Really.

Someone recently said how difficult this week has been and I laughed...then cried.  It really has been an incredibly difficult week, but hey, the year hasn't exactly been a picnic.  I always try to focus on the blessings, but the challenges really are overshadowing the blessings right now.  I know they don't but I am straining to see the sunshine.

In the last six weeks, I lost my dad with whom my relationship was strained, Will was in the hospital for a week, my 4 months of crutches ended in surgery, Will was just readmitted to MCV, and that night the incision of my foot reopened and I ended up in the ER of the same hospital as Will. 

I know that we will get through this.  I know that while Will is really ill, I will get to take my child home and he will talk to me.  A lot of parents don't have that opportunity.  Does that make today easier?  Not really.  I have other children whom I don't get to see, a husband who is stressed taking care of those children (with Erlene's help) and trying to work, a son who is angry that he is once again in the hospital when he really just wants to go home, and I am dealing with life in a hospital while still non-weight bearing and on crutches. 

I am thankful for the fact that my family does have meals in the fridge thanks to the generosity of friends.  That does make Billy's life more manageable and the nutrition of my children a little safer in my absence.  I am thankful that a wonderful doc is on service and Dr T is not on vacation.  I am thankful for insurance. 

But today.  It is just raining in my world and I would love to see some sunshine.

It's an All New Ride, Man!

Seven weeks ago I fractured a bone in the ball of my foot.  It takes skill to fracture this bone...and apparently it takes skill that I lack to mend it.  So, it's been seven weeks of get-to-know-your-crutches really well.  Seven weeks of crutching around Costco, swim meets, hospitals, home, and outdoor concert venues...and we have no idea when the close proximity to my tall, skinny, supportive friends will end. 

So this week at swim practice, we were decorating flip flops with team colors, when one of the moms laughed and said we should decorate my crutches.  Someone piped up and said, "They make crutch skins!" which set me off on a google search just because I was curious. 

What I found were gel crutch handles.  Skins are cool, but gel crutch handles are, well, amazing!  Those major callouses on my hand and the sore palms at the end of the day may actually have a solution?  No way! 

So I put them in my cart and saw the "crutch tips" link.  No, I don't need the snow and ice tips...it's been one of the hottest summers on record.  But it's so cool that they exist!  I found these spiffy pivoting ones.  No way was I gonna order them, but I did check mine for wear...just curious how many  miles I've actually put on them, and ...  Yikes.  Um, yeah, mine are a little cracked and...thin....like you can feel the metal through the bottom.  So, I put those racing-striped, pivoting tips in my cart and checked out.

And then I realized how incredibly geeky I have become.  I just got excited over pivoting, racing-striped crutch tips and gel hand grips.  These crutches have been with me for way too long.  I'm gonna get a brand new ride next week...kinda...and I'm like a kid at Christmas.  This is just so cool!

I'd love to order crutch skins, just because they are fun, but the practicality vs expense just doesn't seem...practical.  But new handles that ease fatigue and pain?  I'm all over that.

The broken appendage has definitely slowed me down and made me appreciate the ability to ambulate about my kitchen...or stand and make a salad. (You stand on one leg for forty-five minutes making dinner while trying to balance because you need to use your hands to cut something or move a pot but you need your hands to actually hold onto your crutches...)  But it has also made me appreciate those who have sacrificed so much for our country.  I was at a concert last week when an amputee with a military cut strolled in on his  crutches (which had a really cool skin on them!)...and one leg. While my bone is not necessarily healing at mach speed, and I may yet lose that bone due to an interruption in the blood supply to it, I'll keep my foot and will likely get to run again...eventually.  But this guy's life is forever changed...as well as his family's.  My family has been inconvenienced by my fracture, but it's temporary.  His is permanent.

So, it's all about perspective.  Yes, I'm geeked about my new ride, and I'm so glad that the technology to create snow and ice tips for crutches exists...but I'm more grateful for the sacrifice this young man made for me and my family so that I can have the freedom to be geeked over my soon-to-be-new ride.

It was a Coleman Kinda Day

The stuff that happens in the Coleman world really defies explanation.  When our friends have a "Coleman Day" we really want to apologize cause sometimes it feels like our name ranks right up there with Murphy.

A couple of weeks ago, Billy was working on the Coleman bus, which is really a Ford 15 passenger van, but one of the lug nuts was stuck.  So without thinking, he pulled on the lug wrench...which promptly popped off and hit him just above the eye.  I was in the garden and heard the clatter of the wrench hitting the concrete.  When I asked him if he was ok, he said, "I'll let ya know in a minute."  Billy is stoic.  Really stoic.  Anything more than'"I am fine." can range from ...he is fine...to wow, he just amputated a limb.  So I decided that running down to help him might be wise.

Which was my undoing.

Billy's eyebrow swelled immediately but with ice, he recovered nicely...not even a black eye.

My left foot, on the other hand, swelled later that night, and almost two weeks later, is still swollen due to a sesamoid fracture.  What is a sesamoid one asks.  Well, there are two little bones in the ball of your foot called sesamoids.  When my orthopedic looked at me and asked how in the world I fractured it, I laughed and said, "Um, skill?"  So, my foot is bandaged and in a fashionable (not!) boot, and I am on crutches, non-weight bearing for 4-6 weeks.  That upper body workout I keep trying to fit in?  Well...let me tell ya...I get it regularly now.

Did I mention yet that I am now in Cincinnati?  Yep.  I break this bone, end up on crutches, and less than a week later I am scheduled to fly with Will to Cincinnati for an MRI and two doctor appointments.  Our Angel Flight pilots were fabulous and all agreed to find some way of getting me in the plane.  There goes the pride.

We are being totally spoiled by Becky R, are resting, and are seeing friends we have not seen in months.  We even got to worship this morning in our "other" church, Faith Presbyterian.  Will has had his MRI and hopefully we will get the results on Monday when we see the neurosurgeon.  Wednesday we see the plastic surgeon, and Thursday we fly home.  I miss my family dearly, but am grateful for my Ohio family.  I cannot imagine managing all of this without them. 

Absence Makes the Heart Grow Fonder

I am sitting here in MCV yet again, waiting for William.  His port has developed issues over the last couple of weeks.  He was scheduled for a port study this morning, but after the issues of the weekend, it is being replaced...and it is taking forever because the previous port was deeply installed and is taking a while to get out.

So while I am actually sitting still, I figured I would finally log onto the blog and see about updating it.  And then I realized how long it has been since that was actually done.  So, how about the short version?  Is there such a thing?

Will was back in the hospital in April in what was one of the hardest admissions we have ever experienced.  It was really the first time that an attending just would not even try to grasp the situation which resulted in Will's care being less than what was needed.  The nutrition department decided to eliminate almost everything from his menu due to his food allergies, which resulted in their providing significantly fewer calories than he needed, which meant that I was buying his food and bringing it to him.  Needless to say, by the time we got home, my temper was in rare form and I was ready to shake some trees to ensure that this never happened again.  Dr. T graciously heard my complaints and is managing the situation for which I am grateful.

The brain injury is creating fewer issues in my life, but the night vision issues and fatigue and occasional "what is that word?" seem to still exist.  I am grateful for improvement but will be very happy to have this fully resolved.  I am once again cleared to run, but trying to figure out how to fit that back into our lives seems challenging.

Caroline currently is not a candidate for surgery.  While the mito question still looms, the surgeon in Ohio believes that her brain stem is fine and will not require intervention.  Good news is rare in our world, so it was really hard to believe, but we are indeed grateful for it!

The best news...of course is saved for last.  William "Cole" Winyard arrived Saturday early morning.  Caty had just sent the message that she thought labor was a myth, but alas, she learned otherwise.  :)  While pregnancy can feel like it lasts forever, it really doesn't...and at the end, you are blessed with a beautiful son. Cole weighed in at a lovely 8 lb 2 oz and appears healthy and happy.  Nana (I) certainly enjoy(s) holding him! 

So, Will and his new port are about to return to this frigid room we call recovery. I will try to be more faithful in the updates.  Life has just seemed so challenging in the last few months...

UMDF Central VA

So, for the last few years, I have heard about, chatted online with, and read about other people with mito...but we almost never meet anyone face to face who lives a life similar to ours...someone whose life revolves around IV fluids, doctor appointments, medications, insurance companies, and medical bills.  Rising gas prices affect us not because we may have to cut soccer from our schedule, but because we have to figure out how to cut something from our budget because the doctor appointments can't be cut and the medical bills still need to be paid.

Tonight, we got to meet them...a mom with whom I have been facebook friends but have never met, someone who reads the blog and was was so encouraging about how it helped her, and the mom who organized the new UMDF chapter who also helped pave the way with some of the local physicians.  There was a room full of parents who truly understand...and it was so encouraging to see that we are not alone.

I often contemplate a post to the blog, but I fear it is just another repeat of, "This is hard, but God is faithful." and that people won't want to read it anymore, so I don't write.  It is hard.  It's painful to watch your child sitting in a chair looking awful, and other than adding in fluids, there's just not much you can do about it.  You fear the worst, pray for the best, and fight with all your might against an invisible enemy.  But to know that putting it in words helped even one mom was such an encouragement.

So thank you, Judi, for having a vision for a Central Virginia UMDF chapter.  I know the time needed to get the job done was time that you didn't sleep.  Thanks to the parents who showed up.  And thank you, Dr. Cohen, for willingly dedicating your life to caring for and working toward a cure...or at least help...for those with mito.  You make a huge difference in our lives.

Living with this disease is, to say the least, unimaginably difficult.  Knowing that there were others out there is helpful...you can post questions and get answers and know that you aren't alone.  But actually sitting in the same room with others who understand?  There are not words...

Stubborn, maybe. Hard-headed...NOT

When we do something, we do it right.  We Colemans are not halfway kind of people.  We didn't set out to be, "If you are gonna go...go BIG," but we apparently do it without realizing...it is as easy as breathing.

So two weeks ago, while I was talking to the pharmacist with Will's IV company and rescuing my granddaughter from the wrong side of the bed where she was stuck, I managed to slam my head into the corner of the dormer in Caroline's room.  Next thing I know, I am face down on the trundle bed, still talking to Lonnie, Chloe is still screaming, and I am trying to sound as if everything is perfectly fine while discussing how many bags of fluid Will will need this week.  Here, I am in intense pain and can't hear for the screams, but it is all fine.  Really.

Well, I ended the phone call, rescued the child, and wrote some ridiculous facebook status about my life being a country song.  Went through the day with a sore spot on my head and a developing headache, but what do you expect when you slam your head into a dormer corner?

So I drove the kids into town and waited for them to finish their lessons while the headache worsened and I was getting really tired.  Grandkids were napping in the van, so I sat quietly and waited.  Having a boatload of children will make one tired, so again, no alarm bells.

But on the drive home...alarm bells started clanging really loudly over the ringing in my ears and the dizziness and nausea that were quickly setting in.  I pulled over, texted that info to Billy, then drove home.  The rest of the night is a bit of a blur.  I could type (uses a different pathway of the brain) but speech was getting challenging.  When Will asked me a question and garnered a blank stare, he texted Billy to find out when Billy was taking me to the hospital...where I could not remember the year (Um, I know it is in the 2010's...I think.), my phone number (which I have had for at least 15 years), or my social security number (which I have had for a lot MORE than 15 years).  Hmmm...oh, and just getting to the ER involved turns and curves which required me to laboriously inform Billy that if..he...did... not...take...them...more...slowly, ...I...was...going...to...throw...up!

The CT was clear, there was no brain bleed.  They gave me pain medication, I requested the wonder drug Zofran for the nausea, and they sent me home to rest quietly.  Which I then proceeded to do for the next...week...and still was not right.  So back to the doc we went...who then sent me for an MRI...which then set off this weird shaking, staccato speech, rapid blinking event that landed me back in...the ER...on my birthday.  Really.  I know how to have fun...on my birthday...and this was...NOT ..it.

So here we are...two weeks later, and I am better but still not...back to normal.  I can almost consistently talk in complete sentences that don't take five minutes to deliver. I still cannot multi-task well, and lots of noise and bright light are still painful.  That buzzing in the ears is annoying, but it stays to a low roar until I get tired, which is when most of the symptoms increase in intensity.  Driving is still an issue, especially at night with the lights. You don't realize how MUCH you are multi-tasking while driving until you can't multi-task. 

So I sleep...a lot...and rest...a lot...and have friends who handle the driving...a lot.  Fortunately, we have a respite home health nurse who has been helpful with William who has been atypically cooperative by being moderately stable during this whole event.  We don't know how long my recovery will be...we were essentially told a week to a year....we are just hoping that it is closer to a week (which I realize has already passsed...a couple of times!).  I have a race in 6 weeks...it would be kinda nice to run it...actually...it would just be nice to  this run year...and not IN a year.

Not What We Expected

So here we are...still in the hospital for what I thought was going to be a fairly quick, routine admission.  I thought Will needed continual fluids with carnitine every 8 hours for a few days, then he would be back at baseline, and all will be well.  That isn't quite the way it worked out.

This admission has been anything but routine.  Not only is Dr. T unavailable, but the team of physicians that were treating Will were essentially unaware of the challenge that he can provide.  (Just ask his nurses... "May I take your temperature?"  "No, it is mine and you can't have it!")  For some crazy reason they really do like him, and they have treated him for long enough that they have a healthy respect for his medical condition and how fast his status can change...especially around 4 every morning.  The residents were skeptical, but their learning curve was fast and steep.

So despite all of the early challenges, things were finally settling in.  We had consults consulting and running tests, and fluids galore entering his veins.  His numbers were looking better...until 4 am...when he tanked...every night. 

Well, interestingly, he didn't tank last night...but that was because of a test that was being run that basically gave a jolt to his system to see how his adrenal gland would respond.  The short answer is...it didn't.  His initial labwork showed that his cortisol level was extremely low, and after the jolt they administered, it should have skyrocketed, but instead, it barely rose to the low side of normal. 

Dr. K, standing in for Dr T this week, was standing beside the endocrinologist when he stated that news, and she looked at me and said, "Not at all what I expected."  Well, apparently that makes three of us.  But upon reading about it, it makes absolute sense.  Will has been receiving more and more infusions but he is responding for shorter periods of time.  Something had changed, but I didn't know what.  I mistakenly thought that he had just fallen too far off baseline and needed time on continual fluids to give his body a break and return to "normal".  Not happening.

There is no cure here.  Man, but that sounds famililar.  And the question that everyone is asking is...what happened.  Mito happened.  The strain of the mito not working sufficiently has affected yet another system.  Progression happened.  We know that mito is progressive.  We know that things can change on a dime with it.  But when a doctor walks in and tells you that you have essentially lost yet more ground to this heinous diesease, then it hits like a punch in the stomach. 

It took a while for the news to really set in today.  I heard it, but I didn't really process it.  Then when things got calmer, I started reading and talking to the nurses.  Then it hit me.  Wow.  This does really change things.  This takes his fluid management to new levels.  When he gets sick, we won't be able to keep him home.  He will need to be in the hospital so his levels can be supported appropriately.  That means more hospital time...more family strain...more grief...and honestly, more work.  Tossing this lovely little variable into a fragile system really is incomprehensible to me at the moment.

What does this mean for today?  It means I am going to go to sleep soon so when his alarms start beeping at 430 I won't be cross eyed.  It means we will be here until the steroid we are now giving him reaches a level that helps stabilize his blood pressure.  That means we may go home tomorrow (Wednesday), and we may not.  It means we get to add a specialist and a medication to his current (what I thought was full!) arsenal of specialists and medications.  It means that caring for Will just got a little more...challenging...and not in a good way.

God is still on His throne, and the sun is still shining way above the clouds.  But, here, at the moment, it is gloomy and dark and stormy.

Middle of the Night Musings

It is 430 am.  I am sitting on my "bed" in the PCU  watching Will sleep while keeping an eye on his monitor.  I have had only 3 hours of sleep a night since our arrival here on Thursday, so why I cannot return to sleep is a bit of an enigma.

I sit here, watching his blood pressure and heart rate drop yet again and my heart is heavy.  While we are in the hospital, Will is fully loaded up on fluids and carnitine.  He basically is returned to his best possible physical condition.  Most people leave the hospital and need a period of recovery time.  But Will is at his best.  So, if at his very best, his vitals drop so significantly, then what are they doing at home while he sleeps when his vitals are typically lower?

We have had endocrinology and cardiology consults during this admission.  More testing will be completed today.  But I doubt they will find much of anything.  Between the mito and the brain stem issues, his autonomic nervous system is not going to function properly.  This is all likely just more of the same...a progressive disease complicated by a brain stem that is apparently not recovering from being compressed. 

The doctor is tossing around options, like sending Will home with continual IV's.  Lots of people live their lives always attached to their line. But Will has already stated that if living a more active life involved an IV every day, then he would sit on the sofa. As his mom, that was a difficult statement to hear.  I can only imagine what he will say if/when he is told that continual IV therapy is the next step for every day life...not just an active life. 

There are not words to express the emotions that flit through me during the middle of the night musings.  I listen to the beeps and alarms and realize that they are alarming for Will.  His bp is low.  His heart rate is low.  I fear what may happen if they drop too much lower.  I know that Will is in God's hands and that He has appointed a time for Will to be with us.  But I want to scream and cry and I want to pretend that he is just sick today and after this admission things will be better.  I want the doctors to find a reason for the precipitous drops in vital signs.  But I really do know that this is just more of the same.  I just pray that I have the strength to hear and Will has the strength to handle whatever news they give us...and that our family can somehow find the strength and desire to love and support one another in the midst of it all.

The Inevitable

Not sure why I delude myself into believing that I can postpone or avoid the inevitable, but as I sit in Will's room at MCV, I have lots of time to contemplate it.  Lots.  Of.  Time.

I have this incurable need to make everyone happy, and for me to say that Will needs to be admitted means that pretty much everyone in my household is less than thrilled.  Yes, they love Will and want what is best for him, but it makes life hard all the way around.  Billy is at work fielding issues from home.  Erlene has an extremely busy week yet is sacrificing her time to help with my littles who would like their mom home.  Will, of course, would like to be anywhere but the hospital, and the older boys get to fend for themselves or care for younger siblings which they have had to do way too often.  But, there are times when the inevitable has to happen and so here we are.

Dr. T is out of town, so we are pretty much being managed from a distance through a doctor that doesn't understand (and who apparently did not read his chart before entering the room) which makes life...challenging.  We were put in a real room (Dr. T is gone, so no one realizes that he is supposed to be in a monitored bed...but since we have walls, a door, and a window, we are not complaining...too much) but unfortunately, the nursing staff is not familiar with us, with Will's unique challenges, nor are they working very hard at understanding.  Combined with their inability to meet his dietary needs, this has become a really frustrating experience. 

It is so funny how we grow so displeased with what we have...and want something different.  We wanted a room, a real room.  Well, we got that, but it is at the sacrifice of better care for William.  So what we wanted wasn't necessarily what was best for us.  Hmmmm....

That being said...while it has been an experience fraught with frustration with residents (really?  We have previously had issues, but they have been resolveable.  Not this time!) and less than stellar monitoring of his condition, we are where we need to be.  He is on fluids around the clock, carnitine every 8 hours by IV, and he is back on his meds.    He was in really rough shape this morning when his bp, heart rate, and body temp all plummeted, but he is slowly coming back up to levels that aren't sending the nurses to the phone in a panic. 

How long will we be here?  No clue.  I wish we had better information, but we don't.  I miss Dr. T and her infintely vast knowledge of and care for Will.  :(  I am thankful for Abigail and Chris willingly staying with the kids and grandkids yesterday while Will and I headed to the hospital.  I am thankful for insurance that allows us to be here (despite now officially meeting that  insane deductible in one fell swoop!).  And I am thankful that Dr T is a phone call away.  I just wish all of this weren't necessary.

Remember Me?

Yes, it has been a while.  I like to think it's because I've been incredibly busy, which I have, but a good part of it is that I have to actually sit and contemplate what to say, and there are times where dwelling on the reality is just...too hard.  You can make it through the day by taking it minute by minute, but if you sit down and dwell on the full reality it's all just overwhelming.

Will attended a friend's birthday party in December.  It was cold, and the party centered around a full blown airsoft battle, and Will really wanted to go.  So, his brothers helped ensure he had sufficient gear, he spent the afternoon running through the woods shooting his buddies, and he had a blast.  One of the moms asked if Will was going to handle this ok, and I shrugged and said, "He'll be sick in two days, but this is the most fun he's had in ages."  It was also the most activity he had had in ages.  He has been in physical therapy for months, but Will was challenging his body in ways it hadn't been challenged since his Make-A-Wish trip.

Two days later...he was sick.  When he gets sick, he gets really sick.  And he crashes.  A lot. The next two weeks became a daily battle to keep him out of MCV while knowing it's really what he needed...but he kept looking at me and stating that he wants to be home for Christmas.  Can you blame him?  I just can't.  So we gave lots of IV fluids and prayed and gave even more IV fluids and prayed some more.

And he has been really difficult to stabilize since that time.  We keep infusing more fluids, and he just keeps crashing.  I talked with his physical therapist today and he recommended that I call Dr. T tomorrow.  The question is...do we put him in the hospital for a few days to give him a boost that will hopefully get him back to baseline, or do we just keep doing what we are doing?  What is the definition of stupidity?  To keep doing the same thing expecting a different result?  That's not working for me so well...When he gets 5 IV's a week, which we've been doing for a few weeks, then maybe we need an alternative solution?

So tomorrow I'll be calling the amazing Dr. T and seeing if she has any pearls of wisdom.

As for the lovely Miss Caroline...well, I'd like to give you answers.  But I don't have any to give.  She clinically looks like a candidate for surgery, but the neurosurgeon here states that her images don't support that conclusion.  We do have an appointment in Cinci in May with Will's neurosurgeon, so we'll see what he has to say.  She is currently at a sleep study to determine if sleep apnea is an issue.  It would provide another piece to the puzzle of how well her brain stem is working...Stay tuned for those results...I may actually blog them before June.  :)

If you have time and want to see what Chris is up to...check out http://candidcameraphotography.blogspot.com/2011/12/smoke-photography-next-up-how-to-take.html or http://www.wix.com/cmc451/candidcamera/main-page#!__main-page/about.  He's done some amazing things with his new camera...

Summer Draws to a Close

Labor Day is the traditional end of summer...and it has been a summer.  We've traveled to Florida and the Outer Banks, have had three children break bones, had an earthquake and a hurricane. The younger children participated on a swim team for the first time ever and I signed up for my second half marathon.  It was busy, hectic, and insane (which seems redundant unless you actually live through it!  Then it makes sense!) season, but as it draws to a close, we can look back and say that I'm so grateful that we survived it all and enjoyed most of it.  The kids experienced snorkeling and kayaking and restaurants every night for a week but also learned that they could do more than they thought they could when asked to swim one more lap when they were really tired.  There were no excuses...not even for the drama queen with the bright green cast on her arm.  :)

This afternoon, while I should have been reading my developmental psychology textbook, I was instead catching up on my friend's blog, Deo Volente.  http://eightbawl.blogspot.com/  She had posted about homeschooling and the fact that she wasn't looking forward to it, but she believed that it was the right thing to do.  So often, especially in the home schooling realm, we hear the excitement and the thrill of starting the new year, but how often do we hear that it's hard work, exhausting, and can actually be insanely monotonous.  Then there's the overwhelm you feel that the laundry is just piling up because you really need to read, The Big Thicket to your kids and this small group of little, or not so little, people will soon be a rioting mob if someone doesn't start dinner and soon! 

So here I sit at my desk tonight pondering the new school year.  Andrew is now at the local community college, and Chris will be taking one class there as well.  That leaves Chris's other subjects, William, and the three youngest.  The current plan is for me to teach Chris and Will while Billy alters his work schedule so he can handle the younger three.


I have been receiving text messages and emails asking if things here are ok because the blog hasn't been updated in quite a while.  Will is doing ok...stably unstable is my favorite term.  He has a narrow margin so he gets sick very easily and very quickly.  He has begged to not go to the hospital through two illnesses this summer...I gave in and did not take him and regretted it both times because his recovery was so much more difficult and prolonged.  I won't make that choice again. 

Caroline has lost weight which is a fairly large concern.  She is supposed to drink a Pediasure every day (which she hates and it is insanely expensive!) and a milkshake (which she obviously does not mind at all!).  The hope is that the dense calories will help her recover some of the weight she lost and help her grow.  Her initial MRI was inconclusive and difficult to read, so a second was performed.  We are still waiting on the results of that one.   I am mailing the disc to Dr. C in Cinci so he can evaluate it.

So as fall looms, I look at the calendar and wonder how the next few months will actually look.  I have trepidation and concern but I am also grateful that I have a sovereign God who knows all that is happening and is at work within my family.

Just Keep Swimming...

I have actually tried to update the blog since we got home, but just as I hit the "Publish Post" button, my computer hiccuped and it disappeared.  That happened at least twice, so, the slow learner that I am, I will click that little save button a few times as I type so maybe, just maybe, this post will actually make it to the cyber world.  :)

The trip home was fairly smooth.  We stood in line in Miami waiting to check our bags and our cooler of remaining IV supplies.  I was armed with letters from Dr. T and documentation from the IV company, but we did not need any of it.   We did realize that our seat assignments for the second leg of the flight had each of us with a window seat...which means that we were scattered throughout the plane, and no two of us were sitting together.  That's manageable for Andrew and Chris and maybe even Will, but for the littles?  Um, I don't think so. 

I kind of expected Miami security to be a challenge...but it really wasn't.  It took forever, and they scanned my carry on three times.  The whole stethoscope and bp cuff  thing drove them nuts.  Will of course had to be patted down since he was on an IV, but the agent was fabulous.  He chatted with Will the whole time and basically explained what he was doing, but he distracted Will with conversation.  When he finished and I finally gathered all of our stuff, he gently shook my hand and quietly whispered that he wished us well and that Will was a cool kid.  He did not have to be so gracious with Will, but he was.  And Ben and Caroline were both teasingly asked for their driver's licenses by TSA agents, so they thought the whole process was hilarious.

We grabbed lunch, flew from Miami to Atlanta, and arrived in Atlanta early.  But we sat on the plane.  And were detoured to a different gate.  And we sat on the plane.  And when we finally arrived at the new gate, it was closer to our next gate, but the hour we were supposed to be laid over was disappearing rapidly.  Billy was toward the front of the plane, so he headed to the new gate to try to get better seating assignments for us and the littles.  Caroline would be okay sitting next to a stranger, but the stranger might be ready to mutiny by the time his ear has been talked off and he finally arrived in Richmond...

Those of us in the very back of the plane finally disembarked and raced to the next gate...where Billy was still waiting for an agent to appear.  He then headed to Starbucks for me (cold, caffeinated, and caloric were the requirements) while I stood in line to manage the seating issues.  For the first time in all four flights...we ended up together.  Literally.  She maneuvered us to the very back of the plane where we had all of one row and the three seats behind.

The flights were otherwise unremarkable, and we safely arrived in Richmond where we were met by the same limo driver.  The drive home was slow due to traffic, but he regaled us with stories of his other job in law enforcement.  I asked the kids what their favorite activities were...Will answered snorkeling, Billy loved kayaking, and Caroline loved swimming.  Andrew, of course, has a need for speed and totally loved the Wave Runners, while Chris was still complaining that I was trying to dump him off of my Wave Runner.   Everyone enjoyed the trip, which was a blessing of immense proportions.

Will did, unfortunately, become ill not long after we arrived home, as did Caroline, so we have spent the last two weeks trying to get him back to baseline.  Tonight, he is sick again, so tomorrow (Thursday) we will either be at MCV or back at the pediatrician. He technically should have been in the hospital when he initially got sick, but he begged me to not take him.  If I had, he probably would have recovered much faster, but I understand his not wanting to be there.  But soon we won't have that option; he is really struggling.

So here's the rundown on all of our warped Coleman fun:

We had a blast in Florida.  We came home.  Will got sick.  Billy got sick.  Caroline's gut decided to not function, so we had to deal with that.   Caroline broke her arm falling off her bike.  Caroline caught a stomach virus.  Will is still sick...and now on his second antibiotic.  Will is sick...still...and may need IV antibiotics and a stay in our favorite suite at MCV.  Oh, and Ben broke his toe at a swim meet.   We Colemans know how to entertain the medical community!  We really should have an emergency department room dedicated to us. 

We appreciate the lovely thoughts and well wishes as we headed to Florida, and we are grateful that the trip went as smoothly as it did.  We are glad to be home, and are grateful that if Will did have to become ill, at least it was at home and not on the trip.  We are supposed to head to the beach on Friday, which we hopefully will be able to still do.  We'll know tomorrow...

Day 4...Kayaking, Wave Runners, Swimming...and Key West

We are so gonna need a few days to recover from this trip.

This morning, we had reservations to kayak at 11.  We had long discussed how to manage the kayaks...we decided that if we used 4 doubles, then neither Will nor the littles would need to kayak alone.  So we teamed up Andrew with William (He has the most muscle so if he had to paddle alone then he was best equipped to handle Will.), Chris with Benjamin, Billy with Camden, and I had Caroline.

Justin, the watersports manager, had an amazingn sense of humor and entertained the kids while he was fitting us with life jackets.  He recommended that we head south first since the wind was light.  We did...and it was way too easy.  Of course, that meant that we were paddling with the current first...which is never my first choice.  We made it down to the 7 Mile Bridge, and I had the brilliant idea of going around the bridge piling to turn around and head back. 

That defines blonde moments. The 7 Mile Bridge is where the Atlantic and the Gulf meet at the end of Marathon Island.  That means that you have currents colliding...and since the tide was going out, the current was pulling us into the Atlantic...provided we didn't hit the bridge piling.

I was able to let Andrew and Chris know to turn around, but Billy chose to pass under the bridge to turn around.  I was way too busy trying to avoid the piling and attempting to make forward progress...I was paddling for all I was worth, but I was going  literally nowhere.

Someone mentioned today that maybe me and tidal waters should not be mixed. :)  Caroline was totally wigging, and I was just totally focused on getting us out of the situation I had unwittingly created.  Fortunately, the boys had enough upper body strength and were not as close to the piling as I was, so they were able to get clear a little faster.  It took a lot of muscle and sheer grit and determination, but we made it.  I was really glad that I had not gone for my run this morning.  I needed all the energy I could muster.  I think it is time to seriously hit the gym and build some of that upper body strength before I decide to take on tidal waters again.

When we returned, we told Justin about where we went, and he said, "You aren't supposed to go to the bridge.  The current there is too strong."  Really?  We hadn't noticed.  :)

The kids were starving, so Billy ran to the grocery store for some more lunch materials, we made sandwiches, and hung out at the pool.  About 3 this afternoon, Billy went back to the water sports tent and rented 3 wave runners which are like jet skis on steroids.  3 people can ride each one.  So, Andrew took Ben and Will, I had Caroline and Chris, and Billy took Camden with him and we had an absolute blast.  There is nothing quite like skimming the water at 50 mph. 

About 4:30 we decided that heading to Key West might not be a bad idea.  When you are all of an hour from the southernmost point in the continental US, then maybe you should go...and go in time for the sunset.  So we dashed through showers and headed out.

Wow.  It was crazy.  This is considered off season down here, and if this is off season, I have no desire to find out what it is like in prime season.  There were people everywhere!  However, the sunset was spectacular, the entertainment at Mallory Square was fabulous, and the evening was memorable.  We stopped at Amigos Tortilla Bar for dinner.  It was crazy loud and unbelievably busy, but the food was way too voluminous and it was amazingly good.  Oh, and their margarita was fabulous.

We did find the monument for the southernmost point, took a picture, and are now headed back to Marathon with some incredibly exhausted children.  I am utilizing my phone as a hot spot because as soon as I get Will's IV going, I would love to be asleep.  Tomorrow we plan to hang out at the pool with the kids and pack in preparation for returning home on Monday.

Day 3, Theater of the Sea

The travel of Wednesday, the snorkeling of Thursday, and their required wake up calls proved exhausting for all of us.  So Friday morning we let everyone sleep til they woke up, except for Chris and Will whom we had to wake up at 9.  The tropical wave that had been tormenting our weather had finally moved off and blue sky and insane humidity remained.  The blue sky we were grateful for.  Not so much the humidity, especially since we were going to be walking around an outdoor marine animal park.

This is probably the one item of Will's wish that I really didn't research much so we really didn.t know what to expect.  When we arrived (yes, the kids were about to revolt at spending another hour in the van.), we entered through the gift shop and followed directions to the desk for special programs.  The woman was very gracious, handed us a map, and told us the bottomless boat ride was about to leave.  We head out to get in line.

It doesn't take long for Will to look alarmingly unwell.  Billy gets him a bottle of water, and we go ahead on the boat ride, knowing that we may indeed leave as soon as it is over.  It only lasted 6 minutes, but it was really fun.  The dolphins swim alongside the boat doing tricks, and even swim inside the boat, which sounds weird, but remember it is bottomless.  The center of the boat is open, and the passengers sit along the outside edge looking over a short wall to the center of the boat. 

We fed everyone a quick lunch, then headed for a short walk around the outside exhibits.  There was a stream running through the park with fish of the area and a couple of really large turtles.  Then we got to the birds.  Ben stood in front of a parrot and bobbed his head.  Then the parrot bobbed his head.  Then Ben, then the parrot.  He stood there for forever just hanging out with this blue parrot.  Will is really looking rough, but he doesn't want to leave yet, so we head to the dolphin show with a couple of Powerades. 

The dolphin show was fabulous.  Not only did the trainer show what the dolphins, Twister and Sherman,  were capable of doing, but she discussed how they trained them.  We were sitting under a tent and there were fans, so Will was tolerating the heat a little better.

We then walked around the corner to the sea lion show.  Again, the trainer explained how they trained the sea lions. Wilbur, the sea lion for this show, was hilarious.  He smiled, waved, pretended to be a shark, and went down a slide.  When it came time to select people from the audience to toss a ring for Wilbur to catch, Ben was one chosen.  The girl handing out the rings stated that he deserved one because he was laughing so hard.

Due to the heat and fatigue, we opted to leave after the sea lion show.  We headed back to the resort where the kids thoroughly enjoyed the pool.  

For dinner...we headed to Keys Fisheries.  A couple of the kids are not huge fans of seafood, but I refused to allow them to order burgers.  At Keys Fisheries, you stand in line to order...there is a sign that says, "If you were at Disney, it would be 2 hours.  Here, it is 15 minutes."  All but one enjoyed the fish, the key lime pie was lovely,  but the best part was the employees who were not only helpful but actually had a sense of humor.  When your order is ready, they call out your favorite sports team....I blurted out Redskins, and they were like, "Who?"  Um, really?

It was a full day...the boys chose to watch a movie last night, but after connecting Will to his lifeline, I crawled into bed and fell asleep in seconds. 

Day 2, Happy Snorkeling Birthday, Camden!

Leaving home by 630 am two days in a row is a record for a couple of our kids.  Being awake at 630 am two days in a row is a record for a couple of our kids.  So despite whining and gnashing of teeth, we were indeed once again in the car at 630 am heading toward a new adventure.  After another hour and a half in the car, we arrived at Pinnekamp State Park.

There was a long line of people registering for today's snorkeling trip, but we made it through, received our equipment, and headed to the boat.  The sky was anything but blue and sunny, so it was pretty much expected that we were going to get wet...long before we jumped in the water.

We arrived at Grecian Rock.  William had borrowed an underwater video camera from some friends, so he headed off to explore.  Andrew grabbed Ben and they headed off to explore.  Chris headed off to explore.  Cam crashed and burned.  His snorkel was not a good fit, so he was taking on water which makes breathing a little challenging.  He has no gills, so he ended up back on the boat.  Caroline was refitted with a life vest and a new, smaller snorkel, and she waited for me.  I, without thinking, did the incredibly not bright move of jumping in without my mask.  Um, yeah.  Back to the ladder I go.  It is really the first time I have been in tidal water since I was rescued from a riptide last summer, so it unexpectedly took me a few minutes to adjust.  Once I did, I was fine.  Caroline was then handed into the water near me so I could supervise her.  Billy has no desire to be in water over his head, so he stayed on the boat with the incredibly kind and patient captain and dive master.

Off we went...and got halfway to Grecian Rock when Caroline just wigged.  Completely.  She tried to breathe through her nose, couldn't, panicked, and ripped off her mask.  Okay...I try to calm her down, get her mask back on her, and realize that we just need to head back to the boat.  So she keeps her eyes closed, I convince her to at least kick so I am not doing all the work for both of us, and I tow her back to the boat. 

They get her straightened out again...While they are working on her, Billy convinces me to head back toward the reef and come back and let Caroline know how cool it is, and maybe we can convince her to try again.  I do.  It is very cool, and then I head back to once again retrieve Caroline...but Andrew is swimming near the boat and apparently has already agreed to take her so I can actually SEE the coral reef.  I am very grateful, but that makes the third time I have swum against the current to arrive at the reef.  I swim around for a while, but the lungs are getting unhappy, so I head back to the boat and my inhaler.  All of the other kids arrive one by one, and everyone has enjoyed themselves...and are now starving.

We had encountered rain while on the boat headed to Grecian Rock, and as we were headed back to shore, it rained again.  We rinsed off, got back in the car, and headed for food.  The dive master told me about The Fish House, so we headed there.  What a great choice.

Andrew wanted one of everything on the menu, Chris decided a burger was safe, Will and Cam chose safety with the fish and chips, and Ben and Caroline decided to split a full Caesar salad and a half pound burger with fries.  (Billy was convinced there would be leftovers, but nope.  No leftovers at all.)  The food was amazing and really reasonably priced for what we received.  I asked if we could return there tomorrow, but I was voted down since it is over an hour from our resort.

The server asked if we wanted dessert, and I jumped right in and said, "Of course we want key lime pie!"  Like anyone in my family doubted that I would order that.  I looked at Cam and told him he could choose his own dessert since it was his birthday...and he chose key lime pie.  Good boy...knows a good dessert when he sees one.

Well, to everyone's surprise, the server wished Camden a happy birthday in a way none of us ever expected.

Yes, that is a fresh yellow tail snapper with a candle in it.  We are at the Fish House which purchases all of its fish whole from local fishermen and filets them on the premises.  What else would they put a candle in to sing Happy Birthday to someone?

We returned ever so slowly to the resort due to road work, and then the tropical wave that has been causing lots of unsettled weather hit with a fury.  The lightning and thunder hit just as I was heading to take Caroline to the pool, so we went to plan C.  Billy headed to the grocery store and the Redbox while I updated the blog.  The kids have been swimming, are now showering, and Chinese food has been ordered.  A nice, quiet evening with a movie and Chinese food, and hopefully a pillow not long thereafter is exactly what we need. 

I know everyone is worried about William.  Tuesday night he slept with an IV  and we continued with another IV all day while we traveled.  By last night, he looked truly awful and I was extremely concerned.  Today he looks better, but he needs another IV tonight.  The activity level is much higher than he is accustomed to, but so far, he is doing better than I feared.  I brought enough fluids to run two IV's every day, but so far, we have only needed one.  He may crash yet, but so far he is holding his own. 

Day 1...And They're Off!

I may have only gotten 3.5 hours of sleep before we left, but when we all got up yesterday morning, everything was packed and ready to go.  All we had to do was shower, dress, eat breakfast, and put a million bags of IV fluids and blue ice in our cooler with wheels and duct tape the cooler lid closed.

The limo and a Ford Explorer arrived literally on the stroke of 630.  They loaded up all of our luggage and the insanely heavy cooler, and then loaded us...after we took a picture.

So we headed to the airport in style.  Andrew played with all the gadgetry, and we all played the game "Discover the Pattern."  Caroline managed to stump the boys who were thinking way too hard for 630 am.

I anticipated a few issues checking the medical supplies.  Last time, I had to show documentation as to why we were carrying IV fluid.  But this time was a piece of cake.  He didn't even bat an eye at the Cooler Of Insanely Heavy Weight.  He just tagged it and sent it on its way down the conveyer belt.  Caroline thought it was so cool how the baggage all went down a really steep hill.  I just cringed, wondering if the wheels were gonna survive the trip, knowing that carrying it through the airport to the car in Miami would be enough to cause Andrew and Chris to mutiny.

The first flight was seamless.  Camden was a nervous wreck, but settled down about 30 minutes into the flight.  This was the first commercial flight for four of the kids...Then we got to Atlanta.  Caroline was desperate for a restroom, so she and I headed there while waiting for Billy to exit from the very the back of the plane.  We then walked as fast as possible to the next terminal, arriving at the gate just as they announced, "Last call for Coleman, party of 8, before we give away your seats."  Phew.  We literally just made it.  We had not previously received seat assignments, so as we are walking onto the plane we are trying to determine who is sitting with whom.  We are scattered all over the plane in 2's, so it was a little stressful.  But, it all worked out and we arrived safely in Miami which was the goal.

The condensed version from here to Marathon is:  We did get a rental van with no problems, drove around Miami looking for food and finally settled on a Wendy's cause we just wanted to get to the resort, stopped at Walmart for Will's required Powerade, water, and snack foods, then drove forever to Marathon, arriving at 730 last night.

When we walked into the resort office and gave them Will's name and the info from MAW, they were waiting for us.  The manager had apparently called and wanted to remind them to take a picture...they were so excited.  They told us they had a surprise in the unit for us and that there was more where that came from, and then they laughed and apologized to Billy and me.  Ruh Roh.  What exactly are we walking in to?

Well, they obviously have chatted with folks at MAW because once again, all of Will's favorite junk foods were waiting for him...the kitchen counter was covered with Sun Chips, 3 Muskateer Bars, Skittles, Mentos, Mentos Gum, a kite, a beach ball, and a pool noodle.  Wow.  The kids waited for me to take a picture then dove in. 

It had been a long day.  We did unpack, prepared for Thursday's snorkeling trip, and collapsed into bed.  The kids are not thrilled with another 530 am wake up call, but hey, they get to snorkel so no whining is allowed.

Snorkeling, Kayaking, and Limos...Oh My!

Will and I arrived home Wednesday afternoon in time to pick up the littles, head home, unpack, shower and change, and head to Richmond for his Make-A-Wish reveal party. 

And what a party it was.  Jervetta had outdone herself.  The table was totally decorated with a beach theme, and she had amazingly appropriate gifts for William...like a sand pail full of Skittles, Mentoes, and 3 Musketeers (his  favorite candies).  Then there was the bag of goodies for the beach, and a Make-A-Wish bear for all the kids, including Andrew.  Of course, Caroline's bear was white with pink lace.  :)

So over the course of the evening, Jervetta and Tammy went through the itinerary of how/when we were going to accomplish Will's wish of snorkeling and kayaking.  Make-A-Wish does not miss a beat.  As soon as Ben heard the "A limo will pick you up at 630 am" he just about swooned and totally stopped listening.  A limo?   Are you serious?  Unbelievable.

So, the limo takes us to the airport on Wednesday and we spend the majority of the day getting to the Keys, Thursday we snorkel, Friday we kayak, Saturday we visit Theater of the Sea, and Sunday is the free day.  Monday we head back and the limo will meet us at the airport and take us home.

So how is Will gonna handle all of this?  Not so sure, to be honest.  He now has a cold, which is an energy challenge, all of the activities are energy challenges, and it's going to be hot which is yet another energy challenge.  I have ordered enough IV supplies and fluids for two IV's a day, but that is really all I can do at this point.  I know where the hospital on the island is, I know what to do, but I just pray that he does well.  He knows he will have to travel on the Iv and every night he'll sleep with one.  Whether that is sufficient to prevent a massive crash I don't know...but I hope and pray it does!  Mostly, I hope he has the opportunity to be a 14 yo boy and can enjoy the time and experiences for which he wished...

I promise to blog and keep you up to date on how things are going.  :) 

My Beautiful Ballerina, Dr. C, and News

Someone has been blessing Caroline with ballet lessons since September.  And she has loved every minute of it (even if she does look utterly terrified in the picture.)  Her recital was last Saturday, and she was, of course, a beautiful ballerina in a sparkly, fluffy white tutu. She looked magical and totally enjoyed the process...except maybe the abject fear of being in front of a packed house.

So after her performance, the room mom came hurrying down the aisle to retrieve me, saying, "You need to come now."  Uh, okay.  I follow her into the room and Jen explains that Caroline had been white as a sheet and was laying on the floor.  Caroline says she is just tired.  I scoop her up and decide that maybe she just needs food.  So off I go to grab a chicken salad sandwich and feed her.  She seems to perk up and goes back to the room to await the grand finale.  Only a few minutes later...I once again am retrieved from the audience.  This time, I am not so sure it is a real problem, so I just keep her and let her sit on my lap. 

The next morning, getting ready for church, she comes down the stairs and says her legs feel funny.  Um, funny how...do they hurt?  ache?  feel heavy?  They feel heavy.  Why does this feel like Groundhog Day?

Tuesday I spoke with Dr. T and she informed me that they were ordering a new MRI for Caroline to see what happens to her brain stem when she bends her head back and forth.  She doesn't appear to have a Chiari, but the basilar invagination is distinctly possible. 

So I was determined to show her MRI to Dr. C here in Cinci.  Only I forgot it.  (I obviously lacked some organization heading into this trip!)  Billy managed to upload it, Will downloaded it and printed it on a CD, and I handed it to Mimi and Dr. C. 

Essentially...Will's MRI looks pretty much the same as in November after the procedure.  There is still a flattened area that they hoped would become a little more round.  At this point, they will perform an MRI in a year and see what it looks like then.  This finding would pretty much agree with Dr. Cohen in that the brain stem is permanently damaged.  Not news I want to hear, but neither is it surprising.

He looked at Caroline's MRI and agreed that we need the second MRI with flexion and extension.  His conclusion is that the Chiari issue is still in question because the bone structure used to measure the presence of a Chiari was not well defined.  The real issue was the brain stem.  There is evidence of cervical instability (the cervical spine is not stable) and the brain stem looks like it may indeed be compressed like Will's...just not as badly and for a shorter duration.  So, he believes she will need to have her first few vertebrae fused like William's, and the need for a chiari decompression or a transoral odontoidectomy is still unknown.

So, my beautiful ballerina does appear to be trekking down a similar path as William.  Am I in a panic over that?  No.  Am I sad?  Yes.  I have cried buckets this week.  But we do have a sovereign God, we do have amazing doctors, and we are catching this early.  Will that change her outcome?  No clue.  Since we don't know how much of Will's issues are mito and how much are brain stem issues, then we have no way to project how Caroline will progress.  But we can be thankful for today and for ballet recitals and fluffy, sparkly tutus that bring joy to her which in turn brings joy to us.

Sorrow, Take 2

Sometimes when you have been running a while, you want to stop and catch your breath.  But once you do, it can be difficult to start running again.  You can find plenty of reasons to walk or quit.  An object in motion tends to stay in motion.  An object at rest tends to remain, well, at rest.

So for me, a respite isn't always all that helpful.  Yes, the peace is lovely.  The slower pace is heavenly.  But the knowledge of what I have to return to is not so helpful or lovely.  The emotional rests is amazing, but in 36 hours, I will be back on the front lines where the fighting is most intense.

I love my family.  I miss them when I am not with them.  I miss the hugs and the kisses goodnight,  I even miss Chris's OCD need to know exactly what is going on tomorrow.  What I don't miss is the survivor mentality.

A while back I wrote about the whole survival mentality.  When a natural disaster occurs, typically what you see are people trampling their neighbors to obtain food and water.  The same thing happens within a family who lives in constant crisis mode.  The kids trample one another to obtain what they emotionally need, the couple are intensely focused on different things, and the whole concept of teamwork is literally thrown out the window.

I am not suggesting that my familly is trampling one another.  But the teamwork is definitely gone, and the level of angst is definitely at an all time high.  The question is, now what.  Where do we go from here and how do we help the kids develop healthy coping skills while trying to still deal with a spouse who is also struggling.

When I was told that 70-80% of marriages with a chronically ill child end in divorce, I was shocked and incredibly prideful.  There was no way that was happening to us.  But here we are three years later, and the entire family is struggling.  There is not a relationship that is not affected.  And when you are stressed, then generally your best foot is not put forward.  So the struggle escalates.

The question is...what now.  I have no answer...so we continue to get up in the morning and work all day and fall into bed exhausted at night, knowing that tomorrow brings another day.  Is that fatalistic?  Probably a little.  But it is more a case of not knowing what else to do.


So we cry...a lot and we realize that “There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.” (Washington Irving)  and we continue to look for solutions, all the while praying that the Lord would work out His plan for our family and give us the strength we need to manage whatever comes next.

Where's the Pump???

Thursday, we met Gordon, the pilot for the first leg of our trip to Cincinnati. The flight was longer than normal due to a strong headwind. We finally arrived in Beckley to meet the infamous Charlie, who loaded our gear while harrassing us about how much stuff we bring. I had brought cookies for both pilots, so I threatened to take his back. 

We headed off to Cincinnati amidst headwinds of 65 knots and lots of storm build up. We can't go over the storms due to their height, so we have to vector around them. At one point, looking out the window, it looked like we were surrounded by mountains of clouds. It was beautiful, but incredibly stressful for Charlie.

As a result of the head winds, the entire flight took significantly longer than normal. Charlie needed to let the storms die down before heading home, so he went to Dewey's Pizza with us, then off to the Riggs's to unpack and let Will rest. It had been a long day.

After returning Charlie to his plane, I headed to the grocery store, then back to Will to start an IV...only to discover that I had forgotten our IV pump. With a port, you have to use a pump; you can't run the IV by gravity, so we were totally stuck. Of all the things to forget, this was probably the worst.

So Friday morning, Will isn't ready for an ER, but he certainly is not looking great. Our IV company at home graciously agrees to overnight us a new pump, so now all I have to do is figure out how to get him safely through his MRI, the day, and the night without needing to go to the ER.

We had a long talk about how much Powerade Zero he would have to drink in order to compensate for the lack of fluids. And he would have to eat. There were no guarantees that he would avoid the hospital, but he would have to be the one to put forth the effort if he wanted to avoid it.

We were very fortunate that the weather here was cool and fairly dry which is significantly easier on him than the heat and humidity back home. He was able to hang out with his buddy, Chris, after his MRI, but that visit centered around the computer, so it was not physically stressful. By last night, he had done a phenomenal job of drinking and eating as he should, and while it went against my better judgement, we stayed home and did not head to the ER. The pump arrived safely this morning, and he has had fluids all day to try to catch up. He still looks pretty rough, but better than he did this morning. I am so grateful to our IV company for being so gracious and overnighting the pump to us.

This morning I was blessed with a long walk and chat with Becky G and yet more time with Becky R. It is such a gift to know that we have a second home and family who love us here in Cinci. Will slept through almost all of that, but tomorrow he gets to arise with us mere mortals and attend church.

We see Dr. C on Monday to review the results of the MRI and determine what state the brain stem is now in.