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Showing posts from September, 2010

The Verdict is In...Sort of

I received an email from Dr. S this afternoon. She had the results of the genetic testing for SDS.  All three kids tested negative for the gene and mutations they have found thus far. So, what does this mean?  Well, as she put it, "This does not mean they do not have SDS.  At least one of your children presents with all the signs and symptoms of SDS to make a clinical diagnosis."  She explained when we were there in August that so many children who have all the symptoms never test positive for the gene.  Genetics on this disease is so brand new and they have less than 10 mutations so there is still plenty of genetic work to be done.  Cystic Fibrosis, the 'sister' disease if you will to SDS has over 1000 mutations that have been discovered over years of study and research. 

She would like us to return to Seattle for additional testing on the mitochondria  DNA sequence and 10 color flow cytometry as well as bone marrow biopsies.  Of course we will go.  I don't wan…

Waiting for news...

It's been 6 weeks since we went to Seattle.  6 weeks is how long the doctor said it would take for genetics to come back.  Once genetics are back, then we start all the specialist visits but most importantly bone marrow biopsies.  I can't wait for those to be scheduled and get the results back as well as the HLA typing on a bone marrow donor for all three kids.  The waiting kills me.  I feel like my whole life is in a stall wondering what will happen over the next few weeks.  I know what you're thinking,  "Why does it matter, get on with life."  It's hard to explain so I won't.  It just doesn't work that way. 

Oh, Spencer did see the surgeon this week for his follow up and he is doing well.  The biopsies came back normal!!!Yay!!  The pathology on the gallbladder showed that it was diseased so the test was accurate and taking it out was the right thing to do! Yay!! Spencer is doing much better although really tired still and has to take anti nausea me…

Don't Let Me Forget....Part 2

(If you are going to read this through in one sitting, grab a snack...it's long...I'm just sayin....)
Thoughts have been teeming through my head today I could hardly wait to get them all down on paper and begin to parse through them all and form one cohesive message.  Sometimes, for me at least, this is how the Holy Ghost works.  A message in anagram form that I am then forced to work through.  I guess that's all part of the whole search, ponder and pray formula.  Someday, maybe in the near future, months or years from now, I am going to have to remember how I felt this morning.  I will need to find my way back to that moment when connections were made, and clarity reigned in my mind.  Sadly, it is only 16 hours later and already I have almost forgotten what it felt like.  The peace, the stillness, the aha...I get it moment as I sat in the temple. 

I arrived early for the session, 45 minutes early.  A couple of workers asked if I would like to do some other work before th…

Don't Let Me Forget...Part 1

Sunday I listened to a fabulous talk by Elder Webb, a general authority in town to call a new Stake Presidency for our Stake.  I will be paraphrasing his talk of course and hopefully, I can do his thoughts justice.  This is part 1 of where this week is taking me in the world of chronic illness. By the end of the part 2, I hope my feelings have gelled with a little more clarity. 

       I don't ever want to forget this story....  He relates his experience as a Mission President in Venezuela some time ago.  In that country, the government dictates what job a person can get and is based on the amount of education a person has.  Many people are not well educated and are not able to get decent jobs because of this law.  Elder Webb had a missionary who was from Venezuela.  He was very bright and sharp but only had a junior high education.  This meant that the only job he would be able to get after his mission was digging ditches, with a shovel.  The thought of this broke Elder Webb'…

Running

I woke up Saturday morning with the chills, a throbbing in my head and congestion that made my teeth ache.  I would have stayed in bed but my back felt like it had carried an elephant through the night.  I dragged myself over to the clubhouse thinking I could run from this virus, stay a few steps ahead of it.  Lately, it seems all I've been is sick.  I stopped exercising back in April when I had surgery.  I got sick that same week and have never been the same.  I think exercising keeps the stress to a manageable level and well, there is a lot to be stressed about these days.  Even though, I feel like I do okay each day, obviously, it is taking it's toll on my health so last Monday, I decided to get back to my daily routine of cardio and weights.  If I skipped now, before establishing this habit again, I would be defeated and I was not about to let that happen. 

I probably expended more energy complaining about my exercises yesterday than any other effort I made.  Each step wa…

Better Day

Today is definitely a better day for Spencer.  The anti nausea medicine has helped him to start eating solids and keep them down.  He is off pain meds as well though he still takes ibuprofen to keep the dull ache to just that, dull.  He has a long way to go to get his weight back on.  I am really glad to see glimpses of my 'old' Spencer coming back.  I hope he doesn't have to rely on the anti nausea meds for too long but if so, we will deal.  Now comes the hard part, getting him caught up on three weeks of homework!

You Can't Play God!

You've heard it said that this is not a dress rehearsal, it's LIFE.  We all have a part to play, a part reserved just for us.  I can not play the part of God and neither can you! A no brainer right?  Then why, I wonder do I keep trying to take over HIS part?

I am probably the most guilty of this.  Well, actually, I try really hard to be patient and I have been learning through the years that I can not steer the river, cookies crumble, chips will fall where they may and spilled milk should not render me sunk in a pool of my own tears.  I try to see a half full glass of whatever drink is in front of me.  Maybe I am just kidding myself but I think I really do try.  Some days though, are harder than others to just GIVE UP! I mean, just give up trying to make everything okay, ya know? The old adage, let go and let God?  I really need to make a bigger effort in just giving up this coming week.  I allowed a few things the past few days get me wound around the axel and I need to let i…
Just another picture to add to our 'here we go' collection as in Here We Go Again...more hospitals, more tests, more trials.

Gall Bladder Surgery

Well, through all my doubt and fear the great and dreadful day is over! He was in surgery for just over two hours, a lot longer than I was anticipating.  The surgery itself was successful and the biopsies were done as well.  We did discover by early afternoon that he is allergic to demoral!  That was not fun and created all sorts of problems.  So much so that he was transported to the hospital from the surgery center.  NOTE TO SELF....Day surgery is a joke!!! I will never opt for that again unless it's to get a wart removed! Whoever thought you could take out a body part then head home 6 hours later was smokin something!! I felt relieved when the decision was made to keep him in the hospital.  I sat there for 6 hours watching his heartrate drop into the high 30's mixed in with episodes of apnea.  His oxygen was really low as well, at times dipping into the 70's.  I had no idea how I would manage all this at home. 

So, I'm glad that the worst of the week is behind us. …

LIFE. Un-defined

I have a life...it's not always the best life but it is certainly full of variety.  It annoys me when people confuse me with someone who defines their life by the trials they 'keep', so to speak.  For instance, I have never understood how people with addictions define their life by their addiction.  An alcoholic will always introduce themself as an alcoholic or a recovering alcoholic even though they have been sober for 25 years! I don't get that. Why would you want to hang on to that ugly part of your life.  I realize it was once a big part of them and a bigger deal to overcome the addiction but how about an introduction like, "I have been a happy person for 25 years." or better yet, "My name is Fred."

So, what am I getting at....hmmmmm.  Well, lately, things have been really tough.  We have had a mountain of uncertainties pile upon us at once it seems and I've sometimes been lost in the distress of it all but I have never become my problems.  …

We have a plan

It's been a long day but after a lot of time spent with the surgeon, Spencer will have his gall bladder removed on Tuesday along with a scope and several biopsies.  I just pray we are doing the right thing.  Most anyone without a gall bladder does just fine but Spencer is not just anyone.  He is a boy with a complex set of other problems including malabsorption and a liver and pancreas that have been known to struggle at times.  I don't fully understand what the consequeces of this will be but I know this is only the beginning of a long road. I really need to find a way to increase my faith and trust in my decision without looking back, worrying about the what if's.  I asked Spencer as we left the office of the Surgeon what he was feeling.  He said in all the wisdom of an almost 16 year old, "Mom, this is the right thing to do.  Please don't worry, I'm not worried. It's going to be okay."  Inside I'm screaming while grinding my teeth to fine powde…

I hate rollercoasters

I hate rollercoasters.  I really hate rollercoasters. Funny how the one thing in life I really hate is the one thing I am subjected to each and every day lately!  My life is a rollercoaster.  If it were to win an award, it would be for the highest climb, longest, sharpest drops, the most twists and turns in a short amount of time and the most precarious because on my ride, you hang from the very ends of your fingertips with no recognizable safety harness.  Sound fun? 

I spoke to the nurse at our doctor's office this morning and things are, were, all set up for Spencer.  I asked her to fax copies of the report to our GI in Boise so that he would be in the loop.  Later this morning, I received an email for the GI saying, "Don't take out his gall bladder. That is not the problem.  I will call your surgeon and talk to him."  Now what?   I guess we will find out tomorrow what the surgeon has to say.  I hate the fact that doctors can't agree on things such as this.  …

The Rest of the Story

Well, our awesome docs called tonight but I actually saw one of our doctors who is actually in our ward and is my home teacher and gave me the news in person.  Spencer will need his gall bladder out.  It is not even functioning!  I am relieved that they have found the cause of his nausea but I feel bad that I let it go on so long just thinking it was an adjustment needed in his enzymes.  I think everyone of the doctors watching over Spencer was surprised by the news. 

     It's hard to say how Spencer feels about all this news.  He is really good at keeping it all inside.  I can tell he is bummed that he will be down for his birthday since the surgery will most likely take place the first part of next week.  At the same time though, waiting a week will still put him down for his birthday since he is so sick. 

     I am tired, really tired.  When I think about going through this next week it makes me feel like I just spent 8 hours at Chuck A Rama and am now boarding the worlds cr…

Today's Events

This was our morning at MM Hospital.  Spencer had to lay still like this for just over 2 hours.  They were injecting contrasts and dyes and then some horrible substance that made him feel really sick and get super hot.  He was able to watch as the contrast worked through his liver, gallbladder, and all the major ducts.  We won't know much until tomorrow probably, maybe even Friday. 

    There were two students attending this procedure and the radiologist was giving them a play by play of what she was doing and then discussed with them the amount of radiation Spencer would be receiving. She was going on about how important it was that they protected themselves from the radiation by staying behind the lead glass panel she had moved between Spencer and her desk.  She got out some radiation detector tucked in the top drawer and showed us all how radioactive Spencer was compared to other parts of the room.  When she set it beside him, the lights were flashing and a rapid alarm began …