Sunday, September 30, 2012

Low Acid, digestion and more

These boys of mine are just not getting better!  Arghhhh.... Spencer especially is suffering so much and nothing is helping, not even the $1100 antibiotics he just finished up.  His problems have consumed my mind,  I mean, whatever part of my sane mind is left.

Last night I was at Barnes and Noble just killing time before meeting some friends and I came upon the most amazing and interesting magazine called The Well Being Journal.  I had no business spending $6 for a magazine but it just may have been the best investment ever!

What caught my attention was an article about proper digestion, stomach acid and acid-suppressing drugs.  The article talks about how so many people take acid- suppressing  drugs because of acid reflux complaints, heartburn and ulcers.  My kids have been on Nexium for years!  I can't remember when they weren't on some kind of antacid.  The article states that 90% of people that complain of acid reflux actually have normal acid production.  Insufficient acid in the stomach is actually much more common and presents with the exact same symptoms as too much acid!

I have had some bad problems with canker sores over the past few years and have narrowed the cause down to certain foods like chocolate, caffeine, sugar substitutes and salt.  Two years ago, I read about low acid and asked my doctor about supplementing with an acid and he sort of laughed and didn't think it would work.  I started on an acid I found at the health food store myself but then scared myself out of taking it because if you don't need it, it can cause even bigger problems and you can take too much.  Now, I'm starting to rethink things.

The symptoms of low acid are chronic diarrhea, gas, bloating, excess sense of fullness, nausea, bacterial overgrowth, gut imbalances, parasites, fatigue, food allergies and intolerance like gluten, frequent infections, nutrient deficiencies like B12, folate, iron, calcium, zine, malnutrition, malabsorption and the list goes on and on.  Spencer has just about 100% of these symptoms.

It goes on to talk about all the problems antacids cause like increased pneumonia, bone fractures, C-Diff, low levels of magnesium...Spencer has all of these too!

This might just explain the issues we have been dealing with and why it isn't getting any better.  I have also thought about babies with reflux and the seemingly growing crowd of people with so called gluten intolerance.  Maybe the real problem is too little acid, not too much.  It makes total sense in babies who just might not be completely developed in their gut.

What if all this time, we have actually been doing more harm than good?  It's not just Spencer but all the little SDS kids I know who are all in the same boat!  What if giving our infants all these antacids are actually setting them up with respiratory problems and host of other issues because it lowers their immune system?  It's kind of scary that doctors don't do more to educate people or themselves and the question gnaws at me, Why do I always have to be the one to figure out the problems and have to report and make suggestions to the doctors?  Something isn't quite right about that!  You would think after all the specialists we have seen, one would have thought about testing for low acid production. This may not be the problem at all but it's worth a shot and easier to believe than a bunch of the other ideas they have thrown at us.

I really hope this is not just another dead end.  Spencer passed on in the kitchen on Friday afternoon.  It's getting scary.  


Wednesday, September 26, 2012

$20,000 Reward!!

Missing:  45,000 Platelets!  I believe they've been KIDNAPPED!
They were last seen a week ago floating around in Shelbie's bloodstream
They look like Octopus and answer to the name of Platelet.
I suspect they have been hijacked by a guy who goes by the name of Immune Sy Stem.
Please call if you find them.  We really miss them and would love to have them back in our tender care.
You can call us at 1-800-FIND MY PLATELETS

There is a $20,000 reward because that is what it is going to cost me to replace them.  Here is a picture of her missing platelets.  You can tell they are hers because they are so little and cute and like she is.  Seriously, can't you see the resemblance?  Oh, and they stick together!

Below is a picture of the guy we think kidnapped them, Immune Sy Stem!   He is red with anger and I believe it's an inside job.  You may however, see him floating around.  He has a lot of body guards who are generally tall and thin, a little green around the gills.  He may look innocent enough but he is armed and dangerous!!  Be very careful!!

Okay, all joking aside, so long to Normal! It's not like I'm joking but making light of something serious helps my frayed emotional brakes from going on a crying spree that may never end.

 For over a year, we have enjoyed a normal platelet count in Shelbie.  Today, we were thrust into the not so normal arena.  While at a check up to make sure the Iron transfusions worked, we discovered that her platelet count has plummeted 45,000 in just 7 days!! Ugh!  We are now at 135,000.  We are not in danger yet but this is an ugly trend and far enough below normal to make me squirm.  Her numbers that indicate platelet destruction are way high so the odds of the platelets falling fast are pretty good.  Sad.  So sad.  Wasn't expecting this and not ready to face what may come in the near future.  Hopefully, IVIG will keep her limping along before we have no choice but to do another round of chemotherapy.

Oh well, such is life in the fast lane, where things change by the hour.  Still keepin the faith, not defeated, not today.

Tuesday, September 25, 2012

Under, Over, and Around...

Today, I made some progress!  Yay for me.  I have just felt so mired down with life lately and as hard as I try to not let the kids see my frustration and fatigue, they are smart kids.  They too are feeling a little squashed by life.

I realized that I have been trying to steer the river.  Trying to control all these events that I have no control over.  I have tried to sneak under the problems, crawl over the problems, skip around the problems, just about everything but face the problems.

I am an avid blog hopper.  I read all sorts of blogs from all sorts of people going through all kinds of things; some happy, some sad.  I have noticed a common thread in all of us and I include myself in this observation. We start off in the trial all excited to prove how strong we can be.  We are full of energy and ready to take on the challenges.  Time wears on and erodes some of the 'can-do' attitude.  If things don't turn around in a respectable amount of time or the problems mount and double then it's almost unbearable and finding any joy at all in the journey becomes nothing more than wishful thinking.  Then, all at once, something happens and the whole situation changes for the better and hope returns and happiness prevails and everything is good once again and we can smile.

So, my progress today is more of a revelation than it is anything else.   One of those Ah-ha moments.  I really need to find that hope, that bright, relief of hope when the bad events turn good, that humbling gratitude but find it even when everything seems hopeless. I keep waiting for brighter days, for good things to come our way so I can be 'happy' again but maybe, this IS the best it's going to get for us.  After all, the kids are chronically sick.  That means there is no cure and things are not going to magically disappear and one day they will wake up healed.  I have tried really hard to feel that unburdened feeling today despite some rotten things going on.  Surprisingly, I am not feeling defeated.  Tired, but not defeated.  I am in fact feeling an overwhelming sense of gratitude and blessings from God.

Spencer made it not even three blocks towards the school this morning and ended up pulling over to get sick.  He came home white as a sheet and dizzy as all get out.  I had a big and stressful day planned and was on the verge of freaking out when I decided to keep myself in the 'hope' zone.  I bedded him down, and wished him well then carried on with the needful things.  I just faced the problem, did what I could then moved on.  It was so hard to call the school to tell them once again that Spencer wouldn't be there due to illness.  Every time I call, I just sense that they are starting to think I'm making this up.  I dread it!  This time, I told her and when she paused for some explanation or promise that it would not happen again, I just hung up.  I can't change that my son is sick right now and I can't invest my energy in school either.  No amount of whining or complaining is going to restore his health and they can threaten me with all sorts of loss of credit and whatever other policy we are breaking but it's just not the most important thing in my life right now.  That felt really good to give myself permission not to care about the school.

I'm not promising that this new found attitude is the new me but for today, it felt good.  It takes so much energy to stay in the zone but worth it at the end of the day!


Sunday, September 23, 2012

My Kindness Shall Not Depart From Thee

I love this video.  I love the message of the words.  After a long couple of weeks, it's a good reminder that bad days don't last forever.  I especially love the words of Jeffrey Holland before the video.  I want to dedicate this to a few of my friends who are having hard times right now with illness, unemployment and a number of losses and stress.  I do know that despite the hard and difficult days, God's kindness always comes through at the end of the day.  You may have to do a little searching to find it but He's there.

Hang in there.  Make it a strong week!


Thursday, September 20, 2012

Day 2

We are day 2 on the antibiotics and so far, nothing has changed.  I know it seems early but the doctor told me I would see huge changes the first few days if it was going to work.  Nothing huge in that area.

Can I just say this country is messed up!!  10 days of this antibiotic cost me $1100.00!!!  Insanity!  There are scarcely words to describe the sinking feeling I have every time I have to go to the pharmacy.  Yesterday, Shelbie had her transfusion so it's been an expensive week.

It seems like I try so hard to find any piece of good news to report but we are really going through a hard time right now.  I'm not going to lie.  I did hear that Spencer's wish will be sometime the end of October or first part of November so that's a good thing for us to look forward to. He had a good time writing down all the things he wants to do while we are there.  He put down that he wants to see Wicked!  Again, I'm not gonna lie, I secretly cheered inside when he said that.  I  was trying so hard not to sway him in the Wicked direction and when he arrived at that on his own...well, it will be so exciting. He wants to tour the Empire State building, take a stroll down Wall Street (this surprised me), visit the Metropolitan Museum of Modern Art, (again, secret cheering), Times Square, and then shopping on 5th Ave. (no secret cheering but it will be fun.  I will feel like Pretty Woman before she had Richard Gere.  Maybe I will find MY Richard Gere and he will give me his credit card for shopping on 5th Ave...Okay, back to reality)  Anyways, I think Spencer will be so happy and I am excited for him!  So excited for him.

Until then, we just have to keep our head above the rough waters we find ourselves in.


Wednesday, September 19, 2012

Mitochondrial Disease Awareness Week

Of course I stole this information from a Mito mom friend, who stole it from a Mito mom friend and so and so on.  It's  a pretty simple list of some of the ways Mitochondrial Disease affects people.  My children to be more specific.   

"This week is Mitochondrial Disease Awareness Week.  Mitochondrial disease is often referred to as an energy crisis in cells, it may be a misunderstanding that this disease is all about lack of energy or fatigue. Don't get me wrong, overwhelming fatigue is a daily occurrence for many but there is so much more to this disease than lack of energy or being tired. It i
s also about:

- the stomach that will not empty or is unable to digest food or the bowel that becomes
unable to move
- the tremors, abnormal movements, seizures, cognitive deficits, dementia, migraines,
strokes, and development delays
- muscles that are in almost constant pain (imagine having the flu every day of your life)
- kidneys that do not function to remove waste from the blood
- the loss of hearing and/or sight
-liver disease
- the autonomic nervous system that malfunctions so heart rate, perspiration, digestion, respiratory rate, and pupil dilation are compromised
- heart defects such as cardiomyopathy and heart blocks
- diabetes and endocrine system deficits
- weakness of the respiratory and skeletal muscles
- weakened immune systems that can turn even a mild illness into a life threatening emergency"

The list goes on but this is a pretty good start.  My kids have the majority of problems on this list with exception of liver disease, heart defects and hearing or sight loss.  I am so thankful that those parts of them are still functioning normally.  

We've been trained to believe that if something ails us, we can simply take a pill to feel better.  Nothing cures Mitochondrial Disease.  Nothing.  The mitochondria are like scaffolding.  They keep the cells up and functioning.  When they become diseased, the scaffolding begins to crumble and we begin to see disease that can not be cured and the damage is irreversible.  It's a sad thing.  The hardest part of the disease for me as a mom, is to hear and see my kids struggle everyday and not be able to do anything to help them.  No matter how much they beg for relief, I can only offer a hug.  Hugs and kisses work fine on boo boos but not on mito disease.  


Monday, September 17, 2012

Sideways News

"I have some good news and some sideways news."  I love our GI in Boise.  I love that he doesn't call it bad news, just sideways.  Anyone can handle sideways news, it's the bad news that really messes with you right?

Without further ado...All the major tests came back NORMAL!!!  Hooray right?  Don't get me wrong, it's good but at the same time, doesn't offer any insight into my sick kids.  He was able to confirm that they have a bad bacterial overgrowth in their intestines.  That's the sideways news.  

C-Diff came back negative but from the pictures he saw of Sam's most recent colonoscopy, he said  he is 99% sure he has the bacterial overgrowth.  The little ulcers all over are classic for the disease which is when a bad bacteria takes off and destroys the good bacteria.  Because Spencer's symptoms are so close to Sam's he thinks Spencer has the same thing. One major obstacle is their poor immune system.  Their body is not mounting a fighting response so the bacteria is just running rampant.

The boys will be starting an outrageously expensive and by that I mean over $1000 each child, at least that's what I've been told to expect and it is not easy to get.  We will start them off for just 10 days.  The doctor said we should see a 100% improvement in the boys and if not, then back we go for more testing.  I am praying this works.  Our pharmacy doesn't have the drug readily available so it will take several days for them to get it here.

In the meantime, I have been bleaching all the hard surfaces in our house.  I know we have been living with this for over three years now, but I am hoping that by killing all the germs now and a daily cleaning with bleach, we will get rid of this horrible bacteria once and for all.  It's a ton of work and my hands are raw tonight.  As I was cleaning, I thought back to when I brought Sam home from the hospital when he had C-diff before. I was paranoid.  The nurses had warned me that it was extremely contagious.  Sam had to sleep on an plastic air mattress for months.  He had his own special towels that I had to wash in bleach.  He had his own bathroom that I bleached down every time he used it.  I washed his clothes separately in hot water.  It was quite an ordeal, one I hoped back then to never have to revisit.

I am not going to go quite to those cleaning extents but I am being very careful. I just want to know that I have done everything possible to help them get better and keep Shelbie from getting it.   Hopefully, her monthly transfusions are keeping her somewhat protected.  We need to be vigilant in making sure they take all their pills and never miss.  That's so hard when they are gone to school for lunch.  They don't always remember to take them.  They are going to have to work on being more proactive in this area.

Well, that's how our world is turning these days.  I am neither upset nor overjoyed.  It is pretty much what I had expected.  Hopefully, tomorrow, I can finish my bleaching and pick up a big supply of Clorox wipes and paper towels.


Wednesday, September 12, 2012

Welcome to Crazy Town

I hope you are just here to visit because living in Crazy Town is not much fun these days. 

I have a friend in the Shwachman Diamond family whose child suffers with chronic infection the way we deal with chronic nausea and other unmentionables.  She wrote on her Facebook page a bible verse about how great God is who can so marvelously alternate joy and tears to lead the soul by unknown paths to perfection. 

Oh, so is that how we become perfect? A little joy and a few tears?  If the laughing and crying are happening simultaneously, does that mean you are getting perfect faster?  You gotta wonder about these things ya know.  I'm not sure you really become perfect, maybe perfectly crazy but not perfect, just sayin'.  (Yes, in case you were wondering my laughing fits mixed with crying continue and yes, I am going to see a doctor about perhaps sedating me for the next 10 years until this mess passes. Just kidding. I think it's never going to end. At first, I naively thought to myself, 'bad luck can't last forever', but it does actually.  I would love to sleep for 10 years though.  That would be nice.  Not dead, just asleep...but not miss anything fun or important like a new Pinterest craft or awesome recipe I would need to try, that kind of thing.)

I seriously think I am the slowest learner ever and really, I think that there should be limits on how long God should keep trying to teach you the same lesson.  Like, I would say that if you can't figure it out after, oh say, I don't know, 7-10 years of sustained trials then maybe He should move on to a different technique because I am obviously not getting it.   I try to get it, I try to be patient, I try to 'figure it out' but this one is lost on me.  I'm not sure if I'm a visual learner or what, actually, I'm a verbal learner.  Just come on down here, send an Angel or something if He's tied up with other things, and flat out tell me what I am suppose to learn and then we can be done and move on to bigger and better things.  I mean, is that too much to ask?  In this case, I am definitely a verbal learner, straight up.  No crypt-o-grams or acronyms and none of this ROFL or LOL, just tell me what I need to be learning then we can all join in a robust "Hallelujah" and cheer!

In the last 24 hours...
Spencer had to leave school sicker than a dog
Spencer woke up this morning, sicker than a dog
Spencer spent the day, sicker than a dog
Sam came home from school wanting to drop out
Sam decided homeschooling would be fine
Sam had a meltdown because I'm not allowing any of those options to happen
Sam has two speeches, one devotional and pages of math due tomorrow.  
Sam will finish his meltdown in about an hour, then try to start homework
I was laid off from my part time job today
I will be losing another job in one month
     Oh, the joy, oh the tears....


Tuesday, September 11, 2012

Fecal Transplant

Gross title right?  This may soon be a reality for us in the not too distant future.  I am waiting on the edge of my seat to find out the kids' results from Boise.  I'm in the stage where I just can't seem to focus on anything.  On top of the stress that waiting brings, I am trying to get Shelbie's transfusion scheduled and find work, finish work, house work; there's all sorts of work to do but I can't sit still and get it done.  Ugh.  I still haven't unpacked from our travels last week, the kids have no clean clothes and I just can't seem to get one load, just one load in the washer.  Oh well....maybe this will be when they decide to do their own laundry.  Now there's a wishful thought!

So, back to the strange title of this post.  Fecal Transplant.  Yes, it is exactly what it sounds like; disgusting.  I've talked alot about Spencer but Sam is not on top of his game either.  I feel pretty confident that his tests will come back with a positive for C-Diff again.  At one point, the doctor said, "Sam really hasn't felt well since his surgery three years ago has he?" 
He hasn't been the same.  He had C-diff after that surgery for 6 months and we just assumed it had gone away.  If this test is positive, it means he has suffered with this for 3 1/2 years!!  That's a long, long time for a potentially life threatening bacteria to be moving freely in your intestines. All the literature says that it is highly contagious and can only be killed with bleach.  That means all the hand washing in the world will not prevent anything!

We will have two treatment options.  One is to try a strong antibiotic to kill it.  He can't have Flagyl because of his mitochondrial disease so that leaves Vancomycin as the gold standard of treatment but it is over $1500 a month for the pills.  He would likely be on it for several months.  The second option is to do a fecal transplant. 

They would place a feeding tube in Sam for the length of the therapy, then stool would be collected from someone in the family who is healthy so, that pretty much leaves me.  The donor stool is mixed with milk then administered to Sam through the feeding tube.  He would have several infusions over a period of time.  The idea is that healthy, good bacteria is transplanted from the donor to the intestines of Sam to replace the bad bacteria that has over run his body. 

I am not kidding about this!! Would I seriously make this crap up?  (No pun intended)  I wanted to throw up as the doctor was explaining this to me.  If it gets to this point, I can honestly say that my life is stranger than fiction.  I can't even start to wrap my head around this idea.  I looked online and there are even instructions on doing a 'home transplant'.  Who thought this was a good idea?  I can tell you right now, Sam will have to be sedated and probably administered some mind altering drugs to get him through a treatment like this.  I am dreading the results.  If things are too bad, then antibiotics won't even be a choice, he will want to jump right to transplant.

What do you even pray for at a time like this?   I am so glad I live in Crazy Town.  If you see me rocking back and forth with a strange twitch, you'll know why....

Monday, September 10, 2012

Laughing til I cried

I can't believe how mentally exhausted I am. The visit with our GI, though productive was so overwhelming.  We are still waiting on some test results this week but regardless of those, we will be heading back very soon for Spencer to undergo some more in depth studies. 

Have you ever tried to get a stool sample from your kids?  I think I have become the master of this.  I have been doing it since they were teeny, tiny.  It was so much easier back then, wait for a poopy diaper then load it into the speciman jar.  Now, they are big, grown ups really.  It's much harder convincing a 14 and 18 year old of how important invading their privacy is. 

We left our 4 hour visit with two 'hats' for the toilet, two speciman jars and two popsicle sticks.  Are you feeling grossed out yet?  You know what needs to happen next but consider this, we are nowhere near a private bathroom and I have two kids who need to make a 'deposit'.  Thankfully, they were in a jovial mood and could joke about the testing.  The jokes were fine but didn't make it any easier to collect.

I took them to eat the greasiest, fattiest lunch I could find and didn't give them their pancreatic enzymes.  This would ensure a speedy end to the inevitable.  I then drove straight back to the hospital where we stalked out a bathroom that was the most out of the way from the general population.  We sat outside the door...and sat...and sat. 
"C'mon guys, give it up, go get this over with....PUHLEASE??? I know you have to go."
"You can't make me.  I'm not going to give it up without a fight."  said Spencer with a sheepish grin.
"Ya, you do it yourself."  chimed Sam.

It was just a comedy routine from these two over the speciman deposit.  Shelbie and I were in stitches most of the time.  I realized that we deal with stressful situations with laughter.  We don't even laugh about funny things.  Most of the time, it's dumb but we are all red-faced and trying to catch our breath from laughing so hard. I'm sure we look like idiots and that might explain why people were staring at us. Even when I went to drop the specimans off at the lab, I busted up laughing when I handed the still warm jars to the receptionist.  Then, she made me write their names on them!  I tried so hard to keep a straight face and act like the 40 something year old that I am instead of a 12 year old.  It didn't help that my kids were hiding around the corner laughing at me and snorting and making funny jokes.  It was a disaster.

We finally got on the road to come home late in the afternoon.  The kids were all quiet, playing games, listening to music and I started in with the most hysterical laughing.  I don't even know what I was laughing at!!  The kids were looking at me dumbfounded and then all at once, the laughing turned to hysterical crying!  I couldn't contain the crying either.  It was the weirdest thing I have experienced.  I felt this huge break of emotion that seems to have been damned up for months, maybe even years. 

The rest of the week I seemed to have a hard time containing my emotions.  I found myself wanting to laugh at the most inappropriate times, maybe because the amount of crying I would have done would have been over the top.  I don't know what is happening to me, some kind of crazy I guess.  I think you can only handle so much stress... 


Wednesday, September 5, 2012

Boise follow up- long post

We just got through at St. Lukes and our Gastroenterology visits.  Finally, a productive visit!  Between Spencer and myself, we were so fed up I decided to do something I have never done before.  When we got in there, I told him how tired we were, Spencer especially, of doctors just guessing at the problems, throwing another drug at us in hopes things improve but they never do.  I told him of Spencer's plan to quit all his meds three weeks ago and show up sick to this appointment.  I wasn't totally in favor of this plan but supported Spence nonetheless.  I flat out said, "We need you to listen to us and don't feed us a line of excuses or maybes.  Don't just send us away with another pill to swallow."  Once he started wrapping up the appointment and re-capping the plan, I said, "Please, please do not call me with results and say, everything's normal and leave it at that.  Just because a lab deems things 'normal' does not mean all the symptoms magically disappear. Call me with step 2, then step 3..."  He agreed that he would communicate better. 

So, here's the run down.  Spencer is sick.  He has so many issues going on that once again, have been misdiagnosed or not diagnosed at all!  I wanted to punch someone!  He has this ongoing throat issue with loss of gag reflex, now this feeling of a fullness and he is drowning in mucus.  He has always been treated for reflux but that is not the issue at all, at least not the issue affecting his throat.  He believes that Spencer has a cranial nerve problem that interferes with the mechanics of his throat and is preventing him from swallowing correctly so mucus keeps building up until he can hardly breathe.  He thinks he has apnea because Spencer describes waking up every night gasping for air.  He thinks all of this is being complicated by an insufficiency in Vitamin E which helps with nerve function. 

As for the GI stuff, nausea, diarrhea 6 times a day, pain etc, the pancreas is still struggling and it could also be that his whole system is inflammed but due to an overgrowth of bad bacteria because his immune system is so weak.  He said he is pretty sure he doesn't have colitis or crohns.  Again, the Vitamin deficiencies could be causing some of this.  Truthfully, he doesn't know yet.  We did some stool studies to test for a myriad of things and we will see what that shows in a couple of weeks.  At that point, he may scope Spencer. 

In the meantime, he is scheduling a sleep study to be done in Boise and an appointment with an Ear Nose Throat doc there as well as a Neurologist to work with our doc in Seattle.  That will be coming up in a just a few short weeks. 

Sam was the biggest surprise of all.  He most likely has C-Difficile!  If you've been following us for any length of time, you might remember Sam's health ordeal 3 years ago when he had an intesception of his intestine.  Right after that surgery, he got C-diff.  A horrible, horrible intestinal bacteria that lasts forever!  It was months, more than 6 before he started feeling better.  It is apparently highly contagious.  I showed Dr. Thompson Sam's colonoscopy pictures and he said, "Sam has C-diff."  He was tested for that in April, it was negative and he hasn't had any of the symptoms like he did in the hospital.  He said that they are seeing antibiotic resistent C-diff that becomes chronic!  That explains why Sam has felt like, well, crap for 3 years.  Before we start him on the $1500 a month medicine to treat it, he also had to donate some stool for a host of studies to rule out other things.  And again, we have possible Vitamin deficiency.  The good news for Sam is that he gained 15 lbs in one year!!!  He is finally in the 5th percentile!  He also grew 3"!  Amazing!

Shelbie is showing signs of a struggling pancreas again!  Vitamin deficiencies...again! 

I feel good about this visit.  I feel like he really listened to us and we are headed in a good direction.  The bottom line is that these kids are plagued with neurological problems to which there is no cure, no relief.  That makes my heart break.  I was terrified when he said to Shelbie, "I am so glad to see that you are hanging in there.  Last year, I felt like you were deteriorating so fast, I didn't think you would be around much longer.  It seems you have rallied some."  My heart just sunk.  I know it was a good thing, is a good thing but scary too. 

Aside from this mundane report, it was psychologically, an interesting few days.  I will post about this dysFUNction later.  I'm beat.  We head to Canada bright and early tomorrow. 

Tuesday, September 4, 2012

Make A Wish

I am so excited for Spencer tonight.  He will be one of the Make A Wish, child ambassadors at their big, annual fundraiser.  We will attend the pre-event where Spencer will engage with people who are coming with bulging wallets to make life a little brighter for children everywhere, to give my kids a little respite from the day to day struggles. 

Things are rolling with his wish.  He has wished to experience New York City!  If there is one thing Spencer loves, it's a big city!  He was definitely born in the wrong zip code; right family, just wrong destination. 

People in New York, and surrounding cities here are all working together to give Spencer the most exciting experience.  I am so grateful to them, all of them for their passion and excitement to do this for us.  If we can finish things up this week, it looks like we will be jet set in October. 

Make a Wish is such an important part of the disease process.  Until you are faced with life threatening situations, it's hard to understand how exhausting it is, not just physically but mentally too.  It's so hard to be the shock absorber, to keep everyone from sliding into a dark and hopeless place.  Make a Wish is hope.  Make a Wish is smiles, smiles that often become dull and forced. Make a Wish is a much needed break.  A chance to go somewhere, in our case where our doctors are not.  That's a big deal.  We always combine 'vacation' with hospital and doctor visits because we really can't afford to do it any other way.  So, vacations always involve pain and fatigue, worry and sadness. That's just not fair, so many nights, I go to bed sad that another day of struggle has edged it's way in despite our best efforts to remain positive. 

Spencer needs this wish in the worst possible way.  I can't even find the words to express my deepest gratitude for generous people who are making this possible; who are taking the end of our rope and tying a big knot in it so we can just swing for a few days, hopefully a few healthy days together as a family. 

Sunday, September 2, 2012

Anxiously Disengaged

Not sure if this post actually belongs here or on my Nutnyys blog or another blog altogether.  I decided to stick it here, it's just a mixed bag of delight...just kidding, not really delight but you know, always trying to be positive over here.

This is such a crazy time in life.  I can honestly say, this stage of life is both my least favorite and my bestest stage ever.  (I know, I made the word bestest up, just go with it.)  One minute can be filled with shear dread and horror as I see my kids growing into adults so fast and then next minute I am feasting on their amazing, loving personalities and closeness we share as a family.  Why would I want to let that go? 

Spencer will be turning 18 this coming Saturday.  Unlike Shelbie, he is ready to blow this popsicle stand but I am not ready for him to take off.  Good grief, he is still in high school, I figured he would stick around until graduation at least!  It happens so fast, too fast!  One minute, they are in your arms and the next minute moving out! I find myself desperately holding on, remembering one more thing I need to teach them, hoping they have the basics of life and making good decisions on the list of 'Things I have mastered' instead of 'Things I will learn someday'. 

Last night, he confided in Shelbie that he was leaving in two weeks.  He didn't want her to tell me but of course she did!  I came unglued, mostly out of fear of losing him.  I called and called him since he was staying at his Dad's this weekend but he never answered.  Finally, after 1 am, he called me back.  We had a good talk.  I felt so much love for him. 

Spencer has had a really hard year as far as his health is concerned.  He is tired and a bit frustrated that things have gone downhill for him so much recently.  He wants things fixed but there is no one, including me who can just fix it for him.  I see him trying to fill his time with things that he hopes will bring him the happiness and peace he so desperately needs.  Moving in with friends is one of those things he thinks will make everything better.  He promised we will work on things together, try to find the right way to handle this precarious situation he finds himself in. 

18 is a hard age.  It's a time when they feel a lot of pressure to plan out their life.  It's terrifying at best for some kids, then factor in the chronic health problems and things just turned thermal nuclear.  I have a huge job ahead of me to try to empower Spencer, direct him to the good things in life that will bring him lasting peace and fill in the voids he feels because of our family situation.  I think he's worried that he will always have to rely on me to keep him healthy and that threatens his autonomy and scares the bejeepers out of me. 

So, here we are again in the gray areas of life.  No owners manual or at least not one that I can find.   I am anxious, so anxious that I have been unplugged, disengaged this week at least at home.  I have taken care of just about everyone else and their dog and sort of ignored my family because the puzzles we face here at home range in severity and I just don't know where to start piecing it all together.  Every problem we face is major and impacts us in so many ways.  It's just a little overwhelming.

On Tuesday, we head to Boise for our stint at St. Lukes.  You can bet I will be busy until then, trying to empower the kids to take charge of their health.  To plan what they want to talk to the doctors about, how they need to be helped.  Actually, in a couple of weeks, a popular Shwachman Diamond Doctor will be holding a webinair for SDS teenagers to help them cope and transition from the world of pediatrics into the world of adulthood.  I am so looking forward to that and will insist that my kids take part. 

There is so much to do.  Along with all this, I see the pains and struggles of other people around me and just want to save them all from feeling sadness and worry but I can't and that bugs me to know end.  I have always felt that it's okay for me to take on crappy crap but it hurts to see other people having to take it on and there is not a thing I can do.