Wednesday, December 31, 2014

Settling in

I finally approached the Dyskeratosis Congenita support group late last night. I've been living in denial since May.

 I inquired about heart defects in DC.  I had some wonderful moms private message me that in fact, their sons heart look just like my son's.  Not only that, the pulmonary AVM is also something common.  One mom said, that that issue is going to be the thorn in our side.  It can not be fixed.

This is what the further testing will be looking at, to see if Sam has a pulmonary lesion or AVM.

Things just started feeling really complicated and overwhelming.

I didn't sleep at all last night.  I went to bed at 2am and at 3:15, I was awakened by Sam who was feeling pretty sick.  I drugged him up because there is nothing worse than vomiting!  Thank goodness we had some Zofran around.  At 4 am, he admitted to eating an obscene amount of Fiery Hot Cheetoes at the little party he hosted at our house last night.

Well...that'll do it when you have a pancreas that isn't really loving life on most days!  He finally fell asleep a little after 4.  I laid there exhausted and fell asleep for an hour or two but that was the extent of my sleep.

Being alone and awake at an ungodly hour is both peaceful and lonely.

Today is New Year's Eve.  I am trying to figure out how to bring in the new year with a positive note, figuratively speaking of course.  I will be alone and I have mixed feelings about that but such is life.  I don't want 2015 to start with a bad mojo in the air.

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Tuesday, December 30, 2014

Unbelievable

Another unbelievable medical moment for us.

I called back to the pulmonary lab this morning and guess what?  Different people today than yesterday so I just casually said, "I just need to pick up copy of my son's cardiology report.  Could I have that by noon?"

It was that easy.

They didn't have it ready when I got there and when she realized that the doctor hadn't even signed his report yet, she hesitated.  I just prayed and prayed she was too busy to care and turns out she was.

I headed down through the corridor a bit, and read the report.  I didn't want to read it when I got back to the car because the kids were waiting for me.  I needed to buffer my feelings for just a minute.  On the way down there, I felt so terribly ill.  I don't remember a time I was so anxious I literally felt like I was going to be sick.

 I stood in a corner and couldn't even believe what I was reading.

     Aortic Insufficiency
     Mitral regurgitation
     Tricuspid regurgitation with mild elevation of right heart pressure
     Small hole or possible pulmonary AVM
     Enlargement of the right chamber

The cardiologist recommended that we do further testing to better define these abnormalities.  The test Sam will have next is a transesophageal echocardiogram.  They basically have to drop an ultrasound down his throat and into his esophagus to get a better look at the pulmonary arteries and the hole to measure it and pinpoint its exact location.

I don't even know what to think.

We have to wait until our doctor is back in town next week and then try to get in to see both the pulmonologist and get the cardiologist scheduled.  I also need to get feedback from Seattle Children's because they may want their own specialists to weigh in on this.

As I researched just briefly about each one of these issues, they can all lead to excess pressure in the lungs and vision loss because of the strokes.  So, it sounds like the hole isn't our biggest issue and maybe none of this can be fixed!  It's a sobering thought.

My Wasband has a client who is a retired Cardiologist and now teaches at a large University.  He happens to be in town and so he emailed him the reports to see if we need to panic and do something before our doctors are back in town.  Essentially, he said that we have time and really need to do the further testing before anything can be concluded.  Without knowing all of Sam's history, it's really hard for him to say but I was glad to hear that at first glance, nothing seemed life threatening.

He also confirmed that Sam is in fact having mini strokes.

Ask me how unnerving it is to go from not really knowing what caused Sam's vision loss for so long, to now knowing that he is actually having a stroke 'event'.   It's crazy and I'm trying really hard to not get worked up about it!  My mother instinct is also wanting to just make him sit on the couch and not move or raise his heart rate but, I let him go to iJump yesterday and swimming with friends tonight.  Those are huge deals for me...Like HUGE!!

So, we wait.  We wait til next week when the holidays are finally over and people are back to making a living for a change!  Ughhh...

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Patience is a virtue

Patience is a virtue but only to a point.  I try, I really try to be patient but it's the kind of energy you can only keep up for so long and then you...well...you snap!

Today proved to be that moment where my threshold for patience was met.

Sam's test results are sitting the desk of not one, but two doctors; the Cardiologist and the Pulmonologist.  The Pulmonologist has decided to take another week off from work without anyone covering for him so, we won't get results from him til sometime next week.  The Cardiologist who read the tests, won't tell me the results because technically, Sam isn't his patient and he felt the doctor who ordered the test should discuss the options, not him.  I explained the whole situation to several nurses today but they too, were lacking patience and understanding.

I called back to the lab and asked if they would fax me the results.  Nope.  Not going to happen through that avenue either.

So, I got this great idea to call our family doc and have him request the records.  I was really hopeful that would work but I got stuck trying to get through the Berlin Wall of secretaries who think they know what they are talking about but don't.

At first, I just asked to speak to a nurse because I know all the nurses personally.  She wouldn't send me back and insisted on a message.  I insisted it was really confusing but she insisted I tell her.  So, I did.

Just as I thought, she was confused.  Then she started explaining to me that a radiologist reads ultrasounds not cardiologists...

Three times, I tried to explain to her that in this case, it was the actual Cardiologist who will do Sam's surgery if it turns out he needs it, who read the echo studies.  She kept telling me I was confused.

So, in an effort to be patient and not lose my temper.  I just kindly asked her to have a nurse or doctor call me and admitted defeat and stupidity.  What do I know?

I find it so unfair for a doctor to put the fear of death in you by saying that he's 98% sure your kid needs surgery and before the end of the year so he's still around and confirm that he is having mini strokes and then leave for two weeks without anyone covering your patients.   I'm certain he's enjoying his vacation while I am trying so hard to make the best of things and be patient and keep Sam occupied so his mind doesn't wander into the worst case scenarios.  It's really hard!  I try to stay in the moment but I have caught myself wandering into the nethermost reaches of 'What if', several times today.

I almost feel like medicine is nothing more than another big box retailer and human emotions are a thing of the past; something vintage, to be treasured if you ever stumble upon a doctor who truly cares.  Pretty soon, I'm going to be telling my kids stories that begin...I remember when you were little, we had a doctor who actually called me to see how you were doing.

No lie, I got a call while I was at work this morning from a doctor who did blood work on Shelbie December 1.  They were just calling to give me the results that were only suppose to take 24 hours to get.  I had totally forgotten all about that visit and when he said how ridiculously long ago that was,  I just laughed and said, "Really, we are already on to the next big thing.  It's a little late, we already figured that problem out."  Sheesh.

The saving grace for today was that we have some awesome company visiting and new friends.  They have been such a breath of fresh air and the kids have seemed to really enjoy each other.  If it wasn't for them, today would have been that much harder.

Tomorrow, I am thinking of driving down to the lab and requesting a copy of the testing myself.  I'm not so sure they can deny me since I am the mother and I am the one footing the bill for this.  We'll see how I feel in the morning.  It's not that hard to read a test report and if Sam does in fact need surgery then I can at least get on the books with the Cardiologist and spare us another week of waiting.  

How foolish for me to think this could be done by the end of the year!



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Sunday, December 28, 2014

Everyone will get use to it..

I've been doing some research in the areas of Lyme Disease and Lupus for a friend.  In all of my research, I came across and article in the New Yorker Magazine called, "What's wrong with me?"  It's an article written by a lady who has been plagued with autoimmune diseases.  She's pretty candid about her life and her feelings.  I could appreciate and connect with everything she said.

In one paragraph, she quotes a nineteenth century French writer, Alphonse Daudet in regards to his own suffering, "Pain is always new to the sufferer but loses its originality to those around you." and "Everyone will get use to it but me."

Those two statements really struck a chord with me, especially this week.

I have been walking around in a fog, probably due to lack of sleep, stress, worry and poor nutrition.  I have seen it affect me more and more.  Today, I had to go the urgent care because I've been having spasms in my back and neck since Thursday and can't even move my head.  It's pretty painful.  After the doctor, I went to Walgreens to pick up my prescriptions and they asked me to key in my phone number.  I typed in a number and looked at it, it wasn't my number.  I don't know whose number it was.  I typed in another number.  Still not my number.  The clerk said, "Oh, you must have gotten a new number.  It's always hard to remember a new number."

I didn't get a new number.  I just couldn't remember my number.  I turned to Shelbie with a puzzling look and then it popped into my head!  Sheesh!

At the mall on Boxing Day, we ran into some friends.  The husband said something to me and I had no idea what he really said.  I repeated what I thought he said but it wasn't even close!  I felt like an idiot and they stood there awkward and looked at me like I had just made a really bad joke.  I was really too tired to care and they left, probably thinking I'm crazy and inappropriate but really, life has taken a toll.

My brain is running so slow and processing things even slower. I just feel lost.

I feel just like this lady described...everyone will get use to the fact that we are always dealing with something and they think that I am use to it too.  The truth is, I will never be use to it.  It's as hard today as it was 22 years ago.

I think this is how isolation and loneliness happen, people don't get it and my reality is now so far removed from theirs.  I don't have one ounce of energy to make it okay for everyone else.

I was comforted some when I inquired about my brain fog on my support group.  Many mothers admit to the same kinds of problems.  One mother forgot to pick up her kids from school. I totally get that!  It's just too bad we have to keep it all to ourselves.

Yesterday, I ended up with a huge clog in my kitchen sink.  I took all the pipes apart and bought a 20' auger to clean out the drain.  I worked on it for hours and hours!  I could never reach the clog.  At 8pm, I finally called a plumber.  He came right over and it took 50' of auger to get to the clog.  It was where the house plumbing meets up with the city lines!

Weird thing...he had recognized me from 15 years ago when he had heard about my kids being sick.  He asked how they were so I gave him the quick run down.  He said, "How do you even manage?"
"Honestly?  I manage them better than I manage little things like clogged drains."

It's true, its the little things that set me off!  Life is so weird and wild!!


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Saturday, December 27, 2014

Testing...

Well, we made it through Christmas without a hospital trip!  Hooray!

Tuesday, Sam was at one facility getting his tests done and Shelbie was at another about an hour and half away.  So, it was a fun day!

The radiologist doing Sam's echocardiogram and bubble echo was so boring and borderline cranky.  Most radiologists will talk about what they are doing, what you are looking at on the screen, point out anatomy and even say if things 'looked' good.  I know they aren't doctors but surely, they do this day and day out, they have to know what they are looking at so they can flag it, measure it, test it, whatever.  I even asked him if he could tell us if he saw a hole and he said, "Not unless you are Bill Gates."

Whatever.  Lame.

When we left, he spouted something off that was so cryptic, it would take all the intelligence of this country to figure out what it meant!  Not even kidding.  We stood out in the hall analyzing it for several minutes.  If you aren't going to make your hints worthwhile then don't make them.

That had me a little riled up for quite some time.

At Shelbie's appointment, things started out pretty good.  I didn't realize how anxious I would be for the pulmonary function tests.  I thought Sam's was going to be great.  There was no indication during his testing that we would be where we are today.  For Shelbie's test, we had the same lady Sam did.  She said all the same things she said with Sam, "Great!  Totally normal!"

I was on pins and needles.  Shelbie was lightheaded for about 20 minutes after the test finished. I will die if she comes back with the same problems as Sam!  

After that test, we went to the lab for the testing of the genetic disease C-1 Esterase, C4A esterase, and a couple of other tests.  All of them are extremely rare tests.  Here we were in this tiny, county hospital with a list of tests they had never run before.

Be ended up having to wait quite awhile which didn't bother us a bit.  Everyone was so friendly and doing their best to get the details on how to run the tests.

While we sat, a lady came in who did not look well.  She didn't sound well either.  She was there for an Influenza A swab but she sounded like she also had Whooping Cough and Pneumonia.  She sat one chair away from me and coughed, and coughed.  There was a sign beside her which had a great big red title on it, "Coughing Etiquette."

I was getting so panicked, there was sweat beading up on my forehead.  Here we are with kids who have a crappy immune system at best.

Finally, I walked up to the desk and whispered, "We are just going to step out in the hall so you can get us when you are ready." And then I kind of motioned towards the sick lady.  The girl felt so bad.  I felt bad.  I didn't want to offend anyone but seriously, it was crazy!

We left and grabbed a mask and bathed in hand sanitizer.

A few minutes later, a lab tech came out apologize profusely for not being more considerate to get the lady her own room.  I assured her that it wasn't her fault, they were busy trying to get us figured out, they just didn't realize what was going on.

We went back to the lab and they were washing every single surface down with alcohol and bleach!  I was so impressed and so appreciative.

We talked more about all the crud going around and came to the conclusion that my kids will be wearing masks anytime we enter a hospital and depending on the day, other places as well.  I realized we need to be way  more proactive and careful.

In the past month, I have talked with three different nurses who all cautioned about shaking hands and going to church.  They said they are the two biggest threats to our health.  I agree that I hate hand shaking.  In fact, in the winter, I wear gloves to church and all through church.  I don't shake anyone's hand unless it's with the glove on.  I take my own hymn book and only touch my face if totally necessary and then take my hand out of the glove to do so.

It's so frustrating that people come to church either sick or when they have a family member at home sick.  It is my biggest pet peeve.  I also hate the excuses people make for coming to church sick...my favorite..."It's just allergies!"  Allergies?  Really?  in the middle of December?  I doubt it!

I might be getting a bit overly protective but I don't care.

So, tests on Sam should be back Monday and Shelbie not til February!   That's a long time to wait!

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Friday, December 26, 2014

Christmas Day

Christmas day actually felt pretty normal!  No one was in pain, no one was sick, no one was scared, or at least they didn't show it, and Sam didn't lose his vision!  So, all in all it was a great blessing.

We woke up to a foot of snow which was beautiful and made for a lot of shoveling which, call me crazy, I really like to do! Except I wrecked my wrist...so now I look like a dork in a brace.

 Sam got the coat he's been wanting for months and months!  I actually bought it clear back in October when we were in Seattle at the hospital.

 Shelbie got a sign for her bedroom.  It says, 'Don't let yesterday, use up too much of today."

Spencer...Shelbie and Sam figured out how to get all the technology talking to each other so we could see him on the big screen!  So much better than my phone!



Spencer Skyped with us in the afternoon and it was so great to see him.  He has lost a little more weight which I didn't love to see but he is doing fine.  I couldn't wait to hear how Christmas worked out for him after all.  So, I asked him what he actually got...

He said, "Well, I got a collection of Sephora makeup, a red leather clutch purse, a calendar of New Hampshire, some large, red flannel and plaid pajamas that said 'To Andy, love Grandma'. And two pairs of socks, a tie and a CD."

Huh??!!  I don't get it.  What the heck happened?  How the heck did that happen?

Both the Wasband and I sent him socks and ties but we will never know if they are the socks and ties we actually sent and judging from the mix up, I'm guessing they aren't.   Oh well, I guess it made for a host of surprises on Christmas morning.

It was strange to start talking about plans for this coming year.  Spencer has only been in a biking area 6 weeks out of his mission.  He asked the President if there was any way he could be back in a biking zone and the President said, "No."  He is afraid it will make him sick because of the cold weather.  I'm a little relieved to hear that.  I didn't really mind but I did worry about asthma attacks and stuff.  We talked about packing some stuff up and shipping it home, like the bike since he is not going to need it for the next 7 months. We also got to meet his two companions.  They are both really nice and they get along well.

Shelbie and Sam had a great Christmas. We slept in, ate crepes, ate crepes and drank Pepsi!  It was just relaxed and nice to not have to work, check emails, Facebook...pretty much nothing. Just simple.

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Thursday, December 25, 2014

So, this is Christmas

Merry Christmas!

I've always loved the song...And so this is Christmas, and what have you done? Another year over, a new one just begun.

It's a great time to reflect on what you have done all year.  Have you been naughty? Or nice?

Yesterday, Christmas Eve, I didn't exactly reflect on what I had done all year but more about what I was going to do to save the Christmas spirit.

I had to work today.  I started at 6:30 am with a couple of hours of drafting, then headed out to clean two houses and an office building.  Shelbie had a big photo shoot booked for a large family and Sam went with her to help with props and such. They were gone most of the afternoon.

When I finished my cleaning, I went to find May so that I could give her a bag of gifts.  She was at her apartment and when I handed her the bag, she said, "Oh...not fair!  I didn't get you anything!"

"Don't worry!  I wasn't expecting a gift in return.  Really.  I just appreciate your friendship!"
"No, let's go to the dollar store!" She grabbed her big bag with the duct tape handles and we headed down to the parking lot.  She drove her car and I drove mine.

At the dollar store, she walked up and down the aisles until finding the kids and I a perfect gift.  Two puzzles and some smiley stickers!  :)  She picked a few more things she needed and we checked out.

When we got to our cars, she handed me the puzzles and stickers and apologized for not having them wrapped.  She also pulled out this huge bag of play money.  It was the biggest, fake money I have seen.  With a little snicker, she said, "Here, I want you to have some money!"
"Gosh!  I can't take your money!" I said.
"Well, how about we split it?"  She offered.
"Okay."
She opened the package and handed me $124.00 fake dollars!  It was priceless!  I loved it!  She was so happy that I let her do something for us!

I got home just as the kids arrived and they started on the puzzles right away!  It was fun to work on that for a bit.

I am one rich girl! 
While the kids continued puzzle making, I made a gigantic batch of caramel corn.  I put it into large cellophane bags, tied them up with twine and they looked so festive...sorry, no pictures.
We piled into the car and decided to hand them out to total strangers just for fun!  That plan changed quickly.

We passed a student housing complex that was completely dark except for one light.  I thought it would be cool to give a treat to a student who couldn't go home.  We stopped and knocked on his door.  He was the nicest kid!  He was thrilled that we stopped.  We visited with him for a bit and got the scoop on why he couldn't get home.  It was awesome!  After that, we decided to target students stuck here alone.

We drove to every apartment complex for students and if we saw a light, we went up to surprise them with treats.  On each bag, I had taped a picture of Christ.

We spent two hours visiting with so many different people!  It was so much fun!  We were all back to our usual craziness.

The last place we went was an apartment complex for disabled and mentally challenged people.  We knocked on a few doors and handed out the popcorn.  We met a man in a wheelchair and took his garbage out for him.  On our way out, we saw a lady in the hall who had set up a big table that was heaped with books and toys.  She was busy wrapping it all.  We stopped to talk to her and she was helping out a friend who had just had hand surgery.

Clearly, this woman had some physical and mental challenges.  We talked about her cat.  She showed all kinds of pictures from her phone.  The cat was all she had.  I asked her if she needed help getting all the presents wrapped and she was so appreciative!  Using scissors was hard for her and she had a hard time wrestling the paper.  I wrapped gifts while Shelbie and Sam visited and showed her Winston the hedgehog.

It was a great evening!  Exactly what we needed.  We gave out 20 bags of caramel corn.

We didn't get home til nearly 8pm.  We decided for Christmas Eve, to have a 'My Favorite Things' night.  The kids each chose their favorite food and then a favorite movie.  It was kind of random but fun.  We ended up with a French Fry Bar...gravy and french fries being the most important features.
I also made my famous cheese ball.  We were going to have crepes as well but none of us are real big eaters so I will make that for breakfast.

All in all, it was a good day.  Other than all of us being extremely worn out, we enjoyed bringing a little cheer to some awfully lonely people tonight.

So...What have you done this Christmas?
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Monday, December 22, 2014

I don't even know...

What a roller coaster of what nots!



Last night, we ended up in the ER with Shelbie.  Not only was she having her IVIG reaction but she developed the biggest welts and hives all over. I don't have a clue where those came from or why.  We got home at 2am.

Today, Sam was the happiest he has been in months.  I was so grateful because I had to work and after getting only 3 hours of sleep, I just didn't have much energy to give him.

Missionary Monday was today.  We got a letter from Spencer and it was so discouraging.  It was like day and night from his past letters.  He seemed really upset.  I had told him, gently, about Sam because I think he would want the opportunity to pray for his brother.  He said that there are just so many problems with him, the whole mission and our family.  I know the mission has been through some crazy hard times but I thought he was taking it all in stride.  I just want to talk to him now.  I don't have one ounce of patience to wait until Thursday to talk to him.  As for the Christmas presents, he got some of them back, opened and thrown in a box.  He was appreciative for what he received.

Tomorrow, we have a busy day.  We start out bright and early with the final cardiac testing for Sam.  From there, we drive an hour and a half for Shelbie's testing.  Hopefully, we get home early evening.

I have really been handling things pretty well.  I mean, I've been emotional for sure but not frazzled and scared.  Mostly, feeling blessed and overwhelmed with the blessings I have seen.

Tonight, I don't know what happened.  I just seemed to unravel.  It must be days on end of very little sleep.  I know Spencer's letter really upset me.  We have had a ton of stress I guess, when I think about it.  It does seem to be a little more than usual.

I just want a plan.  I want a plan for Sam.  Truth be told, I really want him to have atrial septal defect because if he doesn't have that, then we have bigger problems that can't be fixed like the lung issue, the mini strokes.  Those two issues are way more serious to me than the heart problem.  At least, that is where I am tonight.  Obviously, I don't want the heart problems to be too terribly bad...

Now, I sound like I'm getting ready to place my order at McDonalds...Cheeseburger, no pickles, no onions, extra ketchup, double cheese.

I would like an Atrial Septal Defect please about 1/4 of an inch in diameter, surgery through the aorta, not a broken set of ribs, I would like the lung problems to magically resolve and his vision to never be affected again and...I'll have some fries!

Ugh...I hate days like today.  I hate the back and forth, the rising anxiety, the panic, the not being able to talk to Spencer and find out what is wrong...I hate that my kids have to go through any of this stress.

So today has been an 'I don't even know' and 'I can't even' kind of day!

Tomorrow, I will be back on top of the world.

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Saturday, December 20, 2014

A Broken Christmas

"I just don't have the Christmas spirit." Shelbie said today. "I'm so worn out and tired."

I have worried the past few days, that all these setbacks are going to chase away the Christmas Spirit.

Every year, I work so hard to keep December calm and peaceful.  I have been lucky enough to master that the past several years.  I don't rush around and feel crazy with shopping, parties, baking...all to collapse on Christmas Eve and have it all lay in a heap 12 hours later.

But...I didn't really plan on this chasing away what I work so hard to do.

Maybe all is not lost. We may not be doing the traditional things to get and keep that Christmasy spirit but we are certainly focused on Christ and isn't that what it's all about?

There is nothing more we can do, than pray for resolve.  To trust in a Heavenly Father who surely gives good gifts to His children, is the most Christmasy thing that can be done.  To reflect on the life of Christ, His birth, His mission and His death is the ultimate in Christmas gifts.  To remain focused on Christ will be what saves this Christmas.

It's true, the timing of all this is no fun but it could be worse and when you think about it, the best things in life rarely happen on an ideal time frame.  Even the very birth we celebrate this month was riddled with poor timing.  I can't imagine anything worse than giving birth in a stable, laying on a mound of hay, with animals sharing in the experience.

So, maybe it is a broken Christmas and maybe Deck The Halls and Joy to the World haven't been echoing through the house and we aren't rushing from store to store to wrap things up and there aren't a lot of parties to attend or friends to see, ugly sweaters to wear and maybe I forget to turn on the Christmas tree lights and maybe I didn't even have enough energy to hang up the Pine Wreath on the door, instead just laid it on the planter, and maybe I have no idea what we will do or what we will eat on Christmas Eve but maybe...Just maybe...It's going to be the best Christmas ever...

Because...

I have my kids.  I have the love of my Saviour.  I have hope.

This has been my favorite Christmas song this month...I play it every morning before I start work.

I think God really does like broken things and like one of the lines in this song...To put on Christ til his name feels broken in.  That is exactly what we are trying to do this week, to salvage a broken but sweet Christmas season!


 

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Friday, December 19, 2014

Cracked and Broken

I've been waiting for this moment since May.

I finally broke into the high wall that Sam has been so diligently building all year since he heard the news of his disease.  It was just a crack but enough of a crack to release some pressure...anger and very raw fear!

Sam came up to the hospital after school.  We walked down to the cafeteria and ran into some friends.  Danny works at the hospital as a Respiratory Therapist.  They asked Sam how he was doing and with a grin that spread across his face and eyes as big as the moon, said, " Great!"

"Are you lying?" Lori asked

With a bigger grin, Sam shook his head YES.

We got into it with them because I really wanted his opinion since he does Bubble Echo Studies everyday.  I explained the symptoms and he said something both scary but interesting.

He reminded me that a lot of kids end up dead before they know they have Atrial Septal Defect.  It's the active kids who drop on the football field, or soccer field or playing basketball, who have an issue but never know until it's too late.

With Sam, we are headed in the right direction.  It's a total fluke that we found what seems to be our reality.  He has a chance to get it fixed.  Obviously, he's not done what he came to earth to do.  He is so active with Parkour classes and our nightly visits to the gym.  He pushes himself in crazy ways physically.  It occurred to me that this is actually a blessing...not a trial. Sam could have gone on with these lung and heart issues and just drop one day.

When we got back to Shelbie's room, Sam started asking some questions about the procedure he may have to have.  I answered them the best I could but I really have no idea.  Without warning, he just folded over on himself and sobbed and sobbed.  I was so sad.

I held him tight and just let him cry and shake and wet my shoulder with his pain.

It was a sweet moment of grief.

Then I said, "Sam, I'm so sorry you have to go through this.  It's so hard."

That's when he cracked!

"You- don't- even- know- how hard this is!!!!" He just screamed it in my face.  "It's not happening to YOU!!!!  IS IT??!!"

I sat there for a moment, stunned at the way he had spoken to me but then quietly said, "You're right.  I have no idea."

He is right.  I only know how much it hurts to be watching this unfold for him.  The fear for me is on a different plane, a half step removed.  I feel a different kind of pain.

I was so happy he finally got angry!  He has been keeping so much inside for too long!  If we hadn't of been in the hospital with sick people trying to rest, I would have kept poking him to the point of explosion.  It's healthy.  He needs to get it all out.

At least today, it was a little pressure released.  He's so sad.  The sooner we can get this behind us the better.

It's such a strange place to be caught in.

To know something is a blessing yet feel it's a curse.
To experience peace, yet wring yourself out with anxiety.
To see the hand of God, yet see nothing at all but problems.
To feel trust, yet doubt everything.

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Thursday, December 18, 2014

And Again...

It's been one crazy, messed up week!  Today was just about trying to survive.

I slept only 2.5 hours last night and had a full day of work today, in fact, I just got home!

So, life is interesting.

Well, enough small talk...where to start?

First off, it's been interesting to watch Shelbie and Sam today.  Shelbie has been very protective of Sam.  At our appointment yesterday, as soon as the doctor told us Sam was having mini strokes, Shelbie started crying.  The doctor said, "Why are you boobing?" It sounded kind of harsh at first but it really wasn't.  He was very gentle.  Shelbie told him that is was just too hard to hear that something is wrong with her brother.

Today, twice while they were out, people asked Sam about his heart.  Shelbie jumped in and said that nothing was wrong.  While that isn't entirely true, at all, she did it for Sam.  He has been in a very sad place for about the past 6 months.  Since getting pneumonia, it's gotten even worse.  He has no desire to live.  He doesn't see the point to anything anymore.  Shelbie just didn't want to get into a big discussion about it in front of him because he gets so upset.

Anyways, on to the report about Shelbie from yesterday's appointment.  Again, I was floored at what he discovered, or thinks he discovered.  As if one major problem with one kid isn't enough!

I've mentioned before how Shelbie stops breathing when she sleeps.  I just wanted this doctor to check her asthma and make sure everything is in check.  Well, we brought up the breathing issues and he began to ask a string of questions which seemed completely random and unrelated.  He asked if she gets hives, swelling, edema in her hands and feet...she answered yes to all of these.  These symptoms, in  conjunction with her throat closing up actually amounts to a rare, autosomal genetic disease called C-1 Esterase and C4A Esterase Deficiencies.

He said that what she is describing when she stops breathing is laryngospasms.  The muscles and nerves around her larynx and vocal chords clamp down and she wakes up without being able to take a breath.  It's literally impossible for her to breathe.  She stumbles out of bed and tries to get me or Sam to wake up but she usually collapses before we get to her and by then, she is breathing again but terrified.  

Apparently, all these symptoms go hand in hand and has something to do with a protein deficiency at a cellular level.  I have yet to really do some serious reading about this so don't quote me on this.

We will draw a ton of blood and test for this disease.  I would like to say I doubt she has it but after this week, anything can happen.  There is no treatment and if can sometimes result in sudden death because if the muscles don't stop spasoming and relax, the person essentially suffocates.

Next week, we will go back to the hospital about an hour and half from here and run the same pulmonary function tests that Sam had a few weeks ago.  I'm really hoping we don't have to add this disease to the growing list of problems!  I just hope it's an asthma flare and medications will calm things down.

I can't even put words to this week!  It's the craziest thing I've ever imagined.  Actually, who could imagine a week like this?  I have been completely thrown off my game.

Tomorrow, Shelbie goes in the hospital for her transfusion. I was thinking last Sunday how this will be our last hospital stay for 2014!  Boy was I wrong! Between now and Christmas alone, we will be at one hospital or another every...single...day!   From the day after Christmas til New Years...looks like more of the same.  I have no idea what happened.

Today, I have bounced between not okay and numb.  And then, every so often, I feel panicked about Spencer.  Just pure, unadulterated anxiety!   He has not one clue a thing that has taken place since he left.  When he gets home, he is going to be totally dumbfounded at what his siblings have been through!  I'm so grateful that he is where he is and that angels are lifting him and blessing him daily.  He has never been healthier as he has on his mission.  It's nothing short of miracle.

Maybe I'm wrong in not telling him what we deal with on a daily basis.  When things get really bad, I will sometimes ask him to say a few extra prayers for some 'tough things' that have come up but that's as much detail as I give him!  He just needs to focus on being happy and serving, not worrying about advancing poor health at home.

I sure love my kids.  They are going through some terrifying things but today, you wouldn't know it.  They are trying so hard to be cheerful.

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Wednesday, December 17, 2014

Blindsided

I have really made a concerted effort to be strong.  I have really tried to take everything that happens to us in stride but today, I sort of fell off the proverbial wagon.

Today, we made our pilgrimage down to get Sam's final report from the Pulmonologist.  I was expecting a good report because why would I expect a bad one?  Shelbie was also scheduled to see the doc because she has decided to stop breathing several times a month and it's terrifying and since she has a history of Asthma, I felt it was a good idea to see this guy before he retires next Spring.  He's really great, and after watching him today, feel even more blessed that we got in contact with him again after 15 years!

Anyways, I was so prepared for a good report that we were carrying on like crazies in the waiting room.  It started when a man walked in and made some joke about all three of us sitting there on our phones.  I was sending work emails and Sam and Shelbie were playing games.  We all put our phones down and engaged in some pretty amazing comedy.  We were laughing so hard and the guy who made fun of us was trying really hard to be proper and grumpy but he was totally laughing on the inside, I could tell.

We discovered that Shelbie could control the TV in the waiting room with her PHONE!!  It was awesome, we were messing around with the channels and just hoping we didn't get caught.  In the middle of our immaturity, the cranky nurse from last visit showed up in the waiting room all in a dither!

"Okay, we are going to have to decide how we are going to do this!" she said all out of breath
"Okay, how about we do it the easy way.  Is that an option?  We tend to gravitate towards easy because we don't like hard because we are lazy." I replied.  As a side note, the old guy trying not to laugh was clearly amused now.

Her whole problem was how to deal with two kids from one family seeing the same doctor.

I offered her some advice, "Let's just put us all in one room and he can address them one at a time."
"Well, I guess we can do it that way but the front desk didn't bother getting her to fill out the health history so that's a problem."
"Alright, well, she could fill that out while the doc visits with Sam." I suggested.

We left to our exam room with the nurse all huffing and puffing, the guy in the waiting room chuckling, me rolling my eyes at him and the other two laughing and tripping down the hall.  It started out as a great appointment with just the right amount of fun and humor.

That quickly changed when the bad news hit from out of nowhere!

All of Sam's pulmonary function tests were totally normal.  Excellent.  No signs of pulmonary fibrosis which is a huge relief since that is deadly for kids with Dyskeratosis Congenita.

Now the bad news!

Sam's lung diffusion numbers were more than double what is normal.  Over 200%.  This is bad.  98% of the time, this means there is an Atrial Septal Defect in his heart.  I seriously didn't know how to react.

It was the most disconnected moment ever!  I saw Sam's face fill with the most bitter devastation.  Shelbie's eyes welled up with tears and I was somewhere back in the waiting room laughing at nothing but everything and wanting to shrivel into a ball of surrender.  It was surreal; unreal!  At one point, I felt their eyes piercing through me as if to scream...MOM!  Do something! But at the same time, those same eyes were completely empty in disbelief at what was happening.  Empty and needed me to fill them with something to make it okay.

I asked him if this possibly had anything to do with his extremely low heart rate, 40 to be exact and high blood pressure.  I had also heard that people with heart defects can be prone to migraines and wondered if Sam's vision loss could be attributed to this.  He said the migraines weren't likely.  He asked Sam more about his vision loss and when he was through, the doctor said, "What happens with ASD is the blood is not directed anywhere and just goes where it wants and as a result, the platelets clump together and instead of being diffused in the lungs, it goes to the brain and causes a blockage in the arteries.  He's probably having mini strokes."

What??? Mini strokes!  It makes total sense! But not my Sam!  One day when Sam was just 5 months old flooded back to my memory.

Shelbie had been at Primary Children's, she was 6 years old.  Her platelets were at 1.  We were being prepared for the worst case scenario.  Sam had an appointment with a Cardiologist because of 4 heart murmurs.  We rushed from Primary's back home to make it in time for Sam to see the Cardiologist.  I clearly remember sitting in that waiting room, exhausted.  Shelbie was fragile and at high risk for hemorrhaging,  Sam was fussy and screaming and I couldn't stop crying.  All I remember about that appointment was the doctor saying there was possibly a problem with his heart.  A week after that, we were robbed, homeless and we were a mess.  I never followed up on that Cardiac appointment.

Whenever Sam had a check up, some doctors would mention a murmur, some would not.  I just ignored it.  

I won't get into Shelbie's problems now but she has many as well!

It was such an overwhelming day!

We left after having a million more tests lined up and hopefully surgery before the end of the year because remember...I only have basic Medicaid for Sam come January 1.  Don't quote me but I'm pretty sure basic medicaid doesn't cover heart surgery!  Just sayin', I was lost in my own head.

I had to run to TJ Maxx to pick up one last Christmas gift.  Shelbie and Sam left to look at other things and I felt the anxiety of it all rushing towards me.  I watched it gain momentum and crash into me.  I had to sit down.  It took everything I had to not break down into a puddle of tears.  I'm so tired. It's been such a hard year.  We have to finish with hard?

I knew I had to get up.  I knew I had to find a way to carry on.  Sam and Shelbie needed me to. If I get upset, they get more upset.

I don't know what is going to happen.  There is a 2% chance the excess pressure in Sam's lungs is his abnormal, normal.  I'm just having such a hard time holding on to that number!   I can't imagine what will happen to me financially if he needs surgery and we can't get it now while I have good insurance.

There are so many variables.  It's hard to stay in this very moment!  We have to though.  We have no choice but to be strong.  


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Monday, December 15, 2014

My Favorite Doctor

This year has not been our year for doctors up until now!  We have had a rough go of it with our team of docs.  They are burnt out on us which is so unfortunate because we really need their help.

Just last night, I read an article a doctor friend posted about the burn out rate of Doctors and what a hassle it is being a doctor.  I agree, that like all professions, there is a degree of hassle that comes with the job.  But, I still believe that you can either get sucked  into the fray and complain and get burnt out, or you can remember why you chose the profession in the first place and just worry about your patients and let the other things take care of themselves.  They will, they always do.

Back in September, I had the prompting to write a letter to one of our early doctors.  He was an amazing Doctor.  I had never had one quite like him before and have never experienced that since.  His name was Dr. Rammell.  He is amazing, just so happens he isn't our doctor anymore.  So, I wrote him via Linked In and told him that after 22 years of head scratching, they found the gene that was causing all the kids problems.  I thanked him for being the one to start out us out on this road and literally held my hand through the early years when the kids were so sick.

We met Dr. Rammell on a very warm August afternoon.

Shelbie was two years old. and I was 6 weeks from delivering Spencer.  I was a Relief Society President at the time and was out at a house, clear out in the country, for an afternoon of quilt tying for a needy family.  I was busy working and visiting and Shelbie was running around in the yard, having a great time with the other kids.  She came in to grab a drink and a sandwich.  I took a break and helped her get some food.  She took a bite of her sandwich and almost immediately, fell backwards in my arms.  I had to catch her before her head hit the ground.  It was a force so strong, I nearly fell on top of her.

I swooped her back up and scolded her for being rough when she was sitting on my big, pregnant belly.  Mid scold, I realized that she was as blue as blue can be and her eyes were rolled back in head.  Bits of soggy bread fell from her drooping mouth. I shook her, and screamed at her to look at me.  She was unresponsive.  I fell to the ground, cleared her mouth of food and started CPR.  She wasn't breathing and her heart rate was barely noticeable.

"Call 911!" I cried out.  It seemed like nobody had noticed what was happening.  I screamed for help again and again.  I couldn't figure out why nobody was moving.  15 people were literally 4' away and no one seemed to hear me! No one seemed to move.

Finally, an older lady who was my dear friend rushed to my side and told someone to go get her husband.  He ran in from the garden, grabbed Shelbie, who I was sure had died by now and started doing CPR.  I ran for the phone and dialed 911 and just screamed.  I don't think an audible word came out of my mouth.  I just screamed.

So, long story short...Dr. Rammell was the ER doc who took care of Shelbie and me.  I was having contractions and not doing well.  After everything calmed down and Shelbie was stable, I asked him if he would be our doctor when Spencer was born and that's how we met.

When Spencer was born, he had a condition called Laryngomalacia.  His larynx and windpipe were not developed properly and he continually gasped for air and quit breathing.  In the first two weeks of Spencer's life, he had been in the ER 3 times.  Doctors there kept telling me he had croup.  I knew it wasn't croup.  I recorded the sounds and took the recording to Dr. Rammell.  Within 5 minutes, he was diagnosed and we were sent out the door packing for an emergency drive to Primary Children's Hospital.

When Spencer was 9 years old, he began having a series of horrible seizures.  One right after the other.  This went on for a couple of days.  After one long seizure that happened in the car, I raced to the ER.  When Dr. Rammell arrived, he said we needed to do a spinal tap since he feared that Spencer had Meningitis.  The only problem was, he didn't want to do it.  He hadn't done one before and he didn't feel comfortable.

I remember as clear as can be that moment when I took his hand and told him through the tears of a mother, that he could do it, that I would be praying for him. I know he was nervous.  He went in the room where Spencer laid in a drug induced coma, and closed the door.  From around the corner, I could see through the window, into the window of where the procedure was taking place.  The mirror on the wall reflected both Spencer's face and Dr. Rammells.  I stood there shaking like I have never shook before and prayed, like I have never prayed before.  I watched the sweat drip down Dr. Rammell's face as he took care of Spencer so carefully and gently.  I could see him talking to Spencer, probably sharing calming thoughts with him.  I knew that Dr. Rammell was filled with the Spirit.  Within just a couple of hours, Spencer was life flighted to Boise where he stayed for two weeks with Encephalitis.  Three people that week were diagnosed with Encephalitis.  Two of those three people died that week.

Dr. Rammell never gave up on us and always treated us with so much love and respect.  I just really wanted him to know the difference he made in our lives after all we had been through.

Shortly after Sam was born, Dr. Rammell closed his practice and just worked the ER.  Now, he no long does ER work but is one of the providers at the University.  I miss him so much!

I never heard back from him after I wrote the letter to him in September.

Just last night...before I went to bed, I checked my email and there was a letter from Dr. Rammell!! I was so happy!  He was so kind.

Dear Kathy, 

I don't believe I have checked into Linkedin since September so I just barely read your letter. Thank you for letting me know about the last few months; I am so sorry at the devastating news and diagnosis. You and your children have been through so much, and through it all you have been there for them. I have always been impressed at your devotion and love for your children. You are a very talented woman but you have always put them first and foremost. This life is full of so much - tragedy, triumph, pain, joy, suffering, beauty, ugliness, mystery, wonder, etc. but in the end - love emerges. I love you and your family and as a physician I only wish I had a cure and could heal. In your circumstance, the fact is there is only the loving arms of the Savior that can truly heal. Maybe not a cure, but healing of the soul and heart. Ruth most definitely remembers you (even though she might not have recognized you at the store). You and your family will always have a special place in my heart and you all shall forever be in our prayers. Do not be so shy next time paths cross... 
Sincerely, 
Corey

He is one of those people who left their fingerprints on my heart!  
Dr. Rammell is proof that a little love goes a long ways! 
 
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Sunday, December 14, 2014

It's just a game

Tomorrow is the deadline for getting my health insurance on the exchange.

I've been trying to get this decided for the past 4 days, but my log in information isn't working.  I get an error message that says 'Authentication Failed'.  I finally called their help line.  After being on 'hold' for a total of 8.5 hours, longer if you count the time I had to wait overnight since they closed before it was my turn in the wait line, it was a lot longer.

I've come to the conclusion that dealing with the government is just a big game of Hide and Go Seek.  If you approach them with a fun and playful attitude, it really helps your mental stability.  Instead of wanting to go postal on them, you learn to just laugh.

For instance...The first person I talked to about the log in problem said, "Well, our website is having problems.  We will get it fixed and then everything will be fine."  Oh...Okay, the website is down!  of course it is!  Of course it wouldn't work the week of the deadline for getting insurance.  Makes total sense.

The next person I talked to about the problem said, "Well, it's because the link you are using expires after 48 hours."
"Oh...that's fun, because the email said the link was good until February 2015 but what you really meant was 48 hours!  That's so funny...I totally fell for the 2015 line!"  (Yes, I said this...literally, word for word...because as I said, you just have to approach these matters like it's a fun game wherein the rules change continually!)  Then I said, "Okay, so do you think you might be able to send me another link that is good for another 48 hours and expires in March?"
"No, I can't." She said, "That's not my department.  Here is the number you can call for that department."
"Super Duper...that's great!  Thanks so much."

I called the next player in this game of 'hide and seek for your health insurance' and they said my hold time was only 5.5 hours!  What a deal.  Sure enough, 5.5 hours later, someone called me.

This person had some exciting news!  The real problem wasn't the website or my link, it was that I needed to clear my cache and eat some cookies...or maybe it was hide my cache and share my cookies...I don't really know exactly.  It was something about my cache...which they were already taking from me and my cookies.  Don't try to take my cookies please!!!  You can have my cache, leave the cookies alone!  In times like these, it helps to have a snack, a little comfort food.

Anyhoo...she went on to some lengthy instructions about what to do to access the website.  It was no less than 8 steps!  8 confusing steps.

"Oh..." I said, "I was under the impression that I could just log in.  I didn't realize there were these hidden steps.  Secret combinations to get in to the government website.  That's so fun.  I love a good game!!"  (Yes...I said that too! To her face through the phone.)

In reply she said, "Okay, do it now."
"I can't.  I am not at my computer."
"Okay, I will call you back in three hours to make sure you did it."
"Alright you do that."  I wasn't even home. I knew I wouldn't be home but I just thought she might like to be part of the phone game.

Low and behold, I forgot all about it.  Until...Saturday night!  I got a call..."Did you do it?"
"Did I do what?"
"This is the exchange, did you do what I told you to do?"
"No.  I really am not smart enough for all those steps."
"Oh well, that's fine.  That wouldn't have solved your problem anyways.  We just sent you a new link.  It will work now."

The past three days have been so much fun.  I can't even remember when I had so much fun. Excitement.  Mystery.  I hope I can do it again soon!


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Saturday, December 13, 2014

Selfish

I'm sure you've heard me talk about my friend who has been homeless for over 25 years!

She has been without a car for 9 months now and back in town for about 3 months.  I have so enjoyed the past few weeks being able to spend more time with her.  Since she doesn't have a car, it's much easier to keep track of her and take care of her.

The double wide trailer was her home for a bit but last week, she was able to get an apartment that is subsidized by the government.  It's an okay place.  I've been going to visit her several times a week just to make sure she is doing okay and doesn't need anything.  On the weekends, I spend most the day Saturday with her.

Last weekend, we spent a couple of hours trying to find her a car.  I had mixed feelings about doing this.  For one thing, she doesn't have a valid driver's license and she is somewhat of a hazard on the road due to her hoarding disorder.  She has things piled to the roof that she can't see out of her windows.  Despite my hesitation, we looked and I continued to look this week.

Last Saturday, as I drove her home, I said, "Home Sweet Home."  She did not like that comment.  In fact, it upset her.  All she really wants is a car.  Living in a car is really all she's ever known.  A car is home to her. I should have respected that from the beginning.

Today, we were going to go out again and re-visit a van we saw last weekend.  After car shopping, we had made plans to go out for dinner.  She called me earlier to excitedly announce that she decided to buy the van we saw last week.  She had already paid for it  and was sitting in her parking lot of the apartment reading the owners manual.

I was expecting to share in her excitement but that was much harder than I thought it would be.  Having a car means she will leave again.  I have really grown to love and appreciate her.  She has a great sense of humor and tells the best stories from her life. I look forward to making her meals and keeping her company. She's not caught up in the things of the world.  She has nothing of worth or value and she doesn't care.  She's escaped the complications of 1st world living.  And best of all, she never says anything mean, hurtful or condescending to me.  I don't have to pretend to be someone I'm not comfortable being.

When she called me to tell me about the van, I asked her if she would stay through Christmas.  She said she would.  I told her that I considered her to be one of my best friends and if she left, I would like it very much if she would stay in contact with me so I know where she is and that she is safe.  She said she would.  She told me she hasn't had any friends like me either!  That felt great.

I know I need to let her live the life she is happy living but boy, I wish it was here.  Sometimes, I have a literal reaction when I think about her being alone.   Oh well.  Here's to friends!


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Thursday, December 11, 2014

Christmas Carols that aren't

I've been doing a lot of Christmas music listening.  I spend so much time at the computer, I need something to keep my groove going so I turn on Pandora.  This time of year, I'm obviously hitting up the Christmas stations.  Every year, I hear the same old songs that are trying to pass themselves off as Christmas tunes.  Just because a song mentions snow, or Christmas doesn't mean it's a Christmas carol.  Here are my top 5 songs that shouldn't be played at Christmas.

Frozen...Anything from Frozen.  The movie has nothing to do with Christmas.  Just because they sing about building a snowman and fractals of whatever, doesn't mean we should add that to the repertoire.  Unless you are my favorite little 3 year old, I don't want to hear that song anymore.

It's The Most Wonderful Time of The Year-  Okay, this song isn't bad but what's up with the line, 'Scary Ghost Stories'?  And who roasts marshmallows in December, on Christmas? I would like to meet one family who sits around on Christmas telling ghost stories while roasting marshmallows.  I think Andy Williams just ran out of rhyming words by the time he got to the chorus.

Last Christmas-  This song drives me crazy!  'Last Christmas, I gave you my heart but the very next day, you gave it away.  This year, to save me from tears, I'll give it to someone special.'  The song is a sad tale of desperation that should probably be played on the late night, love song tributes John Tesh attempts to do.

I Saw Mommy Kissing Santa Claus- This is just plain traumatic to a kid who still believes in the big guy.  It's totally giving Santa a bad rap.  Santa is suppose to just sneak in, spy on you to see if you're sleeping or if you're awake, (which is also a bit creepy but somehow, we grew up accepting this truth), leave the bag of goods and head out!  Not stand around kissing your mom! It's not right.

Grandma Got Run Over By A Reindeer- Who wrote this song??  This grandma deserved to get run over.  She was clearly a drunk and mixing medication with alcohol is just asking for trouble.  You know if you are a bit tipsy, you don't stand a chance against 8 reindeer who fly.  You just don't. There is nothing joyful or Christmasy about this song.

Grandma Got Run Over
By A Reindeer

Grandma got run over by a reindeer
Walking home from our house Christmas eve
You can say there's no such thing as Santa
But as for me and Grandpa, we believe

She'd been drinkin' too much egg nog
And we'd begged her not to go
But she'd left her medication
So she stumbled out the door into the snow

When they found her Christmas mornin'
At the scene of the attack
There were hoof prints on her forehead
And incriminatin' Claus marks on her back

Grandma got run over by a reindeer
Walkin' home from our house Christmas eve
You can say there's no such thing as Santa
But as for me and Grandpa, we believe

Now were all so proud of Grandpa
He's been takin' this so well
See him in there watchin' football
Drinkin' beer and playin' cards with cousin Belle

It's not Christmas without Grandma
All the family's dressed in black
And we just can't help but wonder
Should we open up her gifts or send them back?

Grandma got run over by a reindeer
Walkin' home from our house Christmas eve
You can say there's no such thing as Santa
But as for me and Grandpa, we believe

Now the goose is on the table
And the pudding made of pig
And a blue and silver candle
That would just have matched the hair in Grandma's wig

I've warned all my friends and neighbors
Better watch out for yourselves
They should never give a license
To a man who drives a sleigh and plays with elves

Grandma got run over by a reindeer
Walkin' home from our house, Christmas eve
You can say there's no such thing as Santa
But as for me and Grandpa, we believe!

 I have a few more on my list of songs I can't stand but rather than go on, I will leave you with one bonus song.  The goofiest song of all...12 Days of Christmas!  This song is so annoying but I love it. There are so many different versions of this song but this one is my favorite!


 

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Monday, December 8, 2014

Kept by God

In keeping with our tradition of being weird and strange...it was another very weird day.

I received an email this morning from the Mission Office where Spencer is serving and someone broke in over the weekend and stole and vandalized and opened the majority of Christmas gifts that had been sent by families of the Sisters and Elders serving.  They assume the robbers were looking for money, gift cards and valuable items.  They asked each family to call and report what they had sent and the color of wrapping paper it was in.

When I saw that I cried and cried and cried.  I worked so hard on a book I made for him.  I'm not really sure exactly why I was so upset.  I'm not the type to get attached to anything, especially stuff you can buy in a store.  And, it's not like I sent him a nice gift like a GoPro or anything like that.  I think I have just been so tired this year and it's kind of been a series of unfortunate events lately, I was just struck with feelings of overwhelm.  It was like the last straw.

I feel bad for overreacting and not taking an hour or so to realize that this is not a big deal.  I think I've become a reactor since being a mom.  I can literally pinpoint the first time I was traumatized by something big and I'm pretty sure it rewired my brain to always be on high alert and quick to respond.
The Mission President also asking me to identify what I bought for him and the paper I wrapped it in was also a problem.  I bought Spencer's gifts over a month ago and had a hard time remembering what I had sent.  Another side effect of living the life of chronic illness.  I just don't remember things like I use to.  I can't afford to hold on to menial things with so much going on.   Thank goodness, I had a picture of the wrapped gifts I could send.

Here's a little funny part I'll interject here...cause you can never have too much funny...right?

I didn't wrap his presents in Christmas wrap!!!  They are green and white polka dot!  Ha ha...when I told the mission secretary, she started laughing.  I did too.  I was actually a little embarrassed that they weren't looking more festive but then she said,  "Well, if they are still here and still wrapped, we won't have a hard time finding them among all the other Christmas paper!"




I feel like I need to explain.  Every Christmas, I buy a huge roll of generic paper so that I can use it for Christmas and then throughout the whole next year.  It's being thrifty and creative and I hate having a hundred rolls of wrapping paper falling out of the closet.  I thought the red and white striped butcher twine added a festive touch!

Anyways, once I settled back down to reality, I thought what a perfect lesson this is for our family.  Spencer has been so excited about the new Christmas video the church has published called, He is the Gift.  He even said a week ago that for his Christmas present, he wanted me to post that video on my FB wall, which I did.   For Spencer, I know that he knows that Jesus is the gift and that is enough.

I called the mission home back and emailed them as well and let them know that whatever gifts, if any, they are able to recover for Spencer, I want them to give them away to other missionaries that are in need.  I know that Spencer would want this and I want this.

I feel like this is just another postcard from Heaven.  Another reminder that it's not enough to say I believe that Jesus is the gift, I have to live that. In the grand scheme of things, it's all just stuff that Spencer would more than likely give away anyhow.  He always gives his stuff away and I'm proud of him for that!  He learned something growing up in this family!!

Last Christmas, I bought him a beautiful new, wool pea coat that cost quite a bit of money.  I also bought a really cheap overcoat from China for $8 I thought he could use for service projects in the cold weather when he might get dirty.  Well, he gave his companion, who didn't have a coat at all, the really nice pea coat and kept the $8 coat for himself.  He's been wearing it ever since I guess, I've never heard him complain that he was cold.

I also remembered when we were robbed in 1998.  We had everything we owned in a storage unit because we were in between houses and living in my parent's motor home.  Shelbie had been at Primary Children's with a platelet count of 1, Sam was only 5 months old and it was getting cold and snowing.  I went to our storage unit to get the kids winter coats and discovered that someone had cut the lock off and took all but a couple pick up trucks loads of stuff.  At first I was devastated but I learned a lesson I knew I would never forget!

I swore I would never be attached to my stuff ever again!! And, I'm really not.  My house reflects just simple, stuff and if it got all cleaned out today by a robber,  I wouldn't even care! None of it worth much, especially to me.

So, it's been a humbling day.  Another lesson learned.  I'm not special, or extra-ordinary...just trying to do what's right, one hard thing at a time.  We have some crazy things happen to us but like the quote on Spencer's book says:

Our Family is a ...circle of strength, founded on faith, joined in love and kept by God.
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Saturday, December 6, 2014

We need a little Christmas

Tonight, starting my 6th job for the day, I decided to turn on Pandora, to the Pentatonix Holiday station, ya know, get a little Christmas  cheer going despite this hard kind of week.

I listened to the usual Christmas line up; I'll be home for Christmas, Mary's Lullaby, The first noel.  There were some contemporary tunes mixed in too.  Each note gently dropped a little memory of past Christmas experiences into the front of my mind.  I remembered all the ways we have been blessed.

Yesterday, while sitting at the hospital with Sam, the Wasband and I were discussing the insurance problem.  Shelbie and Sam were both there.  At one point, the conversation got a little emotional because it's just so overwhelming. It's big!  So many things are just big.  There aren't a lot of opportunities to talk with him face to face about our situation so this seemed as good as any.

Neither of us realized the impact this would have on our kids listening.  Eventually, Shelbie started crying and apologized for being a burden and a problem.  Oh man...who knew a broken heart could break anymore?

We both quickly corrected her perspective. Her and Sam just went off on a tirade about how nothing works out for us and everything is hard. I was frustrated too but somewhere, I found the wherewithal to ask them the most important question...

"Name one time, in the past 10 years that we have struggled since I got divorced, when God didn't show up; when we just fell flat on our face?  Just one...one time it didn't work out in the end?  Name one time you had to go without?"

Tick...Tock...the clock kept ticking away and neither one could come up with one time when it didn't work out.  Albeit, it didn't work out until the very, very last millisecond but it worked out.

"You think God isn't here.  You think He is the one creating all this trouble or at best, allowing it.  Maybe he is but it doesn't matter.  Either way, we signed up for a test and the test isn't done yet. Some days, we may feel less prepared and guess at the answers but we still end up passing.  This is going to be no different.  No one is a burden.  You are all blessings!  Every thought, every action, every decision and every sacrifice is made in the love I have for you.  There is sense in all this suffering and somewhere, sometime, we will see the blessings."

I think they were okay after that.  I thought about how today, Shelbie reached out on Facebook to try to see if anyone had an old car for sale that we could get for our dear homeless friend.  She will ultimately buy it, but she has no idea where to look.  We were just trying to facilitate that.  She was moved and touched by the kindness shown by total strangers for a daughter of God.  For today, she forgot about her own discomforts in life and that was a blessing.  A little postcard from Heaven that God is here, here in our very home!

My thoughts were stalled a little when Pandora started playing I Know That My Redeemer Lives on a Contemporary Christmas Station.  Never before had I considered that to be a Christmas song.  As I listened to the words, I was reminded of the lesson I learned the night before...Believe in God.

What better time of the year to be reminded daily that God is in his Heaven, He is in our home.  So blessed to have felt the spirit today in so many ways...Forget about the weary world...It calmed this weary mom!  It was just the right amount of Christmas we needed today!


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Friday, December 5, 2014

Dollars will fix your problem

Yesterday, I had a government worker ask me if I could make $10,000 before the end of the year.  Of course, how hard can that be?  Why haven't I thought of that before now?  Sure, I'm not doing anything between the hours of midnight and 5 am but lounging around, it would be a perfect time to get a job.  Another job. One of many jobs.

I think that's a perfectly great idea because you can never tell your kids too much, "I can't, I have to work."  They love hearing those words.  It makes them feel so special and important, and cared for.

Basically, this notion of making more money, came after a lengthy conversation with one of the chimps up the chain of command at Health and Welfare.  They should really change the name of that company to  Planning Your Demise.

I knew when the Government said, "If you like your plan, you can keep your plan." it was just blowing smoke.  I knew they didn't really mean it.  It's like telling the clerk at Maverick, "Have a nice day."  You don't really mean it, or stop to consider what that really means, it's just what people say.  The Government doesn't mean anything they say, it's just how it is.  A tradition passed down from one lousy, self centered, power hungry President to the next.

What I didn't know was that for some Americans, the Government actually decides on the new health insurance plan for you!  And, believe me when I tell you, they don't give a hoot about you, what your health status is, they only look at one thing...money.

The Government has arbitrarily given two of my kids a Medicaid plan.  Not a great, awesome Medicaid plan, just a basic Medicaid plan that covers a sore throat here and there and some wellness check ups. They don't care that my kids have a terminal genetic disease that will most likely result in bone marrow transplant and numerous cancer treatments before they reach age 30.

They don't care how you spell Dyskeratosis Congenita or Primary Immune Deficiency.  They don't care what that means or how it affects my kids personally, physically, emotionally or financially. They don't care that we have the hardest time finding doctors who will stick it out in the game of rare genetic disease without getting frustrated and overwhelmed. They don't care that some of these doctors won't accept Medicaid. They don't care that we HAVE to travel hundreds of miles to talk to a doctor with the knowledge to help us.

Do you think before they decided what was best for us, they considered any of this?  No.  They didn't.
So, here's the problem.  Medicaid will not cover all of our expenses in 2015 so I will invariably be hit with huge out of pocket expenses due to lack of coverage.  With the good insurance I already have, I still end up paying some, for the things they don't cover.  Now, we will have far greater deficiencies in coverage.

All I want is to be able to add a secondary policy so that we are totally covered but according to the new Affordable Care Act, I can't do that because the Government has already so generously provided me with insurance they deem is just perfect for us.

If I deny the Medicaid coverage, I can find a suitable policy elsewhere but I will be fined for each child, I will not be eligible for any tax breaks, benefits and I can't even write off any medical expenses on my yearly taxes.  Each child will have their own premium, of estimates close to $1000 and their own individual deductible in the thousands of dollars.

If I keep the Medicaid as it is written, we plain and simple don't have enough coverage.  I asked the guy if Medicaid was prepared to pay for monthly transfusions to the tune of $12,000 a month?  Were they going to cover monthly ER visits for one thing or another?  He actually knew the answer to that...NO!  Medicaid covers 3 ER visits a year!!!  We've had 3 this month!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (I exclaimed!) I asked them if they were going to cover bone marrow transplant, chemotherapy and host of other possibilities.  "These are kids," he said, "It's not likely you will need that."  OMG...doesn't anyone listen to me??

I asked Health and Welfare if they could supply me with a policy of what the coverage will actually be.  Their response, "Well, I'm not sure that really exists.  It might, I'm sure it does, I guess, but it's buried somewhere on the internet.  You'd have to do some extensive Google searches to find it."

REALLY PEOPLE??  You make me take your stupid policy but you won't even tell me what it covers?  Is that honest?  Can you do that?  SERIOUSLY???  They can do this???

I'm not joking when I tell you, I had heart palpitations!  I don't have the money to support either of these options.  I am working as hard as I possibly can.  I have a son on a mission and two kids at home that have been sick all the time!!!  This week alone, I have worked  already 45 hours and spent over 25 hours at the hospital.  Taking care of my kids is a part time job that takes me outside of the house, then consider all the care that is required when we aren't at doctors and hospitals.  I'm tired!! I am so tired in every imaginable way, I am tired.

Last night, while I cleaned an office building, scraping gum off the floor, I just simply asked my Father in Heaven what I was suppose to do.  How this could possibly work out. If I need to move, I'll move.  If I need to find a different job, I'll find a different job.  I just want my kids to be taken care of and it would be really nice if I could spend what time they have left, not gone every minute trying to pay for medical bills.  I would really just love to be a mom!   This prayer of wisdom and understanding just kept looping through my mind.

I dragged the last of the many garbage bags to the dumpster and got in my car.  I turned on the ignition and these simple words blasted through the speakers from the radio...

"Believe in God." He said them slowly and purposefully.  The speaker went on to quote, Mosiah 4:9, from the Book of Mormon.  "Believe in God; believe that he is, and that he created all things, both in Heaven and in earth; believe that he has all wisdom, and all power, both in heaven and in earth; believe that man doth not comprehend all things which the Lord can comprehend."

My heart finally slowed down and I knew that this was my answer.  I can't change the government and I can't get out of this situation.  All I can do at this point is move forward with faith, hoping that somehow, everything will work out. I don't fully understand how.  It seems absolutely impossible.  It's the most ridiculous situation I have ever been in.  Never before have I experienced such a deliberate loss of freedom.

The guy at Health and Welfare was wrong...Dollars won't fix my problems but God will.

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Wednesday, December 3, 2014

Bone Marrow Biopsy Results

Bone Marrow Biopsy reports are in...I had to hunt them down because our doctor still hasn't called to tell me the results.  I really don't have the energy to deal with him.  He is apparently really busy and we aren't a big priority or something, so whatever.  I don't care anymore.

The report was a mixed bag really.

His cellularity is stable from last year, which means about the same amount of his marrow is functioning as last year so no loss there which is great.

They stated that in light of his condition, it appears that aplasia or aplastic anemia has begun.

There are no increases in Blasts, which are the early signs of leukemia

He continues to show signs of Neutropenia but now Leukopenia...so, another cell in the white blood cells starts to bite the dust.  That must be why he has had an increase in viruses and infections the past few months.

Finally, he had Megakaryocytes show up with unusual morphology. That can be a marker for Myelodysplasia.   They are coming out of his marrow hypoloblated and misshapen.

This is not something we want to see...EVER.

At this point, I'm not entirely sure what to think about this.  The abnormal megakaryocytes are worrisome but to what extent I just can't be sure since I'm not a doctor and can't seem to find a good one these days.  I texted by best friend after I read the results and she said it was surprising how calm I was and that after dealing with these this long, I probably don't jump to conclusions as much.

I confirmed that my 'high jump' to conclusions is still alive an well...for some reason today, I'm just not in the mood to jump.

I will email these to our trusty team in Seattle and see what they say.  I wouldn't be at all surprised if we headed back into the OR Suite in 6 months to re-do the test just to make sure this isn't our newest trend.

More waiting...

In pneumonia news, Sam is doing better today!  I think he turned that proverbial corner last night.  His fever broke last night and he doesn't seem as tight today.  I am going to take him to our family doctor on Friday for a repeat blood test and chest x-ray just to be sure we got it all.  His last day for IV therapy will be Friday if all seems well.
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Tuesday, December 2, 2014

Bleh...

Shouldn't pneumonia start getting better after three days of IV antibiotics?  One would think.

I guess, considering his poorly functioning marrow and the rock bottom blood counts, it's going to take a little longer than the average person but today he is worse.  Much worse!

Makes me sad.  I made a joke on FB that I was waiting on him hand and foot but then said, 'Not really, I'm not that compassionate."  The truth is, I am trying to wait on him hand and foot but he suggests I find a hobby that doesn't involve taking care of him!

I hate to see him so uncomfortable so any little thing I can do, I want to do.

He is in more pain.  His cough isn't productive anymore, just tight and dry.  He still has a fever off and on.  His heart rate is still elevated as well as his blood pressure.  He has a lot of GI distress already from the antibiotics and I fear the C-diff has already started.  I can't be sure but I think.  I hope I am pleasantly surprised and we can avoid another bout of that!  If he gets C-diff he will surely be off school for the entire month of December!

 He has no appetite, no desire to drink.  When we left the hospital, he just shivered and shook all the way home and once home, he fell on the sofa in a twisted sort of way and didn't move.  Just shivered. When we got home from the hospital today, I made him his favorite lunch, Mac and Cheese.  He ate 2 bites and dumped the rest.

I really hope he turns a corner tomorrow.   By then, it will be 7 days of this.

Tonight, we are going to get him into a steam room and see if we can loosen things up.  I find it odd that the doctor didn't even prescribe steroids,  cough syrup, nothing...nothing to help keep him comfortable.

For now, I guess we just stay the course.  It's a good week to slow down.

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Monday, December 1, 2014

The Story of Sam

Sam has pneumonia.

Sam said last Thursday, "Mom, I don't feel good.  I need to go to the hospital, I have pneumonia."
Mother said, "No, Sam, you do not have pneumonia, you have a bad cold like me.  Just try to enjoy Thanksgiving with your dad."

Sam said last Friday, "Mom, I don't feel good.  I need to go to the hospital, I have pneumonia."
Mother said, "No Sam, it's just a sore throat and congestion, not pneumonia.  Go have fun at the hot springs.  The mineral water will do you some good."

Sam said, last Saturday, "Mom, I don't feel good.  I need to go to the hospital, I have pneumonia."
Mother said, "No Sam, I'm sure you don't have pneumonia, maybe bronchitis, not pneumonia.  If you aren't better by Monday, we will take you to the doctor."  So, he laid there, quarantined by himself while everyone else went out for the day to have fun.

Sam said, last Sunday...nothing.  He just laid there, quarantined all by himself with a continuing fever of 102, resigned to the fact that he didn't have pneumonia.
Mother said, "Sam, you're sick.  You've had a fever of 102 since Thursday, we better go to the hospital."

Off to the hospital they went.  The nurse looked at him, sure, didn't look too bad.  The doctor looked at him, sure didn't look too bad.  They ran some tests.  Shot some x-rays.

A couple of hours later, after a liter of fluids and a racing heart rate, the doctor came back in and said, "Sam.  You have pneumonia."

Mother looked at him and fell off her chair.  That's the story of Sam.

This is also the story of how I lost my standing as a halfway decent mother!  Okay, that might be dramatic but seriously?  How did that happen?  How did he know?

This is the boy, who since the day he ever had an opinion would deny ever being sick.  I would keep him home from school and he would get so angry because he "wasn't sick."  He could have had a fever of 130 and he would still not allow me to tell him he was sick.  He hates being sick.  He knows when he gets sick, he gets quarantined away from the rest of the family, so it's really not fun.

I should have caught on that something really was wrong when he was begging to go to the hospital!

Sadly, we lost some time in treating it right away.  His blood counts are so low which is astonishing.  Even with poor counts, an infection almost always bumps their counts into the normal range but not this time.  It's almost like his body doesn't even recognize that something bad is happening.

We were given a choice to admit him or treat him on an outpatient basis.  I waffled back and forth but ultimately, chose to keep him at home.  His counts are way too low to take a risk at a hospital full of sick people.  I have to take him back every day to spend the morning getting filled up with two different antibiotics.  The antibiotics make him sick to his stomach.  I think tomorrow I will try to have him eat while he gets it and see if having food in his gut will help.

Ahhh...live and learn!

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