Skip to main content

Posts

Showing posts from August, 2017

The In-between

The waiting...

Here we are on the corner of In-between.  We are impatiently waiting until the 12th when we can get this heart show on the road. I have spent a great deal of time this week trying to understand the timing of God; why things happen the way they do.

I haven't decided upon any answers.  It's an adventure for sure!  I think for the most part, answers come just little by little, always on time.  A little light to see what's next and then a little more.  I can see some things falling into place and in a small way, I'm glad that we have an extra week, I can see now that it's a bigger blessing than I thought.

I have had a really hard time trying to find someone to cover my cleaning for the 5000+ square foot office I clean.  I finally had a thought of who I could ask and that has sort of fallen into place. It's someone who desperately needs the money and I desperately need someone to help me.  Her husband has been out of work for over a year so it will b…

The Climb

After spending 6 hours in the ER Sunday/Monday through the night, I am realizing that life is hard and getting harder.

Shelbie has been sick with something all week long, it finally got pretty bad on Sunday and by the evening, I knew we needed to take some extra measures so I took her to the hospital.  She has E. Coli.  Imagine that?  Because that's exactly what we needed right now.   Her and a friend ate out for dinner last Monday and they were both sick that night and the next day.  Her friend got better but Shelbie did not and has gotten worse.  It could have been the restaurant food but since she is so badly immune compromised, it's possible, the E.Coli we naturally have in our system got out of hand and spilled out into her blood. I think the latter is more believable.

She missed her transfusion two weeks ago and last week, the tube snapped in half where it joins the pump and plasma poured out so fast!  We lost a third of her dose so she is in a very compromised state.  E…

The job at hand

We have survived the day after...

Here's what I'm thinking...we will be okay.

Sam's doing okay today.  He has almost finished covering his bedroom wall in his sketches.  Maybe tomorrow he will start painting it. I'm glad he has chosen to stay busy instead letting depressing thoughts take over.

Shelbie has been having the roughest of times with seizures and then constant sleeping.  The doctor told me that she would sleep forever after a big seizure.  She has been struggling the past two days with something, so I had a pretty good idea that that would trigger some seizure activity and her meds still aren't up to therapeutic levels.  She must have had a big one in the night because she's been hard to wake up and for the few minutes she was awake, she wasn't making much sense and couldn't formulate much of a thought.  Tonight, she seemed much better.

In a strange way, it's a blessing.  She had to get to the city for some props she needs for a big pho…

Heart Surgery

Life is funny...you have two weeks to prepare for the reality that your son will likely be having heart surgery and for two weeks, you imagine what that could be like.  You mull it over, roll it around in your mind and you almost get use to the idea.  You try it on, imagine yourself on that day, in your mind they wheel him away, down the sterile hall, through the automatic doors and there are sounds that only echo in the back halls of a hospital.  And ...it's okay.  'It's going to be okay', you tell yourself.

But then...you hear the doctor say, "Sam.  We need to fix your heart and I think we need to do that with a pacemaker."

And then, it sounds like he is speaking anything but English.  You look at the doctor and his lips are moving in slow motion and then you glance at your Son and without the wall behind his chair, I imagine he would be free falling in that moment.  You notice his flushed face, the way his eyes just sunk into his cheeks and you know that …

Totality

I had high hopes for this weekend.  We live right in the path of totality for the solar eclipse.  I'm lucky enough to have seen a total solar eclipse once before when I lived in Canada.

For months, this event has been talked about, rumored about, exaggerated about...there were big expectations, not only for how amazing the event itself would be but the number of people that were projected to stay in our little town for the weekend.  Up until this morning, it was like throwing a party and no one showing up.  I kind of felt sad and disappointed.

But...this morning, all that changed!  This town was crammed and it was so cool!  I loved it!  I loved the energy which sounds super weird coming from an introverted recluse who hates crowds, spontaneity and basically living large!!  Just kidding...I actually sometimes really love all that!  I was so excited in fact, I couldn't sleep last night!  Just kidding again...there were other reasons I couldn't sleep!

Anyways...while I wasn…

Heart updates and such

It's been a pretty tough week around here.  Personally, I've had some issues myself to deal with that are a little disconcerting.  Not feeling well for such a long time prompted me to find a doctor who would actually listen to me.  That led to a series of tests in the hospital.

I'm pretty sneaky when it comes to stuff like this.  The kids get a little anxious if they know I have to have tests and stuff so I try to not let them know.  The big concern has been my kidney.  It's had a growth in it that we've been watching for awhile but lately, every day I feel like I have the start of a kidney stone and the more I drink to stay hydrated, the worse I feel.  No final word on that, I will find out on Wednesday of the coming week.  Yesterday and today have been miserable in the pain department so I hope it's something that is nothing...or can be fixed easily.  Today, I had to spend a little more time having tests done and those results will also be back Wednesday whe…

An Unlikely Gift

I've been thinking about gifts lately.  I haven't talked at all about this, but I started my annual 29 Gifts project earlier this month.  I'm a little late.  29 Gifts project is usually reserved for the month of January but when January came, I didn't have it in me to even think about anything productive.  I thought I would tackle it in February.

February came and gave way to March...and now it's August.

And while I haven't been documenting my projects as I have in the past, I've been busy giving.  I've been busy receiving too cause that is what happens when you give; you get ten-fold back.  I had a little help from a friend for a few of the days, some of the bigger things.  We made care packages for the Huntsman Cancer Center, Madison.  Last week, I delivered a ton of school supplies to The Haven in the city; a homeless shelter for women and children.  There have been smaller gifts but still significant to me, in between.

Tonight, on my way home from …

Moving ahead

Last night, my home teachers came over and they posed the question...

"How do you see yourself getting through all these trials in 2 or 3 years from now?"

On Friday, our Immunologist asked me a similar question.  He gets overwhelmed at the situation we are facing with all three of the kids having extremely complicated and difficult health challenges.

 "How are you getting through this?" He asked. "I need to know that you are taking care of yourself.  Your kids need you more than ever.  There is no doubt in my mind that you are the reason your kids are still alive today.  You need to find a way to be here, healthy, for whatever is coming next."

I don't know the answer to either question.  I don't think I'm doing a very good job of getting through, at least with any degree of grace and dignity.  I don't know how we are going to get through all of this tomorrow, let alone a year from now or 2 or 5 or any number of years.   I do know that I ca…

25 years for Shelbie

We interrupt our current drama to bring you a little birthday joy and happiness!

Shelbie is 25 years old today!

She seems to get more and more beautiful with each passing year.  I think the more she is tested and tried, the more refining she endures, the more beautiful her spirit becomes and that reflects so much in her physical appearance.  I'm so proud of her.

At Immunology clinic this past week, our doctor asked if she was still working and Shelbie replied that she was.  The doctor was astounded that she was still getting up every day, making an effort to continue living her life, setting goals and moving forward.  He said, "I am completely humbled to be a small part of your life!  I have patients with some minor immune issue who have chosen to go on disability and do nothing with their life.  You have so many things wrong, epilepsy and demyelination alone is reason enough to slow down and even do nothing but you keep on going.  That is unbelievable."

It is unbeliev…

So it goes...

We had a big day on Friday at our clinic appointments.  I was feeling a great deal of anxiety going into Sam's appointments with the new Electrophysiologist.  I have heard mixed reviews on the doctor we had and well...I've already voiced my opinion on new doctors.

However, I was pretty relieved when he came in.  He is an older guy and clearly feels comfortable in his arena of electrophysiology.  I really like his PA as well.  At first, he didn't say much and I heard the dreaded sentence...Well, Lance Armstrong... I shut him down real fast!  But, he wasn't offended.  He said he appreciated me saying that Sam has been deteriorating for the past couple of years.  It's interesting to actually see his heart function dwindle over time, on paper.  At any rate, by the time the appointment ended, we were joking around and he had loosened up enough to laugh along with our teasing.

Sam's heart rate on Friday was 37.  Dr. F had him brisk walking in the hall for a few minut…

Electrophysiology

It's been a mess trying to get this appointment for Sam lined out.  They had us booked for a Friday afternoon appointment but I was so upset when I found out it was going to be with the same Cardiac Electrophysiologist that Spencer has.  I am not super happy with him.   When I hung up the phone with the nurse, I immediately felt anxious.
A short while later, she called me back to say that doctor decided he couldn't be in clinic on Friday so she wanted to switch us to someone else but first she had to get all the docs to review his chart and decide if they would take us on...and get permission from the doc we had our first appointment from to switch teams.  What is that all about?  I thought we lived in a 'free' country...or something like that.
Late this afternoon, the nurse confirmed that one other doctor agreed to take Sam's case.  I'm still not feeling very settled.  I hate new doctors.  I hate the rehashing of history.  I hate the getting use to bedside m…

Family

The timing of my sister coming has been great.  It's just what the kids needed.  It's just what I needed too.  The kids rarely get to see their cousins from my side; a country divides us. My niece and her friend were coming down for Especially For Youth at our local University so my sister came to spend the week as well.

As for our latest setback.  I did hear from our doctor late Friday and University Hospital is trying to juggle their schedule around to fit Sam in on Wed, Thurs, or Friday coming up.   Never in my life, did I think I would be asking and reminding my kid to have another Red Bull or ask how many Mountain Dew Kickstarts he had.  It feels so surreal which is so strange since I have known this day may come.  It just came sooner than I had hoped.







It sure is nice having family here.  We have had some good talks, both of us needed to unload the weights of our world.  The kids are laughing so much and having fun.  It's been the best distraction for Sam.  He goes fr…

Broken Hearts

I did not see this day coming!

I had made an appointment last week for Sam to see a new doctor here in town.  His dizziness has been getting worse.  He is going on a month or more of this.   He has been at the Chiropractor for 3 weeks in hopes of helping his neck pain which I attributed to the cause of his dizziness.  It has not been helpful and the Chiropractor was a little perplexed and sent Sam for an x-ray two days ago to determine why he isn't getting better.

 The past three days, he has done nothing but sleep all day long or lay around on the couch.  Sometimes, it's hard to tell the difference between bored Sam and sick Sam.  When Sam is bored, if I ask him to do something, he grumbles and complains.  When Sam is sick, if I ask him to do something, he quietly gets up and does whatever I asked of him.  He hasn't been grumbling and complaining this week so something is wrong.

This morning, we went to the appointment.  Right off the bat, things weren't progressing …

Schooled.

Tonight after work, I stopped to get the mail and my little neighbor friend was out on the grass playing with his pal.
I said,  "Hey! Are you having fun playing Star Wars?" I was only guessing because they had those light thingys.  Then I said to the friend, "Are you Darth Vader?"

His reply to me was, "No!  Don't you know anything?  I'm not Darth Vader, he is.  Why would you think I was Darth Vader?"

This six year old rendered me speechless!  Then the two of them started arguing about Rogue something and CP, D2...I don't have a clue.  I watched Star Wars in 1979 or something and didn't pay much attention then and could care less now.  I just stood there, til I realized my mouth was gaping and watching 6 year old boys argue was the highlight of my day! "Okay, well, have fun!  Don't fight, sorry I asked."  LOL...and drove off.

A couple of days ago, Sam came into my office in the early afternoon and said, "So, what are you…