The Update on Frazer, Star Date June 25th, 2014

The Fraz Man.  A well-loved boy if ever there was, there was because what's not to love.

Here we are five and a half weeks into our time at NIH with Frazer in the study on COS.  One-third of patients in study end up not having COS diagnosis.  Frazer remains clinically "undiagonosed," not showing signs of psychosis.  The doctor is extending his wash out phase -- the period without meds -- another two weeks because two and a half weeks into this wash-out they are noticing some odd behaviors.


There are some complications.  What's new?

Genetically:
The team is testing for two specific genetic syndromes which may account for some of Frazer's behavior and other physical issues.  Of course one of these syndromes has only 50 known cases in the world.  Pretty "rare."  However, at NIH, we have met people who are the only two known cases of a genetic syndrome.  As Porter said after learning this, "I guess 51 is not a big deal."  Results of these are about 4 plus weeks out.  Should he have one of these specific syndromes which would include hallucinating and hearing voices, Frazer then would no longer be in the COS study long term.  That does not mean NIH kicks us to curb without a solution.  And finding meds could take 4-6 weeks.  But, it means his condition does not fall under the psychiatric label even though some symptoms fall there.

Liver:
NIH likes blood.  Blood draws are frequent and after several weeks of liver numbers being off, it was time to call in a pediatric hepatologist.  She was great.  Apparently one issue is that he has received his Hep B vaccine but his blood shows no titers for that.  Of course of numbers can mean Hepatitis and a few other things.  More blood draws, waiting for more tests.  And now a call to immunology to figure out about titers.

Neurology:
A routine EEG showed electrical activity that is suggestive of Epileptiform Encephalpathies.  He had a 24 video-monitored one, and they are still digesting that data.  What this means is unclear at this point.  It could account for certain things, be ancillary information or develop into something.  Previous EEGs dating back to his infancy showed normal activity.  The 24 hour one was done without meds on board and after two weeks of wash out.  It is fair to assume he did not have meds interfering during EEG.  Neurologist is also geneticist.  She observed and found some of same  neurologocial oddities as specialist at Mayo.  Together, with other things, led to genetic testing.  Neurology is not finished with him.  He will have a 12 hour sleep study Friday night.  He gets to move to the sleep hall, but one of his nurses travels with him.

GI
Well, the GI specialist is helping with some life-long challenges Frazer has had and we have not had any progress with since he was a toddler.  She is retesting for celiac's and some other things as well.  We hope to leave with a plan here too.

Psychiatry:
Frazer is not presenting with psychosis at this point.  Voices and hallucinations are not being questioned.  There is something called prodromal schizophrenia.  Frazer may have this.  Medication would be needed for that.  It is similar but does not clinically meet COS.  There is a study for that as well but should he have a genetic syndrome, the symptoms fall under that category.

He may have a psychiatric disorder the has elements of several different disorders making his diagnosis multidimensional not singular.

These area is gray and unclear, and treatment is still important.

Anti-seizure medicine can be anti-psychotic medicine. 

The tangled web Frazer weaves.  He is still happy on his hall.  He still goes to school three hours a day (there are four kids in group and 1 teacher: 2 students).  He loves having his kindle for an hour every night and has watched Frozen every day since he has been here.  We visit daily and try to read with Porter for an hour but often they just watch a movie together.  Playing games is difficult as many of his behaviors are unkind.  He is definitely more aggressive with me and his main nurse.  It is something.

William and I are grateful.  He is getting thorough care and the folks who interact with him truly enjoy him.  He has rec therapy, art therapy, pet therapy, exercise, and school.  He picks his own food off menu -- pasta and mac and cheese every night.  Not saying it is good but he wants it.

We are on the course until the train gets us off at a station in which he can move forward at home with a plan -- a five year and possibly a ten year one.

The Nats

Another great gift of the Children's Inn -- club seats at a Nats game Friday, May 30, 2014.  A kind donor had shared awesome seats.  Off Porter and I went after visiting with Frazer.  Porter had his first Metro ride and went to his first major league baseball game.  Peanuts, sodas, fries -- he saw a few homers and the Nats beat the Rangers.  It was a great night capped off by Will and Houlder arriving about an hour after we got back.

Porter's first Metro ride -- little unsure of at first.

View from the club section.

Necklace bling -- made from a baseball.

Attempt of selfie at game.

Beautiful stadium and night.

Home

Is where I want to be...

Home.  What defines home for each person?  The Taking Head's Naive Medley is an anthem reminding me that the soul is more heart than hearth; the place I abide in communion with those I love and those who love me.

So why not here in Bethesda, Maryland away from my "home?"

Porter misses our summer life -- Southampton, his kitties with whom his Facetimes nightly before he can fall asleep, his friends, his dad but mostly Southampton.  We live all winter awaiting that frigid Monday in May when we plunge in for swim team and our SRA life. This little recreation center provided Houlder the fodder for both his senior speech and his college essay.  It has snuggled its way into the heart of our hearth and we achingly long for the life we have there.  It is like a panacea for all that worries us and overwhelms us.

A good friend religiously collects water from each season freezing it until the next season to drop the previous summer's magic into the new water.  I cried when those photos were posted.

WHAT!

Cause the real deal is that The Children's Inn is spacious and gracious.  Similar to a Ronald McDonald House, the Inn at NIH provides community kitchens, meals, activtities, a teacher, comfortable areas, therapy dog visits, an awesome playground.  The staff is amazingly kind and thoughtful.  In fact we leave shortly for a private tour of the Capitol for guests of the Inn.

Porter and I spend our days here in the Inn doing school work, reading, playing with other kids, cooking, visiting friends nearby, and visiting Frazer.  I also participate in his care management.

Porter has made a great buddy with one of Dell's godmother's sons who lives nearby in Chevy Chase.

There are tons of Kenyon peeps in the area.  I feel support.

Just missing summer.  Trying to embrace the newness of it all and make the transition to our summer home.

One thing that is reassuring is that every day we pass a beautiful monoprint which a good friend, Carlysle Vicenti, had donated:

You can imagine our excitement of seeing this piece the first time.  We even have some acrlyics from this monoprint series.

Home is nearer than we know.

Frazer's home on his wing is a happy existence.  He seems quite content in fact shunning some of our visits which is another source of pain for Porter and me.  He has school, rec therapy, art therapy, about four other kids are on the hall.  He has made his new home fairly easily which is a relief and a heartache.  Porter asked him what he missed about home and he said, "Nothing."  Even Dell missed home when he was at St. James.

But, as this is our home for the next few months, I am confident that Porter and I will find more ways to feel synced to summer; I am glad that Frazer, for now, is at home.

Should you want to send mail:
Susie or Porter Hudgins
C/O The Children's Inn at NIH
7 West Drive
Bethesda, MD 20814-1509

or Frazer can be reached:
Wren Hudgins -- Patient Mail
NIH -- CRC, Hatfield Center
1 SW PCU, MSC 1280
#10 Center Drive
Bethesda MD 20892

We are "Making it up as we go along."

"This Must Be The Place (Naive Melody)"

Home is where I want to be
Pick me up and turn me round
I feel numb - burn with a weak heart
(So I) guess I must be having fun
The less we say about it the better
Make it up as we go along
Feet on the ground
Head in the sky
It's ok I know nothing's wrong . . nothing

Hi yo I got plenty of time
Hi yo you got light in your eyes
And you're standing here beside me
I love the passing of time
Never for money
Always for love
Cover up say goodnight . . . say goodnight

Home - is where I want to be
But I guess I'm already there
I come home she lifted up her wings
Guess that this must be the place
I can't tell one from another
Did I find you, or you find me?
There was a time Before we were born
If someone asks, this where I'll be . . . where I'll be

Hi yo We drift in and out
Hi yo sing into my mouth
Out of all those kinds of people
You got a face with a view
I'm just an animal looking for a home
Share the same space for a minute or two
And you love me till my heart stops
Love me till I'm dead
Eyes that light up, eyes look through you
Cover up the blank spots
Hit me on the head Ah ooh

New Room

Houlder about 3 months old

Almost 19 years, I had this delicious baby boy.  He rarely cried.  He fooled William and I into believing we were good parents.  We had the touch.  He slept which we somehow believed we made happen.  He sang himself awake in the crib, in another room, while we listened to his tunes.

One of the best gifts of parenting is the dismantling factor of smug righteousness.  Having children who did not follow the scrip or our lead barreled down our pride and produced plentiful humble pie which comes without a direction manual.

Each subsequent child provided glimpses of knowing and unknowing what the heck we were doing.  We reminded ourselves that they were all alive, fed, housed, and clothed.  Our expectations expanded to reality -- not Lifetime movie fluff.  We managed each kid and scrambled.  I went from organized and early to perennially late and scattered.   I came across as flaky to those just meeting me; during the unctuous stage of my life, I would have cared. Now, I just hope my shirt is clean and I have everything I am supposed to have.

Dell about 15 months

Dell about 18 months with Max Bunster

Frazer 2 weeks with Grandpa Sid

With Frazer, there has been mystery, quirkiness and joy.  A much longed for soul after three miscarriages, his dramatic arrival at the beginning of Y2K was chaos.  His family has embraced this chaos, guided it and enjoyed him.  We had no clue, but we had love.

And, often, we worried for him.

Most notably Frazer is petite.  He looks like an 8-9 year old.  That size has allowed us to perhaps ignore things that were beyond quirky.  The past two years his friendships slipped away.  He was enraptured more and more in a world he only he knew.   

Frazer at 5 in preschool

Monday, he handled his inpatient status happily.  He has his own room with bathroom.  As as sibling  who has always shared, this is an improvement of some nature.  When Porter and I left that night after a bedtime reading, we were sad.

Yesterday when Porter and I went to spend time with him, Frazer asked us to go.  He was otherwise engaged alone with his mind and a show.

We left respecting his request. Porter and I both had those achy pits that make you want to barf or cry or zone out.  I am still unfolding my emotions.  Essentially this writing is for me.  I can share some of Frazer and some of what we are learning, but I need a place to put my voice.  To hold my fears and gratitude and I hope some laughter and lightness.

Houlder 10, Porter 7 months

My 25th reunion from college is this weekend.  I opted not to go even though I have spent past ten months thinking about it.  My friends are gathering in one of my most favorite places on earth to celebrate and embrace our youth.  It feels lonely, but this is my choice.  I can't shake off this responsibility.  A babysitter cannot be mom.  Hopefully I will not be asked to leave again.

But if so, I will come back to my room and watch my reunion unfold on Facebook.  I am not sure if that is great thing or something for which I should be embarrassed.  It is honest.

Admission -- an announcement

Spring is the season of admissions in the life of a senior in high school.  There are admissions into college, technical school, or  work.  Mostly, in our lives, there has been discussion and Facebook likes of where friends and family friends are heading in the fall for college.  For Houlder, this has been a pleasant and fun time with his admission into Kenyon since December as an Early Decision candidate. 

I studied Latin as a means of improving my SAT scores and thereby increasing my chances of admission into a "good"college.  It was not until 10th grade that I got the chance to study Latin.  The logic of the language raised my GPA as Latin came easily to me, and it made sense of so many of the "exceptions" in English grammar.   But, I am not sure it did much to boost my SATs because the link between the root and its current meaning were not always apparent to me.

Take a word like admission. 

Ad = to + mittere = to send or let go.  To me, to send to or to let go to is a simple translation. 

The first result of a google search of the word admission is the Tina Fey movie about getting into an Ivy with subsequent hits on stories about the intense competition to be admitted into a college.  But, pry deeper into a hardbound Webster or a web dictionary; admission's first definition is a statement acknowledging the truth. 

Telling the truth?  How did to send to or to let go to become to acknowledge a past of lies or misinformation?  Hence my trouble with SAT.

The second definition of a letting into a place, organization or institution seems easier to trace back to its roots. 

Eliminating higher education from the equation, where are places people are admitted?  Exclusive clubs, memberships in to associations based on dues, and the hospital come to mind. 

People are also admitted into studies so that scientists, researchers, and doctors can continue to further define, decode, and hopefully heal the human body and mind.  Maybe they even uncover the Truth.

In an effort to keep our friends and family informed and to hopefully remove stigmas for mental health, Frazer and I are moving to NIH in Bethesda, MD for a few months.  Frazer has been admitted into a 23 year long study exploring Childhood Onset Schizophrenia.  Frazer approves and wants me to blog about this because he does not have the burden of socially imposed shame. 

For now, if you have the time, please watch this 13 minute Ted Talk from the Head of National Institute of Mental Health at NIH.  In it, he explains how medicine and science have reduced mortality in many areas with the exception of mental health, and he mentions a study by Dr. Rapport regarding COS (Childhood Onset Schizophrenia).  This study is the one Frazer has gained admission.

It is the season for admission, graduations and commencements.  We begin.

Chicken or Egg

I find confronting conviction challenging which differs from my enjoyment of healthy opposing opinions.  Refuting base beliefs whether founded on Wheel of Fortune, someone looking into a funny hat, or a homeless man who believes he is three people in one is nearly impossible.   What stimulates  absolute faith that stirs the vitriol in others is not always religious. 

Writer philosophers have wrangled with the messy continuum, to borrow from Heller, The Catch-22. 

I wonder what we know.  How do we know?  Is it cellular?  Molecular? Theta waves? Beta Waves? Sensory? Memory?   Is there a tipping point to borrow from Gladwell or instinct to borrow from Mother Nature?  And what did we know first, did it come first and does first even matter?

If I meet someone who is sure, can I suspend my doubt long enough to believe in their potentiality?

These are my thoughts on the plane, at a stop light, in the middle of the night.

Many people trying to figure it out, to theorize, to order, to profess the way.  Why do I feel as if I know less?

Almost two years ago an unexpected ER visit for Frazer led to the expansion my blog to include health updates on Frazer and then Houlder.  It became a great vehicle to receive wonderful help and kindness from so many.

I struggled to control my rage with my inability to find anyone who could help Houlder.  Every time I thought I had a hold on Frazer and where we were headed, a strong gale blew us on a different path. 

Most people who have so kindly held me up and said that they could not have done it, don't realize that they too would have fought.

We lucked out in Minnesota at the Mayo Clinic.  Houlder and then Frazer received validating and empirical care.  We -- all of us -- realize what a privledge it has been to be able to continue on and try to find a definitive answer.

Something to believe in.

A conviction.

The twist, to pick one thing, means that you are eschewing another.  I tend to expect the sun will come up tomorrow and that a falling tree makes noise even if I don't know conclusively that the sun will rise and hear the tree make noise.

Maybe it is age.  Maybe it is me. 

Maybe.

That's the dilemma.

Or not.

We are visiting Mayo and staying at Ronald McDonald House until next week for check ups, follow ups and some testing. 

Houlder is basically a great poster kid for the PRC treatment he did last year.  Yet, he has had a non-stop headache for over 2 plus years.

Apparently people sometimes just have to live like this.

Frazer has grown 1.25 inches since August which is massive for him and exciting as his thirteenth birthday is a couple of weeks away. 4 feet 4 inches 56 pound --13 year old boy. 

Apparently people sometimes can change their lives.

These doctors know a ton, are curious and explore, and I hear their best protocol and plan but the nagging voice in my head also hears that there is more to know.

I have tried not to be too rigid in thinking about life.  I have tried to embrace all different expressions of ideas.  I have tried to experience what I have not known.

We still have explorations while we are here but most point to a wait and see approach.  An approach in which I accept but rebel.

The past two years have been filled with emotions.  With unknown intuitions and persistence.  With friends and love.  With thoughts magnanimous and those that were not. 

I laugh through the struggles because it holds me closer to those whom I love and keeps my heart more in touch with joy than wallowing in the weeds.  The weeds often have appeal but I don't want to be there.  

Flying out on New Year's Eve

otherwise known as mom's birthday

hot tub boy

bit of temp adjustment

brothers and friends

more Dr. who

My conviction is not in the weeds. 

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.

There is moonight and moss in the trees

When I began driving myself places or was old enough to ride with other teen drivers, a sunshiny day with awesome Southern rock had my long hair loose and my vocals alive.  I remember feeling the world was open, available and possible. Singing out loud, off key but fully enthusiastically, I felt joyful and a sense of divine with the world.  Often in the company of a friend or even alone, I would feel inspired by the weather and music -- a ripeness of hope.

This past Saturday was one of those types of days. 

As I drove Porter and Dell to their activities, my dad stayed at home with Houlder.  William was holed up in the UR library.  I drove with my window down, waiting for that song to beckon me out of the grips of our health conundrum.  I enjoyed my kids, their banter (or bicker) and discovered a love of tee ball and the humor it can provide.  Not quite as funny as damnyouautocorrect.com but as good as mites' diving off the blocks at a swim meet.

So, on I drove expectant for that moment.  Cruising the digital dial hoping to land on that song that might provide a moment of relief and abandon, I was denied. 

It felt so normal.

What we are figuring out is not about me, but it is about how I can mother and advocate and love.  It is not for me to find a break, but my man-child and sweet one certainly have not.

Houlder spent a week that many don't want to experience.

He hurt.

He had pain.

He has started to lose his hair from the stress of the pain.  He is fortunate in that he has plenty of hair.  But, the dermatologist explained that the body redirects its energy to other places when in distress.

The skin on his right foot pinky toe start to turn yellow and peel off.

Very attractive.  No photos.

Immediately, it was thought to be fungal thingy but in further questioning, possibly yeast from the steroids he was given.  The rash showed up the day after he took his first dosages (there are a lot the first day).  Waiting for results but treating with yeast meds and it is clearing.

And, the dermatologist is smart AND really nice.

Last Monday night I had a phone call from pediatric neurologist we had seen at St. Mary's.  He felt Houlder has a neurological problem but that we should try a bigger city with a university hospital that has a multi-discipline approach.

What's the expression?  Punt?

He did not have any recommendations. 

He said that the two other radiologists did not find the same thing the first guy did who did call William back to say that he did not know what it was and did not know what to suggest other than counseling.

Hey, this health care is the best in the world.  We are feeling it here. 

I have an appointment at a headache clinic in Bethesda the end of the month from a friend's suggestion.

We still have not heard form UVA.

We look at more places.

We wait for pediatrician to return from vacation.

Frazer met with neurologist who spent a fair amount of time examining.  Learned he cannot heel walk or cannot walk toe to heel.

Okay, he has managed 11 years.

She felt a need for spinal and head mri as the pediatric neurosurgeon did and got it moved up to this Thursday.

Once he has that, he has an appointment with neurosurgeon in afternoon.  I am taking Houlder along as well.  Our ped. has sent Houlder's file along to this guy.  Hopefully, he can glance at Houlder as well.

Assuming we don't snag yet another diagnosis for sweet Frazer.

Frazer's neurologist was curious about the virus that triggered the pericarditis.  I mentioned Houlder.  She asked all these questions not knowing one of her partners had passed on us.

Not sure what to do.  Explore with her.  Just not sure.

My brain rumbles and creaks with all these thoughts, ideas folks have shared from diets to poisonings to allergies.  I look at places to go, try to manage kindergarten life, selecting classes for Dell for ninth grade, figuring out what Frazer has to learn in order to pass the test -- what?  Am I saying that?  In order to pass the test for fourth grade?  Yes, I am. 

William is studying every chance he can for this CFA thing.  Our timing is certainly not ideal, but sometimes you just have to plug away.

The meals have been awesome, the calls appreciated, the emails and FB's read but not all responded to, the laundry continues.

Sunday after church as I hurried home with Dell and Frazer, my church buddies, the weather was overcast but still worthy of windows down.  I wanted to get home because Houlder had a friend coming to help him with math.  Trying one problem at a time.  He is still trying to do work from before March's spring break -- two months ago.

And, then serendipitously I switched radio channels.  An anthem.   The harmony.  A belt out your troubles song with good guitar picking and liveliness.  A live recording.  I turned up the volume and sang out. 

Dell asked to turn it down.

I said, "Nope." 

Singing off key.

With joy.

For hope.

For ideas.

Four my boys.

http://www.youtube.com/watch?v=knbqBAuEphw&feature=fvwrel

Quickie

Happy Easter!

Quick update:
Houlder:
Wednesday

• released from hospital, pain still horrendous

Thursday

• One of medicines made Houlder throw up.  Afterward he felt better in that his head cleared.  Houlder decided that he was tired of meds making him foggy -- stopped everything except in absolute agony.
• Thursday phone from our pediatrician telling us there was an unusual finding in spinal mri.  Had we heard from doctor -- no.  Radiologist is a Collegiate dad whose child is friends with Houlder.  Nice connection.  
• Our pediatrician trying to get Houlder into headache clinic at UVA.  Anyone know Dr. Rust?

Friday 

• Acupuncture which he mentioned in his blogging debut. 
• William goes to collect spinal mri disk and goes to pediatric neurologist's office to pick up other disks.  Doctor talks to him about spinal for 40 minutes.  He wants to run a test that he has never run and needs to consult neurosurgeon.  Radiologist is consulting with head of radiology on what he saw.  There is something off but not in an easily classifiable way.   
• Our pediatrician has started sending Houlder's case out to be studied wherever folks are interested in studying this. 

Saturday and Sunday

• Pediatrician calls again to check in with me.  He still has not heard from pediatric neurologist.   Our doctor is going on vacation but has sent Houlder's file to guy at UVA and clinic is supposed to call.  He has sent file onto guy William and I met on Thursday for Frazer.  

Frazer:
Thursday

• Met chief of pediatric neurosurgery about the chiari malformation.  
• The CT scan from Frazer in October 2000 shows the chiari.  CT's are not the typical way that one views this situation.  
• This guy did not feel Frazer's mri's offered the optimal view of the chiari, the ability to asses the size, and his cerebospinal fluid.  He ordered another MRI and a spinal mri to check on possible tethered cord and any other condition that sometimes coexists with the chiari.
• Discussed sedation the mri.  We mentioned the need to do this asap so that we could move forward with heart repair.  He said that he would mention it to pediatric cardiac surgeon that night
• Emailed fellow about scheduling Frazer's ASD repair (hole in the heart) and mri. 

Friday

• Greeted with email from ped. card. surg. that they needed to do MRI first and they were trying to move it along.  We are certainly impressed with their willingness to communicate and the sped.  Gratitude.

As of today, we are waiting to hear from ped. neur. surg. about date of mri for Fraz.  Tomorrow I will call ped neuro. for Houlder to find out the status of what is the next step.  Will also run Houlder's films to ped.neuro. surg. to look at the rest of Houlder's case.

Make it up as we go along

"The less we know about it the better
We make it up as we go along" Talking Heads

This song has anthem-like qualities for me.  Love, the unknown and home.  The journey of life.

But, the ability to keep grasping "to make it up as we go along" is fading.  My willingness to float in a sea of uncertainty has become an anathema to me.    While I should be singing Gloria Gaynor's 'I will survive," I am feeling more like Eeyore:

"It's snowing still," said Eeyore gloomily.

"So it is."

"And freezing."

"Is it?"

"Yes," said Eeyore. "However," he said, brightening up a little, "we haven't had an earthquake lately." AA Milne

The earthquake feels right around the corner.

Houlder finished up the MRI of his spine last night at 7:50pm.  I had inquired numerous times throughout the day if we would be discharged after the test.  It was all unknown.  Back in the room at 8pm, Houlder's pain edging back into too much discomfort, the doctor, who had been there all day but not come in dropped by, came to discharge us.  At 8:30pm.  When she asked Houlder if he was ready to leave, he said no.  She then said "It's not your decision; it's your mother's decision."

Parenting 101.  Don't ask a yes or no question if there is an answer you will refuse to accept.

I understood her point but the willingness to filter and ignore was slipping.  I said, "But do I have a choice?"  Good manners kicked in and I mentioned to Houlder how nice it would be to sleep in his own bed.

I was able to secure pain management to get us through today and maybe tomorrow and felt we needed to go.  Home was where I wanted to be.

Surprised to be discharged in the dark schelping bags to the parking deck alone but grateful as well.

I am going to started pulses, temps and blood pressure tomorrow every 4 hours just like at hospital so that I can manage everything.  I was an English and sociology major, but here is my plug for liberal arts colleges.  I think this info might help, and I believe I can do it.  It's that liberal arts education sneaking in tripping the think button.  My step father taught me how to do all these a few weeks ago, and it's game time.  Stepping way out of the comfort zone into health care management.  No Joyce or Milton here.  No Chopin or Morrison.  No lyrical way to compose, numbers, data, measurements. Just the facts reported please.

An added doozey yesterday came for Frazer.  The endocrine called and told us that Frazer is producing growth hormone.  I frankly am surprised.  He thinks he should be on the hormones anyway.  We are trying to figure out what that means with the chiari.  William and I are still trying to figure this one out.  There are health risks when you give the hormone if the body is producing yet.  Again, research, question, explore.

"Make it up as we go along."

Frazer meets the neurosurgeon today.  I was able to score his CT scan from when he was 10 months old at hospital (2000) while Houlder was in his room.  They were in a bin to be destroyed.  Cannot complain about that luck.  Small Pooh moment.

I have been up since giving Houlder meds at 2:45 trying to remember that this may be a another starting point.  In fact that is all I believe.  It is some information.  For those who think we have abandoned the hunting and gathering society, I contend this mother is gathering tomes of info, test results and the lot.  I found a cool Rx app for the iphone to program the meds and an even cooler one  at the app store for macs to keep track of medical records.  I have lengthy notes but felt there was a better more concise way to present the info.  I hope I have stumbled onto the power of the apple.

Houlder will need to trudge with me to these appointments as I don't think he can be left home alone.  William's parents are coming up for Grandparents Day at Collegiate and I am hoping will feed Porter lunch.  Frazer will head to neurosurgeon with us.  Dell has snagged a ride home with our neighbor.

Last night when Houlder and I got home about 9:30, we feasted.  Several folks had shared their love and kindness, and we had delicious and ample pickings.  We are so thankful.

I am hoping Friday to hop like a bunny to find some treats.

This Must Be the Place (Naive Melody) Talking Heads
http://www.youtube.com/watch?v=Cqg_ZGcuybs