

I scooted to pool and hot tub for an hour. I needed the time.

The hotel has a cocktail hour (free!) and it was packed with Mayo folks. The waitress knew certain patients by name. Folks recognized each other. We had an older couple chat with us in great detail about how Mayo had saved their lives. I wondered if this would be us by the end of the week.

Houlder did not feel well and headed back to room. I stayed to finish my wine with some guilt but maybe not enough.

By 7:45 I was back in our room. Houlder was restless, agitated and hungry again.

Room service.

More restlessness but then he succumbed to the sleep angels.

I fidgeted, facebooked, played words with friends and watched hgtv. I think I
might have slept an hour.

I feel as if we are about to lay out our soul and are praying and hoping
that the care providers here have the magic and skill to make us whole again.

All the while on the home front, William and Porter, age 7, lay a new kitchen floor, William and Dell ripped out a
toilet, and Frazer did some schoolwork. Oh, and it snowed. Face time, an apple thing, gave us face-to-face conversations. It was hard to have Porter, the contractor since birth, cry how much he missed us and would these doctors "make Houlder better."

Million dollar question sweet boy.

Karma, juju, prayers, naked dances under the moon, angst -- whatever you have my friends -- please include Houlder in your rituals this week.

Because here we go...hence the butterflies.

resting in Peace Park with Mayo Building in background

nifty inside too

view from our window-- destination Mayo

gone

banana cream pie

every 7yo should be so gifted

finished

H

snow day at home

Peace Park

On the ground

In a mad dash, I packed. Funny how it seemed to drag, but it did. I was trying to pack lightly to have an easy to tote bag, warmly to be able to walk around downtown Rochester even though we can manage our entire time here without going outside -- too weird,-- and plentifully to avoid using the coin washer/dryer.

William prepared a big lovely breakfast. While we sat around the table we had made and had two competing thoughts: we will not be together like this for a week and for one week I won't have to fix meals, clean up or listen to the diners complain about their meal.

Before I left, Porter needed me to document his latest tooth fall out. Fortunately the Tooth Fairy arrived although Friday night I forgot to call the 800 number to let her know Porter had a tooth for her.

We had a family photo. I brought some
Gamberian good luck with me with my 43022 hat (zip code for Gambier, OH). Porter and I had a special photo, because "You'll be missing me momma."

Included is a little documentation of the departure drop off, lunch in O'Hare, Houlder playing mind craft while waiting for flight, Dell painting a primer over the yucky wallpaper that will be GONE when we return, Houlder sitting down verses passing out while we wait in the chill for a cab or shuttle, and finally relaxing with my medicinal wine and smile.

I am trying using the iPad only this week and the blogger app. I can figure out how to add photos and cannot preview. I hope this turns out.

There is no snow here! Today will be in the 50s.

Irony.

Goodbye wallpaper.  Thanks Dell!

Shy guy at lunch.

First sigh.

"In case you miss me momma."

Not as boring waiting for flights as it used to be.

The bulk of the snow thus far

tolerance

Gamberian powers activate!

My rock

Dinner

produced the smile

Leaving on the jet plane

Smile to hold me for miles

Fifty Percent

Porter reading to Houlder

 In 1982, my 8th grade class traveled from Frederick, Maryland to Kings Dominion in Doswell, Virginia.  I was 13 and rode my forst roller coaster the Rebel Yell.  I had no idea when I got on that the cars would creep up that first incline so slowly.  I was worried that we might not make it.  And then suddenly woosh, we were off.  I would not say I became a roller coaster enthusiast but I ride them. 

Life for the Hudgins is the creep and woosh.  Plugging along trying to find humor in the black cloud hanging over our lives. 

When I first contacted Mayo last May and they told me it would be 15-18 months before they could see Houlder, I lost it.  I wept.  In January I wept to receive the call offering us this appointment in March.

Frazer reading.

And, then we plugged along. 

As I type this I am unpacked but mostly ready.  William will stay with other boys who are on spring break and lay new floors and renovate a half bath.  Some families go skiing or the Caribbean, Houlder and I head to Rochester, MN where it is snowing and they got a fot of snow last week.  Fortunately our hotel is attached to Mayo via a skywalk. 

I will try to update but basically he will meet with one doctor and have bunches of tests and exams.  We will be there at least a week.

I have books loaded on the ipad and am taking a few paper copies. 

Dell hanging with Jack the cat

Relaxing.

Dell on block for final swim meet of season

Jack and Annie suffering

Frazer and two buddies's geodesic dome out of newspaper

Porter Tiger Cub

The 43022 and purple and yellow m&m cookies for Shaka.  Trying to help a friend.

Porter ripping up the floor

Labor

Porter and Frazer with two friends on an overnight whale watching trip to VA Beach

So this was how we creeped.  Tomorrow we take off.  Thanks to all who have wished us well, hugged me, taken a child, accepted that we have to laugh in order to survive, and who are friends.  Praying for a cure but will accept something to give Houlder his life back.

Seven.

Every day begins with a list -- the items to add new for today and the items to finish from the day before, or even the week before.  I may write this list in my calendar, on a To Do app, in Evernote, or the back of a envelope.  I don't often refer to it once I have stated my objective.  An evil blessing or a kind curse allows the list to ticker tape in my mind through out the day.  At night, I mentally cross off and add more trying to figure out how I will accomplish said goals.

It has been years, or never, that the list has been empty.  As William can attest, I generate things that "need" to be done in my sleep.

This week and weekend, I have given special care to laundry.  I don't think we had hit a point since Thanksgiving that each person had their laundry mostly away verses mostly in process.  As much drudgery as laundry can be, I felt good as I trucked down to the basement multiple times to make sure everyone has clean clothes.  Tomorrow I go in to have one screw surgically removed.  It is a bit early but I have been having trouble with it.  Nothing like rolling over in my sleep and being poked by the screw in my leg.  It is both an odd feeling and one that has kept me awake for days. 

Sleep has been super elusive.  I watched all Downton Abbey in two nights on netflix.  Great show.  Looking for another series to keep me company at 2am.  One thing I have not crossed off list is the to do list for Mayo.  As we are a month out, I am beginning.  Sometimes every day life and living in the moment is more fun than prepping. 

For those who follow and care, Houlder is still weak and not going to school.  He has improved ever so slightly in that he is not in bed 24/7.  More like 22/7.  I have been working on long division with Frazer.  After two weeks I feel like we are making progress.  Wowza.  I am trying to remember if this was tricky for me to learn.  I don't think so but I am challenged to keep thinking of ways to explain the steps.  Thankfully Frazer is patient.

Final swim meet Saturday and lots of birthday parties for Porter.  I hope this recovery is simpler and less complicated.  I have planned ahead for food and driving and life.  Hopefully this removal will decrease the pain. 

Will Christmas morning 2011

Christmas Eve service

Porter leading first grade Chapel January 2012

Susie January 2012

Frazer January 2012 -- 12th brthday

Dell and Porter January 2012