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Showing posts from September, 2014

A Belated Birthday

I can't believe I didn't post about Spencer's birthday on the blog!  I posted on Facebook, Instagram but didn't get it to the blog!  I made such a big deal about it too!! So, here is my Ode to Spencer!!

My oldest son!  A whopping 20 years old on September 8th.  I miss that boy more than anything.  I sometimes catch myself daydreaming about the day I get to actually wrap my arms around him and hold him tight!  I get teary eyed just thinking about our reunion!

I use to think I wanted a houseful of girls and when I found out I was having a boy, I remember thinking...huh?  I'm not a boy mom!  Why would God send me a boy?  But boy oh boy, I am so glad he sent me two boys!  They take such good care of me.  They are both so kind and sensitive to me and Shelbie.

Spencer has been such a blessing to our family.  He adds to our wacky sense of humor and together, we have so much fun, no matter what the circumstances.  He has a way of breaking the tension.  Here are some of my…

How quickly things change

It's amazing to me how quickly I can change my mind.  How quickly my energy can go from octane levels to mostly empty.

I was all ready to get going on some of these appointments for the kids Sam is late in getting his bone marrow biopsy done, his lung function tests done and another check up on the scarring on his retina.  I was going to have that all set up for this week since it's potato harvest and they are out for school.

This weekend, I was going to work on Shelbie's stuff for our Seattle appointment.

None of that energy!  Since I am the queen of denial...putting it off seems like a perfectly rational thing to do!

My friend, whose little girl has Dyskeratosis Congenita or at lease a clinical version of it, had a bone marrow biopsy nearly 3 months ago.  She is not doing well at all.  From what I have read, she hasn't really had a decent day since the transplant.  Her organs are having such a hard time, I guess from the chemo regimens.  It freaks me…

I Lived

One of my SDS friends posted this music video from One Republic called, I Lived.  They showcase a 15 year old boy with Cystic Fibrosis.

It was a pretty powerful message.  Not only that, when the boy starts talking, that congested echo from diseased lungs,  flooded my mind with all sorts of memories from my friend Dana who passed away of CF.  It's amazing how a voice can bring back so many great memories.  Probably the best memories of my life.

I sort of had to choke back the tears as I watched the video.  I could see my own boys in this young man's life.  My boys have done it all!  When they are called home, I know they will be able to say they lived.

Now, if I too could say that...we'd be doing great! Here's to another day of trying.

New Doc on the Block

In three weeks, we head back to Seattle for a new Immunology Appointment.

This whole year, I have been very unprepared for every single appointment and I don't want that to happen again.  So, I'm getting started early!

Between the research  I'm doing for my friend, my research for Shelbie and finally researching the disease the boys have.  I've been a busy little researching bee!  I love researching.  It is one of my passions, especially when I actually find answers.

A little update on my friend.  She does not have Mito she has a genetic mutation called MTHFR.  It's rare and strangely enough, when I found that buried in her genetic report, I already knew something about it!

As the story goes, last year, I had a friend send me some articles on the MTHFR gene.  She felt it fit my kids.  I wasn't so sure.  Something about it didn't feel quite right and I simply filed it away with my other resources.  It's a funny gene because people call it the 'Mot…

I noticed.

Friday night, after some late meetings in the city, I decided that instead of rushing home to keep working in an empty house...on a Friday night...I would stop at my favorite book store, Barnes and Noble.  I really can't remember the last time I just sat.  I didn't pull out my phone, I didn't pine for my laptop. I didn't have a stack of my favorite magazines.  I just sat with my first, Skinny Starbucks Cocoa with Salted Caramel of the season.  I'm pretty sure the girl that made my cocoa wondered what the point was to ordering it with non fat milk but adding caramel and whipping cream.  I don't know...go figure! It's how I roll.

I actually noticed, as I sat, that I was breathing.  I don't usually notice that I breathe.  Mostly, I feel like I'm always holding my breath, about to turn blue.

I noticed that my shoulders were sitting up around my ears which might explain why people were staring at me.  I tried to shake out the tension and put them back i…

The Quandaries of Blogging

I'm not super happy about the state of my blog.  I hated to have to go private but considering the crazies that come into my life from time to time...I was getting a bit freaked out.

My blog is something I really, really enjoy.  I enjoy blogging so much, I use to have 5 blogs!  Now, I'm just down to 3.  The future of this blog is in flux...again!

I am toying with the idea of just going public again.  If the crazies want to get me and my family, a private blog isn't going to stop them.  If you hate someone, you just pretty much hate them.

The other idea I am considering is changing the name, the address and keeping it public.  If I do that, it's going to take some time for the crazies to find me again because they will keep searching for the old address...

Finally, just scrapping it altogether.  This doesn't feel like a great option but...I am going through a mid life crisis so anything could happen.  ;)

I think this quandary is really just the standard theme I'…

This Week

It hasn't been a bad week.  Busy as usual but I've been able to stay above the current so that's good.  I think things will start slowing down for the fall as several of my jobs start coming to an end.
Here are some highlights:

* Shelbie survived IVIG like a champ!  NO hospital trips this time!  Still having major bleeding problems.  This picture, I like to refer to as Lettuce Petechiae...That is not it's official name but just to give you an idea of how easily she starts bleeding, this damage was from carrying in a grocery bag with lettuce in it, Kale to be exact.  Yep...there's a problem.  It would sure be nice if we had a doctor who would be willing to step outside the box and give a diagnosis the old college try.

* Sam has had a crazy time at school.  I'm so sick of teachers.  They are so annoying to me.  All I hear is complaining from a huge majority of them.  They complain about going back to work.  They complain about not getting a snow day.  They compla…

Good Luck

Well, I have had this nagging feeling that our good luck is running out.  Now, that may sound hilarious coming from the girl whose only luck comes in the form of bad.

The one thing we have had good luck with is the fact that we have not had to deal with many acute health problems over the past couple of years, or maybe I have just forgotten.  We haven't had many high fevers or bad infections.  There's something about the acute problems that can be harder than the long standing chronic ones.

There are so many horrible viruses going around and the number of sick people is huge! I try to emphasize hand washing but it's time for some more reminders.  Colorado had 900 children check into the hospital in the past two weeks because of a horrible virus.  I really hope that Spencer can avoid this one! It sounds like the winter is shaping up to be a doozy!  I have this hunch, we may feel its effects this year.

Confessions of an unhappy girl

Three weeks ago, I stumbled onto the 100 Happy Days website.  They challenge people to find one happy thing a day and hashtag it on Facebook or Instagram and their website.   For some reason, this moved me!  They claim that only 71% of people can be happy for 100 days.  It felt like they were challenging me!  So, without really thinking...I jumped into the challenge.

I was so excited about it, I dragged a few unassuming people in with me!

It took all of two days for me to realize this was going to be a harder challenge than I thought it would be.  If you think about it for two seconds, how hard is it to come up with one happy moment a day?  Doesn't sound too hard but trust me to over think something, including happiness!

What is happiness?  All of a sudden it seemed so trivial.  I had no idea what kind of happy moment I could possibly post.  I stumbled through the first two days but really, it seemed so forced and superficial.  I posted a picture of a llama.  He made me smile but…

I must have done something right...

Last week, I went to Book Club like I do just about every month.  I've been going since it started in 2000!  A lot has happened in 14 years.

Book Club has evolved into something a little more than just reading a good, or bad book for the month.  It's more of a support group.  Book Club is made up of 5, use to be 6, of the strongest women I know!  Each one of us has been through a horrific tragedy of some kind, except for me.  My stuff isn't really tragic, it's just chronic.  We have been there for each other through thick and thin.  Through the passing away of husbands and children.  The weddings, the babies, the transplants and all the other happenings of life you can imagine.  We go through it together in a way.  I guess what I'm trying to say is these women are no stranger to hard times and difficult trials.

They have been through it all with me too!

Each month, we always take a little time to catch up on each other's life but last week, I seemed to monop…