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Showing posts from February, 2012


Living with Shwachman Diamond Syndrome means you need to be nimble and flexible.  Good thing the heart is a muscle because rest assured, it's going to be stretched and stretched.

This weekend is going to stretch me to my limits and it will be interesting to see how we all fare.  Spencer is going to Boise for the State Basketball Tournament with a group of friends.  That in itself is testing me in so many ways.  In addition, Spencer has had a really rough week.  Tonight, as he lays in the recliner he says, "Mom!! I don't even know how I feel anymore!  I can't tell the difference between nausea and heartburn.  I don't even remember what it feels like to be healthy."

He eats Pepto Bismal like they are Smarties.  He has had to rely on Zofran, an anti nausea med to get him through the day and night.  There is not an antacid strong enough to handle whatever is going on with him.  I have no idea how he will manage this weekend and keep all his meds straight.  The b…

What to do...

This past weekend we escaped to Canada.  I felt like I could actually breathe as opposed to bouncing between suffocation and panic.  The best part was that the kids actually felt great and could enjoy the short time they had with their cousins.  Spencer spent most of the time staying at my neice's dorm room with his cousin and friend so I hardly saw him the two days we were there.  I know he enjoyed his new found freedom.  

Unfortunately, we had to come back.  I don't know why other than this is where our 'life' is but the truth is, there is nothing here for us.  Everyone was sad and disappointed when we loaded the car and said goodbye. 

Once unpacking, things started to fall apart.  Sam got really sick to his stomach and had severe pain.  I tried to make him comfortable so he could get some sleep.  He got a little sleep but woke up doubled over in pain and nausea.  I watched him for the morning but by noon, he was feeling well enough to make it to his afternoon class…

Another one bites the dust

Sadly, Shelbie is having bad luck with finding and keeping friends.  It seems as soon as they find out she has some 'problems' they turn and run. 

She met a guy a few weeks ago and has been out a couple of times with him.  He seems really nice, seems to have his 'stuff' together unlike most guys she comes in contact with.  She just wanted to enjoy hanging out with him but he wanted to know the 'big' details of her life.  She finally told him, trying to downplay the significance of it and he seemed, at the time, to take it all in stride but then, he didn't call, he didn't text, he sort of forgot about her.  I guess I'm speculating here that he has forgotten about her.  He knew she was going in for her transfusion last week but didn't call or anything. 

So, Shelbie has a broken heart...again!  When the kids were diagnosed with Shwachman Diamond Syndrome, I began planning how we would cope with the physical problems,  I didn't take into accou…

Over the years

We've been through quite a bit in the last oh, I don't know, 19 years!  Maybe a little more than a bit; I don't want to exaggerate or anything.  We have lived through 6 years straight of seizures, ambulance rides, heart monitors.  We survived Spencer's bout with encephalitis that seemed to last forever and included a life flight to Boise.  Samuel lived through a horrible intusception and major surgery that I really thought was going to take his life.  We have been there and done that with chemo, twice and now we are surviving IVIG which I continue to loathe.  This is just some highlights, of course there is a lot more but this post is not about all the things we have survived. 

This is about the people we've met along the way.  This week, my thoughts have been with one particular nurse who has shared our path with us many, many times.  Her name is Annette.  She is the sweetest nurse a person could ask for.  She has taken care of each one of my kids at one time or …

Make A Wish

Last night, we met with Spencer's Wish Granters from Make A Wish, Lori and Joanne.  They are the sweetest women ever!  They were also Shelbie's wish granters when she received her Make A Wish back in 2007and did such a great job.  We have stayed in touch with them and have become good friends and try to get together when we can.  Though it's not often, it's always fun to see them. 

Now, it's all about Spencer.  It has been so hard for him to decide what to wish for and it hasn't been a process he's enjoyed.  In the end, he narrowed it down to his top three choices.  You'll never guess what his top choice was.... He wished to go to a live taping of Saturday Night Live in New York!  Wouldn't that be fun?  Funny too!  He loves comedy and is the family comic.  His second choice was a shopping spree to Best Buy and his third choice was a shopping spree at the West Edmonton Mall in Edmonton, Alberta Canada!

It's safe to say that whichever wish they …

"Where's my rock?"

I can't remember where we were going this weekend, it doesn't matter really and Shelbie turned to me and said, "Where's my rock?" 
"What?"  I asked.
"Where's my rock?  What is wrong with you?  You are turning to sand."
I have to admit, she caught me off guard.  "I don't know."was my only reply. 

I don't know.  I do know it's been a hard month in my dealings with doctors, hospitals and their staff.  It's not enough apparently that I have to deal with all the other craptastic things in life, I get to deal with the bad moods of others who then take it out on me and make their problems, mine.  Funny how that works.  I feel bad.  I put extreme effort into each day to be strong and I feel bad because my wavering is causing my kids to waver some. 

I apologized but she understood.  I think she really did understand in that moment how much I have tried to absorb all the hurt and shock over the past 19 years.  At some po…

Physical Therapy

Physical Therapy started this week for Spencer.  He's got some pretty messed up joints in his back and shoulder but already, after just three sessions, he is feeling better.  They start out with some ultrasound and then do some light therapy on him.  They tell me the light therapy is meant to repair the mitochondrial within the muscle.  Interesting, since the weakened mitochondrial is a big problem for Spence.  I wanted to get some pictures of it but it's such a powerful light, everyone in the room has to wear some funky, dark glasses so we don't burn our eyes like you do when you have sun staring contests! I'm not sure how long he will do physical therapy, I know we are on the schedule for a couple of weeks right now.  I guess it will depend on his recovery rate.  With the strength training, and massage to go along with everything else, I'm sure he will be back on the slopes in no time. 
He has missed a couple of days of school this week due to continuing proble…

So the story goes

Little Agnes Caldwell was a pioneer girl all of 9 years old.  She headed West with the Willie Handcart Company.  She suffered terribly on the trail and was tired.  On one cold day, rescue wagons came, taking with them the sick and those too tired to continue walking.  Agnes tried to keep up to the wagons.  One driver slowed to offer her a ride and she gladly accepted his offer. 

"At this, he reached over, taking my hand, clucking to the horses to make me run, with legs that seemed to me could run no farther.  On we went to what seemed like miles.  What went through my head at the time was that he was the meanest man that ever lived or that I had ever heard of. 

Just what seemed the breaking point, he stopped.  Taking a blanket, he wrapped me up and lay me in the bottom of the wagon, warm and comfortable.  Here I had time to change my mind, as I surely did, knowing full well by doing this, he saved me from freezing when taken into the wagon."

How many times do you feel like…

Be Still

It's been a hard sort of week. I think we need to end it on a peaceful note. This song reminds me that it's not always about finding words to make someone understand. Sometimes being silent and still is more spend just 4 min and 35 seconds remembering that I have a best, Heavenly friend who will order the chaos, provide a way and get us to our joyful end.

Butterfly Guild Fundraiser

I've mentioned before the big Shwachman Diamond Syndrome Fundraiser that took place in Seattle this past January, well I thought I would post some pictures from the event.  I wasn't able to be there but I was lucky enough to help in some small ways with gathering donations for the silent and live auctions and making the placecards for the dinner.  Big thanks to my friends Sarah and Joe for making it all happen with the Guild they formed called the Butterfly Guild.   I also wanted to thank my friend Des for helping me cut out all those butterflies- over 200!! She's the best!

Sticks and Stones....

May break your bones and so can snowboarding...BUT...not this time!  Whew!! I almost hugged the doctor when he came in and said the xrays looked okay!  What a relief!  I almost hugged him again when he told Spencer he couldn't snowboard the rest of the season...but then he laughed and he and Spencer did a high five!  They love to tease me...

His back is not without problems and he will have to start physical therapy with ultrasound and all that jazz.  Lucky for us, they had a 4th year DO student in the office whose forte was adjustments and muscle energy.  He came in and worked on Spencer for quite awhile. I really liked him, smart kid! (Wow, I just showed my age by calling a 30 something person a kid! yikes!)

I kept him home from school today so I could keep him steady on the anti inflammatory meds and muscle relaxers.  He slept the biggest part of the day which was good for him.  Some day, he'll learn that dropping 20' cliffs on a snowboard is not normal...okay, to me, i…