Stones With Fair Colors

Life sucks and then you die!  Have you heard this lovely adage before?  I'm sure you have.  Life does suck at times.  Our life sucks at times but most of the time, despite what I write here, our life is okay.   We do a lot of course correcting to find 'normal' again or at least some kind of normal that feels do-able but we always find it and life takes on a new rhythm.

Sometimes, I wonder, if you could put our life to music what would the symphony sound like?  Would it be a chorus of angry, sharp tones or a melodic flow of lovely chords and arpeggios? Would I like what I hear?

Life with Shwachman Diamond Syndrome is not fun and Mitochondrial disease makes it even less fun but the truth is, we aren't dead yet.  We are still living life.  We still have lots to live for and until everyone has fulfilled the measure of their design, no one is going anywhere.  So, don't apologize.

Don't apologize for the difficulties you read about here, it's just part of the son…

What a day we had on Wednesday!

Crappy, dumb transfusion day.

I hated every single minute of Wednesday...there, I said it.

I haven't been so angry, so resentful, so...EVERYTHING as I was Wednesday.

Things started out okay, the IV went in the very first time! That hasn't happened in almost forever.  One stick.  They started the transfusion out at 10ml/hour which is snail pace slow.  Her pre-meds were fine, nothing out of the ordinary with that so we were expecting smooth sailing.

About an hour into it, she began having reactions.  She was overcome with excruciating pain in every single one of her joints.  She described the pain like when you have a raging fever and your whole body aches, even your skin only 10 times worse.  She just laid there shaking, then the migraine started and then the breathing problems.  The nurse came in to check her vitals and she had a low grade fever and her blood pressure had tanked.  It was 88/44.  That's pretty low.  Her heart rate was pret…

I can't believe we are already at the 6 month mark of the kids' last bone marrow biopsy!  The boys' biopsies came back all wonky and they really wanted them to have another one just 6 months out to see if the problems have resolved.  Here we are at 6 months!  Ugh...

I am not going to have Spencer recheck his marrow.  I know he doesn't care.  He just wants to live his life and trying to co ordinate all that in Denver is a daunting task.  For the most part, he is hanging in there aside from his usual fatigue and daily nausea.  I guess what I am saying is that his symptoms haven't gotten worse so that is good.

Sam is another story.  Getting the biopsy done would be easy enough but he seems like he is doing okay, relatively speaking.  The mouth sores might indicate some changes happening but there are no glaring issues.  I have to decide what to do.  I'm not too excited to put him under again and stress his body with another biopsy but I also don't want to mis…

It seems like forever since Shelbie had an IVIG treatment.  We did miss last month because the H Pylori was so bad!  We didn't dare add IVIG to her already struggling body.  So, here we are at the start of one very long day!

I can honestly say I haven't missed this place...at all!  It was so nice having a little break though I'm sure Shelbie is anxious to feel decent for a change.  She leaves next week for a two week vacation with her grandparents so we need to get her in tip top shape to enjoy a little time on the warm beaches of Mexico!  H Pylori is still a problem and we still don't have a resolve.

In other news, Sam continues to be plagued by nausea daily and always after he eats.  He handles it much like Spencer does and just tries to pretend everything is fine.  Occasionally, he will flop down on the sofa and hardly move. He's had some mouth sores pop up the past couple of weeks and that almost always means he is neutropenic ( a drop in his white cells).  O…

We have been one entire week without anyone getting damaged in any way!  Whew!  Sometimes it's the little things we need to appreciate.  Of course, we still have the old injuries we are nursing but we are mending.

Sam still has some bruising on his face but it's fading.  He has had a particularly hard weekend feeling sick though.  I'm not too sure what is going on with that.  He worked really hard for me on Friday and Saturday and over exerted himself and spent the nights really nauseated and weak.  He is sort of acting the way Spencer does when he spends a day playing hard on the ski hill.  Their bodies become so drained, it takes a day or two to rebuild.  I guess that can be attributed to the mitochondrial problems.

I have heard parents say it before but I am seeing it now firsthand.  With Shwachman Diamond Syndrome, it seems that kids go through cycles of health.  From birth to about age 8 or 9, they are pretty sick most of the time.  Then you get this most wonderful …

A week or two ago, I made a prayer request for some dear friends all battling cancer and auto immune liver failure!  I thought you might want to know how things are going for a few of these people I have been able to connect with.

Damen, the young man awaiting a liver transplant, is very, very sick but his infection has cleared up and he is getting a little stronger and a little more nourished.  He has to get stronger before they will dare operate on him so that is the goal.  He has a long rocky road ahead but the infection clearing up is huge.

I visited with my friend J who has pancreatic cancer.  I shared with her what I did on my blog.  She said, "Without a doubt, I feel those prayers!  Please ask them to keep praying!"  Her tumor is shrinking, by a lot, and there is a chance they will be able to operate and remove part of her pancreas.  She is also being considered for some treatment trials and has a hopeful attitude that things are looking up!  Isn't that amazing?
…

This is what your nose looks like when your knee makes contact with it while doing a 'Peanut Roll' on the trampoline.

Don't ask what a Peanut Roll is, I'm pretty sure since Sam can do it, it has something to do with great heights and some sort of backwards contortions, Roll being the key word here.   Just for the record, he is not a happy camper.  I guess you can tell that from this picture.  He's actually pretty ticked.


I took him to the doctor on Friday and there isn't much they can do.  They offered to do an x-ray so we would know for sure if it is broken but if it is, they can't really do anything anyways.  There is a bit of a bend in the nasal bone so chances are good it's broken but who knows.  It is so incredibly swollen, they couldn't even see inside.  The swelling has spread to his eyes and by the evening, the right side of his face was turning black with bruising.  
Poor kid.  I feel so bad for him.  He really has had a crummy week. Firs…

The whole insurance thing sucks!  Do you know what sucks more than the actual problem?  The fact that people have to make it about politics.  I realize it all stems from politics but let's face it, it is what it is.  I don't care if it's a democrat or a republican that made the mess, I care that I am the one having to try to make it work and it's frustrating and seriously feels a little hopeless.

People can rant and rave all they want about how great it is and I believe if my situation was different, it would be great.  People say, "Well, just keep your existing policy."  It's not that easy.

They won't let me keep my policy.  Once it comes up for renewal, it doesn't meet President Obama's requirements anyways, and I will have to move to the exchange.  Furthermore, if I don't move to the exchange, I will be hit with penalties and taxes.  I can't believe that my policy isn't adequate.  I am in a high risk pool.  I have detailed cove…

Three days into October and I was lulled into this peaceful state that we might just escape the whole Affordable Care Act...Obamacare debacle.  Like a tornado from nowhere, it touched down tonight.  Completely unexpected.  I admit, I should have been educating myself all along so that I was not so ignorant.  I assumed that as long as I had a policy in place, we would not be hassled.  I was wrong.

I have just given myself a crash course in the Affordable Care Act.  Here is where I will add a disclaimer or two...For some, who have had pre-existing conditions and live in a State that doesn't insure people in such a situation, the ACA is a good thing.  Secondly, this is not going to be a blog post that will educate you on facts, it's going to be emotional and my opinion and how I feel about all these changes. There is no shortage of places you can go to read the facts and decide for yourself.  So, this is my story, my experience, my words and my feelings.  It's not about being…

Well, we all fell apart today!  

Three of us, at the doctor!  After 3 days of serious pain, numbness in my left arm and shoulder, I decided to drag myself to the doctor and beg for some relief...oh, did I mention that dang achilles tendon?  Still hurting.

Shelbie...still sick.  Nausea, acid to her eyeballs and other unmentionables.  Despite the fact she feels so lousy, she is still working...what a champ.

Sam reminded me yesterday that his cellulitis toe is still dank and disgusting. So, what better day than the first day of October to get on top of things?


Here we are, waiting for the poor doctor who has to deal with the likes of us.  He drew some blood on me to check some mineral and vitamin levels.  He addressed my swollen and red joints and wonders if my auto immune disease has progressed to something additional to my Ankylosing Spondylitis.  It is so weird that my joints are dying off one by one and there is no end in sight.  I finally, begrudgingly, consented to a steroid shot …