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Showing posts from 2010

Small World

I can't even describe how nice it was to be away from here but I learned alot about my life while I was gone.  I learned just how small my world is.   I don't know if I can explain this well enough for anyone else to understand but here goes. 
     I am reading a book right now called Room by Emma Donoghue.  It's about a girl who has been abducted and hidden away in a shed for 7 years.  9 months After an incident with her abductor, she has a baby who now lives with her hidden away in this shed that has no windows and a locked door.  It measures 11' square but he provides her with a flushing toilet,fridge,tv, table, bed and wardrobe.  He drops off food every now and again but only the essentials.  The story is how she tries to raise this boy creating a world that seems normal for him so he isn't scared and doesn't feel like he is being held captive.  The boy has no idea that any world exists beyond their tiny world in the room. 
     Sometimes, I feel like my …

Week One Post IVIG

Well, it's been just over a week since the last infusion.  Shelbie is still pretty tired and sleeps alot which is good.  We haven't done too much but play games and eat.  Last night, she was sick with stomach flu kinds of stuff but I loaded her up with Zofran and sent her to bed.  We were able to avoid anything too nasty and she was feeling better this morning. 
      Tomorrow will be our biggest day yet.  We will be going to the West Edmonton Mall again but this time to shop.  The kids received some gift cards and money so they are really excited.  Fashion here in Canada is a little different than Idaho and they have quite a few stores here that we don't have so that will be fun to break into a different style.  I will have to rent a wheelchair or scooter for Shelbie, I can't imagine there is anyway she will be able to get around otherwise. 
    I'm already getting depressed at the thought of coming back.  There are so many reasons why we need to get out of wher…

Much needed break

Coming to Edmonton has been just what the kids needed, especially Shelbie.  It has done wonders for her spirits.  She is really tired but hanging in there and enjoying the break from doctor appointments and worries.  She was able to have fun in the wave pool today but had to rest a lot because she is still really weak and runs out of steam.  She took at nap in a lounge chair by the pool then spent some time relaxing in one of the three hot tubs. 
     I will admit, going for bloodwork everyday is comforting.  It is nice to know where she stands so we can be proactive instead of feeling like we are blindsided all the time.  That's the only hard thing about being here.  We can't just run to the clinic or hospital to check on things.  I can always assume that the IVIG continues to work it's magic, dump the immune system but bring up the platelets. I know the first thing we will want to do when we get home is go for a blood check. 
     On the flight here, I had to be sure t…


Platelets are coming up today.  She is at 80 which is okay but still really low.  Good enough for us to go home for Christmas though.  We will have to take some precautions because her white count is super low and her hemoglobin is suffering too.  This means that she can hardly walk 20 ft without feeling winded and extreme fatigue.  We will have plenty of time to make our way through the airport and I have packed lots of antibacterial wipes, lotions and anything else that will keep her germ free.
      I feel so relieved that we can go.  It has been a busy afternoon trying to get ready.  I have people coming to stay the week at our house so the house can't just be clean but squeaky clean!  The kids are really looking forward to this trip.  Lately, the tension and fatigue has been choking us.  It feels like we are getting a pass out of jail. 
     I will continue to update and post from Canada.  Hopefully Shelbie won't have any problems while we are there.   It would be nice …

A fun surprise!

Sunday, Shelbie had some visitors.  I have known them for a year or two but not really known them well. We mostly just say 'hi' when we see each other.  They have a daughter just younger than Shelbie who has had some rough health problems too.  We have gotten to know each other much better over the last few weeks.  She has come by on a couple of occasisions to visit and called to share well wishes for Shelbie. 
     She is a school teacher of a 4th grade class and had them color a big mural for Shelbie.  Sunday, she brought it over along with some tasty treats.  It was so fun to see the great artwork from such caring children who have never met Shelbie.  When they unrolled it, it stretched from our kitchen all the way to the back door.  It was such a sweet surprise and really cheered us up.  I appreciate her thoughtfulness a lot!

Big thanks to all those kids who shared their warm thoughts with us and to this great family who made it all happen!

Second Verse...Same as the first

Yup, another long weekend in the hospital.  Shelbie's infusion went well, Saturday morning went well.  Saturday night...not so well!  I had tried all day to keep the celebrex and loratab on board so that we could stay on top of any potential side effects but by 6:30 our luck had run out.  Still, I kept trying to avoid the hospital.  By 10:30 she was screaming at me in pain and then the nightmare began.  She had run out of patience and longsuffering and I was the only one to receive the fallout.  Even though I knew she was just exhausted and in so much pain, it was still hard to hear those all too familiar words, "You don't even care!"
       I do care, I care too much.  I cared so much that I kept trying to convince her and myself that this time would be different.  I spent too much time in denial and the pain got way out of control.  There goes that mother of the year award I was so hoping to achieve!  Oh well, there's always next year. 
      Anyways, we had t…

Deep thoughts...

Well, didn't sleep hardly at all last night, tried but Shelbie has been so kind to share her rotten cold with me so that has been pleasant, then all the worrying about today, tomorrow, next week, next month, next year.....At some point, I need to get an emergency shut off switch in my head so I can just stop all the overtime spent in thinking. 

Last night, I was catching up on emails from the SDS group and other families I follow through their blogs.  Three SDS kids go to transplant the first part of January.  One sweet boy was suppose to start Dec. 20 but his donor was in a car accident so he will have to wait a little longer for his new marrow.  Hopefully, he will be able to stay strong until the donor has recovered enough to undergo the procedure. 

Another family I read about has a son with leukemia.  He has been battling it for a year now and has just under two years of chemo left to go.  I had all sorts of feelings and emotions come over me as I read about this family and t…

Infusions tomorrow

Well, our doctor called me tonight, he was able to get the information he needed on the pending tests and since her counts have dropped so quickly, she will be in the hospital tomorrow for IVIG.

 I felt so much better after talking to him.  Just to clarify things, I really like him and I think we work well together as  team.  He is always willing to explain things 50 different ways until I understand what is happening and I appreciate that quality in him. He is also happy to listen to my thoughts, worries, anxieties etc and we work through them together.  Just wanted to be clear that I have never had a complaint about him.   He tries to stay up on SDS which I also appreciate.   I hope my last post didn't reflect anything poorly about him, I will say that he still has some staffing issues to consider though.  So, we spoke briefly about the next few days and we will not do surgery before Christmas, it will more than likely take place after the holidays.  Relieved about that as well.…


Today has not been without it's frustrations.  I often think about all the things I think would be cool to do.  One of those things I would love to do is gather all the doctors in the country together and let them know what it feels like to be the patient or the mother of the patient.  The first thing I would tell them is that their Secretary will make or break them as a doctor and their practice.  Secondly, their nurses are the key factor in my decision to stick around as a patient or find somewhere else to go regardless of how great the doctor really is.  Third, some things can't not be discussed with a nurse or secretary so get on the phone and talk to me!

I have had to deal with all three nuisances today and it really irks me.  I know I should be more patient but I am tired.  A doctor generally has no idea what it's like to live our life.  They don't know what it's like to be the mom, trying to keep a sick kid calm.  They don't know how stupid and unprepare…

...Not Ready!

Mentally not ready for another weekend of infusions, meningitis, blah, blah, blah.  Shelbie opted out of blood work yesterday as we normally do and went in this morning instead.  We didn't even guess the counts which has become our traditional fun while we wait.  I actually had no idea what to expect.  I think I had probably convinced myself that they would still be in the normal range and we would not have to do this again.  Platelets are at 64.  She has another cold so her white cells are elevated to 3...still very low but elevated for her! 

So, now what, you ask?  Well, we are awaiting one test that will measure the levels of her Immunogamma Globulin.  If this is low, then we can expect surgery to place a catheter in a major vein just up from her heart with a port under her skin so that she will have an easier time getting the medications and testing she needs.  This also means that treatment will be every two to three weeks for a very long time...a very long time!  Everyday w…

Are you ready?

This week, I heard someone ask Shelbie if she was ready for whatever was coming her way?  She nodded yes.  I can't seem to get that question out of my mind.  What would my answer be if the question had of been asked of me?  I am afraid I would have had to say "no".  I try to be prepared for 'the worst case' but when the worst case happens, I always feel blindsided.  I'm not sure you can ever be prepared for all the emotion, fatigue, frustration and confusion that comes with any trial though we try to do our best.  When we leave the walls of our home, we try to front our way through but that can often be quite a disconnect from the wrestling that takes place with a situation on any given day inside our home and hearts.  It's just not that easy to be ready.

I guess I find some solace in remembering how I have handled the worst things that have happened so far.  I always thought the worst thing I would ever have to face was being divorced; single and all alo…

Ear, Nose and Throat

Just because one kid is sick, doesn't mean the others take time off.  We spent the afternoon at the Ear, Nose Throat doc.  Spencer has such intense allergies and so many things he is allergic to that he will need to undergo more specific testing before they can start the weekly injections to try to control his allergic reactions.  He is less than thrilled about this so we will wait until right after Christmas. The testing will involve a series of injections and last 3-4 hours and leave him feeling pretty sick so it won't be too fun.  On top of that, it will take place the day after we get back from GI testing in Boise.  I planned it then because he will already be missing a few days of school so what's one more that week?

Sam also saw the doctor but there is nothing they can do for him.  He suffers much like a CF kid does with a thick, stringy mucus that his body has a hard time managing.  It's not as bad as a CFer but still a nuisance for him.  I wasn't sure that …

On and on

A strange thing happens when we go through stuff like we have in the past few weeks.  I seem to manage just fine as we go through the worst of the crisis.  It must be adrenaline that kicks in and keeps me going because as soon as the initial worry passes, I drop off like a fly in November. 
     Today has been the hardest to get through yet; since Shelbie's counts dropped two weeks ago.  I feel like a balloon that has been deflated.  At 6pm I was ready to call it a night.  I don't often feel like this but it always happens after we get through something big.
     To update on Shelbie, her counts are still dropping in increments of 8000.  The IVIG has been in her system one week as of this Friday.  It is suppose to be effective for 2-3 weeks so it's too bad that we are already seeing the falling counts.  I have learned a lot about the auto immune process.  The biggest thing I have learned is that it is completely unpredictable.  No one can judge how long this is going to g…

It was nice while it lasted

Well, just got back from the hospital.  The falling trend of the platelets has begun.  It was really nice enjoying high counts for a week.  As it looks right now, depending on how fast they fall, she will have another infusion sometime towards the end of the week or first part of next week.  We will see the doctor tomorrow and make a plan.  My plan is that when we do another infusion, I want her admitted so that it can run slower than last time and have lots of fluids on board as well.  Taking more time to do it might eliminate a lot of the side effects.  We will also discuss the option of a pic line or port so she doesn't have to get stuck so much.  Today was really tough for them to find a vein.  The chemo she had three years ago has changed the size of her veins and they are really small now.  Couple that with the fact she is covered in bruises and some scar tissue is beginning to form, blood draws are no longer that simple.   We will have a couple of busy days in the next few …

Whaa hoooo!

So, Shelbie and I made our daily trip up to the hospital for bloodwork this morning.  Her platelets are at 158!  Awesome!!  We were so excited to see that number!  It was nice to feel the relief of a normal count.
Everyday, we have a little contest with the nurses to see who can come closest to guessing the platelet count. I have won twice this week.  I was only two away today and two away on Wednesday.  Do I know my kid or what?!
      On the downside though, her white count has dropped again to well below normal and her monocyte count is through the roof.  Neither one of those is a good thing but there is not much we can do.  In fixing one thing, we created a host of other problems.  As long as I can keep her virus and bacteria free, she should be okay.  It is promising to see such good counts one week after IVIG.  After speaking to the doc, he explained that the IVIG should stay in her system for 2-3 weeks.  After that time, it is likely that her counts will tank again and we will …

I Just Realized...

It is strange when the very realities of life really couldn't be seen before but from nowhere wake you up like a call at 3:00am.  I just realized that Shelbie really is sick.  For the last couple of years, she has become more and more tired, run down and never seems to feel well.  For the last couple of years, I have tried to coax her into finding a life worth living.  I have done that again this week.  In my mind, I think if I can just get her back into a new routine of 'normal' then she will fair better or if she gets off the couch she lays on all day and does something, then she will feel better.  I made her go to work for an hour on Monday and Tuesday.  Tonight I convinced her that going to Idaho Falls with us would be a nice break from the house.  Spencer wanted to find a snow board jacket and I had some returns to make.  It's fun to hang out with my kids shopping.  She decided that was a good idea. 

We all headed in and not even 10 min. into our first store, she…

Why Me?

This has been an interesting couple of weeks.  We have had a lot of problems compressed into a short amount of time.  There were moments when I was so exhausted I didn't think I would even make it one more minute but then there were other times, when I have felt more energy than ever before.  So many people have offered their prayers, warm thoughts and I know I have mentioned it before but I can't hardly express my gratitude to everyone. 

Some people have wondered why we have to go through what we do.  There is no easy answer.  It's just one of those things.  We were sent her to be tested, to see if we can truly become a disciple of Christ.  For some, that isn't always an acceptable answer.  There have been a few who suggested we just give up on Christ, get mad.  I personally don't feel like that is the answer.  I just know that by having faith and trusting that God has a bigger and better plan for us, we are blessed beyond measure.  Shelbie asked me the other day…

Pioneer Children

There is a song the kids use to sing when they were little in Primary at church.  It was called Pioneer Children.  I think that title is very fitting to use for the circumstance we find ourselves in. Just as the Pioneers walked long distances to create a better life for themselves and those generations to come, my kids are also part of an elite group of children living with SDS.  Allowing doctors to study them so that life will be better for those still to be diagnosed. 

 When I spoke to our doctor yesterday, he said the kids were in some ways, charting through new territories.  Of course lots of people have ITP and we are not the only ones with SDS and if it turns out the kids have mito disease, we won't be the first for that either.  The doctors are barely skimming the surfaces of these diseases as far as research goes.  Much has been learned but there are still so many missing pieces.  Unfortunately, we find ourselves stuck in that place where there is no sure treatment. We try…

A Little Reprieve

Sunday ended up being a better day.  The headache was manageable and she had a couple of visitors as well.  It  perked her up and kept her spirits up.  One thing I can say about us, we still seem to find our humor even when things are pretty gloomy.  People hear what Shelbie is having to go through right now and I am sure they think the feeling here is pretty heavy and depressing.  It really isn't.  It's actually pretty upbeat and positive.  That's not to say we don't have our moments. Sometimes, I find myself wondering how the world can go on when we are stumbling so much.  It doesn't last long and hopefully, is normal. 

Today is pretty good so far as well.  Shelbie had signed up at the beginning of the month to work today and tomorrow.  She had a one hour project to do at Walmart for Crest, setting up a display and such and one to do tomorrow at Broulims.  Once you sign up for a project, it's pretty hard to get out of it.  We headed to the hospital first thi…

ID Tags

This week, being at the hospital so much, I have been intrigued with the nurses ID badges.  What is up with that?  No one, not one person showed any resemblance to their photo.  It was really weird, even the BYUI student paramedic we had last night.  His picture had him looking like a 90lb 15 year old but in reality he looked to be in his mid twenties and definitely not 90lbs. ha ha. 

Okay, just thought I'd throw that out there.  We had high hopes for yesterday, we really did but the headache kept getting worse throughout the day, the fever lingered and by evening the vomiting started.  Try throwing up when you already feel like your head is going to explode.   I've never done that myself but to watch Shelbie was less than entertaining.  My heart broke for her.  There was nothing more I could do and felt helpless so I took her up to the ER.  They started fluids immediately and morphine.  That helped her settle down and the pain eased up a bit.  She had two bags of fluids and …

Running out of snappy titles...

I am running out of snappy titles for these posts.  Suffice it to say, all the days lately are long, hard or tiring, disappointing and frustrating.  I have no idea what to call today's post, 'Headache from Hell'.  Shelbie-Sue was not lucky enough to avoid the worst headache of all time.  It isn't quite as bad as the last time she had IVIG but it's a 7 on the infamous pain scale.  Her platelets are coming up which is dandy.  She has a whopping 24 now!!  Not good at all but 23 better than 1!  Funny how what makes us happy shifts.  I use to be really happy with 100, even 50 didn't worry me too much but after living with 1 for a couple of days anything is a relief.

I am not enjoying the learning curve to all this.  Immune deficiency disease is not something I am very familar with at all.  It took me 18 years to get a handle on the ins and outs of the basic SDS disease.  I am part of an email support group and they have been helpful with information and ideas of wha…

Super Long Day

About 7 hours of infusion and we are done for today.  More tests tomorrow but that won't be a big deal, I hope.  The nurses today were terrific!  They were so happy, helpful and had a great sense of humor and treated Shelbie as if she were their own daughter.  That made all the difference in the world.  They took it nice and slow and loaded her up with benedryl and tylenol beforehand in hopes of avoiding the nasty side effects.  She spent all day with a low grade fever and pretty low blood pressure.  Not sure yet if those symptoms will prove to be a problem or not.  So far, no headache to speak of so we may not have to deal with aseptic meningitis. 

Her counts are still in the tank so she is far from out of the woods, especially the bleeding risks since she is still functioning on an insanely small number of platelets.  This is no immediate fix that's for sure but it's a start. 

Even though this last week has consumed my thoughts, still in the back of mind is the nagging…

The fun begins soon...

Half an hour and Shelbie starts the IVIG infusion, unless by some miracle her body kicked into gear and is now making platelets hand over fist!  It could happen, it's happened before but only time will tell. 

Here are a few facts about IVIG
IVIG stands for Intravenous Immunoglobulin
It contains the antibody IgG that is extracted from the blood plasma
It can take up to 20,000 donors to get enough IgG for one treatment
Results can be seen in 24-48 hours though some may have to wait 3-4 weeks before seeing an improvement
Some may never see good results from this treatment.  After 3-4 sessions of infusion and no results, they
        abandon the course of treatment. 
If good results are seen, infusions can happen every week or every couple of weeks.
The cost of one treatment......$10,000.  Merry Christmas Shelbie!!  ( I'm just kidding of course)

This has been one expensive fall.  $40,000 for bone marrow biopsies and mitochondrial testing.  There is a shortage of platelets.  One…

The latest

It's hard getting sick over the holidays.  Not much could happen today.  Tomorrow morning we will head back into the hospital for an IVIG treatment.  Hopefully she won't have too many reactions from it and maybe by some great miracle her platelets are coming back on their own and in my perfect world, we won't have to do the infusion.  It never hurts to keep hoping. 

Today has been quiet but filled with lots of well wishes and warm thoughts.  So many kind people extending invitations for me to join their families.  I was able to take a good long nap and felt much better about things afterwards.  I really needed some quiet time when I could just let the feelings come without trying to hide them or put on a facade that everything is okay.  I felt bad saying no to such kindness but it was the needful thing. 

I will update more tomorrow.  Things change quickly in our little crazy world.  You really can't predict what will happen next even though we like to try.


How do you spell INSANITY

I will tell you how to spell insanity; R -E -D  C- R -O -S -S.  I hate to give them a bad rap but they seriously messed up today!  This morning, Shelbie was suppose to get her platelets at 8:00am.  We arrived early, ready to deal.  The platelets had not arrived as anticipated because of the storm that has been in the area for a few days.  Salt Lake had grounded flights last night.  No big deal, she said they tracked the package with Red Cross and the platelets had been irradiated and they had been put on the first flight out this morning so it would just be a couple of hours.  We left, went home and waited for them to call us back up.  The nurse called around 11:00 to say that they didn't make the flight as planned but they would be put on a later flight but would arrive at the hospital at 2:30.  We went back up at 2:00 to get the IV started, bloodwork done etc.  2:30 came and we were anxious to get things started.  Her platelets had now dropped to 1000.  Very dangerous at this po…

Who was I kidding? Ha, ha, ha!!!!

It's 11:35.  It's been a horribly long day with Shelbie in the hospital and waiting for Red Cross to find some intelligence.  Long story which I will report on next, in a different post entitled something like, "How do you spell INSANITY?"  Anyways, Shelbie is not out of the woods, not by a long shot and she is anxious about going to sleep so I will stay up through the night to be sure she doesn't have any bleeding issues, that means a lot of time to blog! I have to say, when I opened up my blog tonight, I realized that two days ago, I said how happy I was that this was going to be a quiet week "medically speaking" and was looking forward to a "happy, healthy" Thanksgiving.  How funny!!!  No really, it makes me can't blame a girl for hoping!  Medically speaking, it has been chaotic, bizarre and so overwhelming I don't even think I am living in the same plane as the rest of you and I am so sick of speaking in medical terms I…

Really tough day

Today came at us from out of nowhere.  I had an early morning doctor appointment and when I came home, Shelbie was up and announced that she had lots of petichae.  Petichae is basically broken blood vessels, in Shelbie's case, happens when her platelets are low or dropping.  I wasn't alarmed or even really that concerned but thought with the holiday week, we should at least get a CBC just to be sure she wasn't in any danger.  We went with the boys to shovel the driveway of a widow and then drove over to the oncologist's office.  We have had a huge storm in the area for a few days now and we arrived just as they were closing down.  Most of their patients cancelled and they wanted to get the staff home before things got worse.  I told them it would just be a quick CBC and didn't even need to see the doctor since I can pretty much decipher what all the counts mean. 

We all sat in the waiting room placing bets on what her platelet count would be.  The winner had to bu…

Daring to hope

With Thanksgiving this week, I am really hoping the kids stay healthy.  There are sick people all around us and it seems impossible that we might be so lucky as to dodge the strep or flu viruses but I am crossing my fingers and hoping.  Medically speaking, we should have a quiet week.  Tomorrow, I will spend a fair amount of time working with the National Shwachman Diamond Registry to get the kids, myself and extended family members registered.  They sent the large, overstuffed envelope of questions and procedures for me but it has to be filled out with a nurse from the registry so that will happen tomorrow.   I'm not exactly sure what being part of the registry means but it is something that our Oncologist deemed absolutely necessary so I suppose I will learn more tomorrow.  Other than one doctor appointment for Shelbie, Spencer and me, we have no other doctor visits planned. So, here's hoping for a healthy, happy holiday!

If I didn't have bad luck...

Wow, what a day!  Tuesday, we spent the afternoon at the Ear, Nose, Throat doctor.  I believe, I would rather see a dentist for a root canal than have someone messing with my ears, nose or throat.  I had anxiety just watching what Shelbie and Spencer had to go through; air pushed through their ears, plier like things up their nose and all sorts of poking and prodding.  Yuk! 

Spencer was there because he is still having problems with his soft palette in his mouth feeling swollen and enlarged. Back in April, he sneezed and seconds later, his uvula and palette were resting on his tongue.  No one could figure out what was going on and as a wild guess, threw out allergies as the possible problem.  Spencer complains about it alot so I decided it was time for a specialist to take a look. The doctor wanted to do a scope while we were there.  They put a tube up his nose then dropped it down his throat.  I felt so bad for him.  It looked horribly uncomfortable and he takes after me with a devi…

The Giant Awakes

It is interesting to me how easily I am tricked into this false sense of security.  Like being lulled to sleep on a gently rocking boat.  How easily I try to forget all the issues that come with chronic illness in hopes of eliminating stress.  Not just try to forget but actually compartmentalize it all so that it disappears somewhere in the back of my mind.  For awhile, I really believe we are normal as the most normal family could be.  From out of nowhere, the boat isn't rocking so gently anymore and I can't believe I've been duped again!  Perhaps it's a good thing but it feels like ripping a bandaid from freshly formed road rash that covers my leg. It stings. 

This week seems to have lasted forever and existed before time.  Results are a distant memory until the tiniest thing wakes up this giant of anxiety in me.  Spencer called tonight.  He is sick.  The symptoms are vague, no energy, extreme fatigue,nausea, no fever, no sore throat, nothing that would make me thin…

Silent Warriors

This has been a long week yet sped by at the same time.  Monday feels like forever ago.  The kids have been up and down with little viral annoyances or one thing or another most of which needed the attention of a doctor.  I took them all in on Wednesday afternoon.  Shelbie's platelets are running low again.  Not horribly low like we have seen in the past but they have dropped steadily since August, in fact dropped by 70,000 so now they are below normal.  I didn't really show much reaction while in the office but it was discouraging to hear. 

The following afternoon, when I completed my cleaning jobs, I headed to the library and ran some other errands.  It seemed that everywhere I went, I ran into other moms who have a child with cancer or who are going through chemo treatments with a child.  We know of each others struggles but don't really know each other.   We exchanged the international signal for mom's who take care of sick kids, a tender smile and a sympathetic n…

Baby Panda Sneezing

This is the cutest video.  I love how the mamma bear is just chillin' and then 'freaks' when her baby sneezes!  It's as if she is saying, "What the heck?!!"  SDS is like that sometimes,  things can be just fine and we are all chillin' and then out of the blue...someone sneezes!

Sufficient for the day

Yesterday, was a particularly difficult day and it sort of caught me off guard.  I guess after doing the mental and emotional calisthenics that we have been doing for an extended period of time, I was more exhausted than I realized.  I spent a lot of time just thinking about things and did some reading before going to bed at a very late hour. 

I read a passage in Matthew, a common phrase reminding me to 'consider the lillies'.  I've read that passage a million times, it has been a favorite since I was a teenager.  It starts out, "take no thought for your life, what ye shall eat, or what ye shall drink..for your Heavenly Father knoweth that ye have need for all these things."  It concludes by saying "take therefore no thought for the morrow; for the morrow shall take thought for the things of itself."  I really needed to be reminded of that.  I spent so much time worrying about a job, health insurance, financial issues, how I will pay for all these medi…


It's been an exhausting 31/2 weeks!  We finally got answers today!  Before I get to the results, I have a confession to make.  I wasn't going to say anything but told my kids today so now it's okay to blab it on a blog.  The Dr. called last Wednesday!  Ya, but I wasn't home.  Shelbie was though, looked at caller ID and it said 'Fred Hutchinson'.  She didn't know who Fred Hutchinson was so didn't answer it.  I checked caller ID and messages faithfully but I didn't recognize the name either.  I was so focused on looking for 'Seattle Children's' to show up.  Fred Hutchinson is the cancer hospital in Seattle where Dr. S does her research from!  For some reason, the message didn't show up until Saturday night.  She didn't give any results on the message, just that she needed to talk to me.  The rest of the weekend dragged and I only slept for 3 hours on Sunday night.  I was determined to swamp her with voicemails and messages until sh…

Wanna Help?

I know I have posted before about the Sullenger family.  I don't know them personally but have been interested in them since their only child died this past August.  They are in the middle of this awesome project to honor their daughter Preslee on her third birthday which would have been in December.  They are making tote bags for Primary Children's Medical Center PICU for parents who arrive in an emergency situation and need some essentials. You can visit the blog they have set up for this event here.  Once on their blog, you will see a list of things they are still in need of.  I just thought with the holidays just around the corner, you may be looking for a family service project to do and I think this is a great one!  Wanted to pass along a little cheer!

Homeless Shelter

Last night we spent the afternoon and evening at The City of Refuge, a men's homeless shelter in Idaho Falls.  It was the best way to end a busy week.  I spent the day cooking and baking.  We arrived at 4:00 and got busy setting up chairs, filling water pitchers and getting all the food set out and warmed back up.  I was so proud of my kids!  They all jumped right in to work and didn't even have to be told what to do.  They even organized themselves for the assembly line of filling up the plates.  It was such a great feeling to be lost in helping other people.  We were all happy and enjoyed getting to know the director of the facility and some of the men who had been checked in for the week.  It is a very humble place, as you can tell from the pictures, they don't have much but boy, there was such a great feeling there.  God is watching over these people even though they are struggling through hard times. 

People started coming in around 5:30pm, dinner wasn't served u…