Tuesday, August 28, 2012

For what purpose?

You've heard it said that people come into your life for a reason.  Everything is as it should be in this moment.  Some are here to help us, to frustrate us, to teach us.  They offer special things that we need in order to learn and progress.  Do you believe in this concept?  I do.  Sometimes though, I wish I didn't.  I mean, it can be a little unnerving don't you think?

When we were in Canada a few weeks ago, we stopped on our way home to visit my two grandmothers who are both in nursing homes.  They suffer from dementia and they have lived for nearly an entire Century!  When I saw them in March, they didn't even know who I was.  It made me so sad.  My Grandma Pratt just sat there with a blank look on her face, so confused.  This time, I figured it would be more of the same confusion.  It wasn't. 

We entered her room and she was sitting in the corner and looked up and said, "Kathy, I knew you would come this morning."  She had been in her exercise class and had a feeling that she needed to go back to her room because someone was going to be looking for her.   I was so happy that she recognized me.  It wasn't for long.  After that, she was completely lost and had no idea who I was.  That brief moment was just what I needed.  When we said goodbye I told my kids that that was a tender mercy from God and she would soon be gone.  I knew, that Heavenly Father knew, that I needed her to remember me one last time.  My grandma will most likely not make it to the end of the week.  She is very ill and there is nothing more the doctors can do for her.

I recently received comments from the sweetest girl who has an autonomic nervous system disorder similar to the kids'.  She offered so much advice on making Shelbie's next transfusion easier.  I am hopeful that it will work. That was not just some co incidence, out of the blue kind of thing.  She was sent for a definite purpose and her story and Shelbie's are so similar.

I like it when I can see the purpose; when I know or can predict why something happens and why people come into your life when they do.  When it's unclear, I get really nervous. 

So, yesterday, I met a new friend.  She came over to my house and introduced herself.  We got to chatting and throughout our conversation, came to find out that her husband recently passed away from guess what?  Yup, an autonomic nervous system disorder.  I probably asked her too many questions and she was being evasive because I'm sure she figured it was such a rare disease I wouldn't understand anyways.  Well, surprise, I knew all too well what she was talking about! 

I can't help but wonder why she has suddenly appeared in my life.  A woman much older than me yet her path with many similarities.  Are things going to worse for us suddenly and she will be my rock, the one who helps us through?  Am I suppose to be helping her in some way?  There's no way this is just a co-incidence.  You just don't meet a lot of people with this kind of disease everyday. 

Life is interesting isn't it?  Sometimes, I think I can't wait to see how things turn out but then again, maybe I can.
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Friday, August 24, 2012

The can of worms

Well, I hate worms, especially cans of worms.  We tend to deal with alot of cans of worms around here.  Here we go, opening another one...the throat.   Spencer's stinkin' throat.  It's been the ongoing saga for, oh, I don't know, since he was born!!

Today, I have big throat problems AND a very angry young man to deal with.  We went in for his allergy shots this morning to the Ear Nose Throat Doctor and first of all, they bumped us from seeing our regular doctor to the PA.  I like the PA but he has never seen the kids and it's just so annoying to start all over with the history and hope he 'gets its' which, new guys usually don't until we have seen them a few times.  I was a big bugged with the change because our usual doc has been taking care of this issue for over a year now. 

So, anyways, we mention the fact that Spencer feels like he has a lump in his throat and a fullness that sometimes makes it hard to breathe.  We mention the lack of gag reflex that happened last fall.  We mention the fact that he feels like he is drowning in mucus.  He has always suffered with apnea but he feels like even that is getting worse.  He will wake up in the night gasping for air. 

They decided to scope him this morning while we were there and of course, there is 'nothing' wrong.  My favorite thing in the world is when they say, "Well, everything looks great."  Okay, so why does he feel like his throat is 10 times too small?  I wanted to say, "Just because you think it looks great doesn't mean the problems magically disappear!"  but I didn't.  I just started asking a million questions.  This is not something I can just drop.  It's been over a year for goodness sakes!

Why do I always have to be the sleuth and detective?  When Spencer was a baby, he was born with a condition called laryngomalacia.  Basically, the nerves in his windpipe and larynx were not developed properly and caused the windpipe to collapse when he ate or cried or sometimes, just breathing.  It was scary and he was blue alot from not getting enough air. 

It seems odd to me that he was born with a nerve issue, now he has a gag reflux issue which has to do with the dying of his nerves and now he has this sensation that there is a huge lump in his throat.  It all sounds like a nerve issue...aka mitochondrial disease!  The ENT agreed that it could be a nerve issue that gives him the sensation of his throat closing in.   It could be another nerve dying or the struggling one trying to come back.  In the end, they have no idea but suggests further scope studies and a ct scan to rule out tumors in the soft tissues.  He suggested we do this when we are in Boise in a couple of weeks.  He also doubled his acid reflux medication because there was acid and inflammation all the way up past the larynx on the scope today so that needs to be taken care of.

Ughh....So, we left and Spencer blew up!  He said, "I'm not doing this anymore.  I am refusing all my medication until we see our doctor in Boise.  I am tired of nobody taking me seriously.  I want things to just get super bad so they will finally do something about it and find out the problems instead of guessing and throwing me another pill to take because just maybe it's this, or maybe it's that!  There is something wrong.  I need help!"

I felt so bad.  I don't know how else to help him.  I can't imagine how uncomfortable it must be.  On top of that, he never has a day when he is not sick with gastrointestinal issues.  Never.  I am praying our doctor in Boise will help, actually do something instead of just suggesting another pill.  Spencer is at the end of his rope and I fear that in two weeks, I will be too. 
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Wednesday, August 22, 2012

Oh ya...

I have a tendancy to forget a lot of things after they happen.  I don't think I use to be like that I but I really have a short memory span.  Maybe that Alzheimer's gene is kicking in a little sooner than anticipated. (No really, all three kids have it so I must have it too.)

 The summer has really been not too bad as far as the kids health goes.  Not great but they have been able to get lots of sleep and take things easy.   We've had good days and bad but really more good from what I can remember without going back to read my journal.  So, today was the first day of school.  I was expecting just another summer day but no such luck. 

Two extremely tired and sick boys fell into the house after school.  Spencer is not really one to complain, he goes about his business no matter how he feels but at dinner he said, "Mom, I seriously don't think I can go to school and work too.  I feel sick by lunch so I try to eat something which makes me sicker.  So sick, I feel like I have a fever and chills and my stomach hurts so bad I can't stand it.  It lasts all afternoon and then I have to go straight to work and haul tires for 3 hours.  I am so weak and nauseated.  I can't do this one more day!" 

That isn't something you want to hear on the first day of school!  He's taking his pancreatic enzymes, his ulcer medication, his colitis medication and Pepcid, just for good measure, and we can not control the gastrointestinal issues.  I have tried oils and other home remedies as well.  School just seems to wear them right out.  I remember how much this was a problem last year too only Spencer wasn't working.  He would come home and go straight to the couch for a two hour nap before dinner. 

Sam is having the same kinds of problems only today, he chose not to eat at all!  No breakfast, no lunch, because he felt sick and picked at dinner.  He too is really tired.  For Sam though, he really isn't sleeping.  In fact, I have to let him sleep in my bed lately.  We have a Hobo Spider infestation and no matter how much I spray, they come in the house, all over the house.  I'm not talking about one or two a week.  Last week, in one hour, we had to step on 17 Hobos!!  17!!  Everyday, there are 4 or 5 to kill and a few have been by his bed, in the living room and a ton in the basement.  He won't go near any of those places to sleep so that leaves my bed and the floor is totally out of the question.  So, he is definitely sleep deprived worrying about one crawling in his mouth.

I had forgotten how a full day of school can drain the kids.  So, we are off to the doctors this week.  Shelbie has her transfusion of iron tomorrow and Spencer will be at the Ear, Nose Throat to determine the lump he has growing in his throat.  He continually has to clear his throat, and there is a big sore back there that never heals.  It has me a little worried that it might be something serious.  He has complained about it for over 2 months. 

In two weeks, we head to Boise where I am once again putting all my eggs in one basket in hopes that this Doctor can help the kids feel better.   There is a niggling in the back of my mind that just doesn't think that is going to happen.  It's so strange how things can go from pretty normal to all crazy again!  I sure haven't missed these crazy symptoms that's for sure...
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Tuesday, August 21, 2012

Keeping up

It's been hard lately to keep up with all the writing I am doing.  I write for 4 blogs, 5 Facebook pages and 6-8 articles a day.  By the time I take care of the kids, the house, the dog, the this and the that, I am all out of words.  Not really. 

We have been on the go since our vacation in Canada a few weeks ago.  The kids too have been non stop working and playing.  It finally caught up to everyone today! 

Shelbie woke up with a bad cold and felt pretty crummy all day.  Tonight, after sleeping a lot today, she has perked up.   Spencer is still having issues with the same throat problem, nausea and a list of other things.  So, even though I haven't been posting regularly, we are still at it, fighting one thing or another.  I know the stomach flu is going around so I have been pretty crazy lately, insisting on hand washing, cloroxing my house, shopping carts and everything else. 

We finally got our insurance worked out for Shelbie to start her IV iron and that will start on Thursday.  She will have some this week and another round next week. Hoping it will all go smoothly. 

I have met a really great girl from my blog.  She left a wonderful comment a few posts back.  She has helped me so much to find solutions to Shelbie's infusions.  She has also offered other advice of things to look for and maybe some additional testing to do.  It has really been an answer to prayers. 

Besides the infusions this week, we will be seeing the Ear, Nose Throat doctor to try to figure out Spencer's throat.  He complains everyday about a lump in his throat.  Whatever that lump is has now turned into a mean looking scab.  I have no clue what it is, another strange thing!! 

We are hoping to hear about Spencer's wish...it will be any day I'm sure!
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Sunday, August 12, 2012

Amazing Human Body

When you think about it, our bodies are amazing!  The things we do to it!  What it has to go through and everyday, it just keeps on keeping on.  I look at my own kids and I am surprised at all the things they can still do.  I look at friends I know, and what they can do, some with only one lung, or only 14% lung funtion.  Some are riddled with cancer but you would never know it.  Somehow, the body just adapts and keeps on going.

It's perplexing to me that my kids are functioning quite well on bone marrow that is only producing about 20%  of the cells it should be when all of their friends are producing 100% yet they still keep up and remain active. 

Samuel is on the go all day.  He's my kid who just can't stay put yet he has no iron stores in his body.  I don't know how he can be so physical even when his blood is so low but he does.  Since he isn't showing signs of struggle right now to keep up, he will start a prescription of iron but Shelbie, who is in the same boat will be on IV iron this week since she is feeling the effects of no iron in her body. 

Tomorrow, we will celebrate Shelbie's 20th birthday!  20 years I have had with this girl and about 5 more than I ever imagined I would have so each day is a blessing but more on that...tomorrow when it's official. 
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Friday, August 10, 2012

IVIG and Dysautonomia

Yesterday was a rough day for Shelbie's transfusion.  Of course it was hard to find a vein.  It's sad to see these great nurse's feel bad for not getting it the first time.  She has the tiniest veins and as soon as get started, they disappear so that is a bit stressful.

Not even 10 minutes into the transfusion, she had a bad reaction.  They immediately stopped the IV.  She was having such a hard time breathing,  they ended up having to give her oxygen and a dose of steroids to calm things down.  It was almost as if she was having an allergic reaction but I really think it was due to her dysautonomia. 

After oxygen, steroids and Ativan, she was able to breathe a bit easier.  It took about an hour for things to settle down.  I would have to say that it was the scariest transfusion to date.  I usually don't get ruffled too much on transfusion day but I was really worried about the dramatic reaction. 

It confirmed to me that we really need to find a Neurologist that lives closer to us than Seattle so we have options for care.  Dysautonomia is so unpredictable and we never know when things are going to get crazy. 

Next week, we will have to be back here everyday for the iron infusions.  Hoping for a quiet weekend for Shelbie's sake.  Her birthday is on Monday.  She is going to be 20 years old!!! Are you kidding me?  I have an adult child?  I just don't know how that happened.
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Thursday, August 9, 2012

Exciting News

I got a call yesterday from Make A Wish.  They asked if they could feature Spencer in their 10th Anniversary publication and if he would be willing to attend a meet and greet for their annual fundraiser in Boise that's coming up! 

Serving Up Wishes is their big fundraiser on September 4th.  We attended it when Shelbie had her wish in 2007.  When you get to the fundraiser, you have the chance to buy 'funny money'.  All the different teams from Boise State are assigned to tables and serve you all night long.  You use the funny money to get them to do things for you.  The crazier the request, the better.  People were paying football players to take their kids on piggy back rides or they would be asked to get on stage and sing a song or act crazy.  We had the Boise State Football Team waiting on our table.  We paid them to cut up Sam's meat, feed Shelbie, dance with Shelbie and a bunch of other silly things.  Shelbie and the Quarterback actually got on stage and did an impromptu dance. 

It was an amazing experience to see so many people giving generously to these kids who have struggled with health problems, some their whole life.  It would be fun to attend the dinner but it would cost $700 for our whole family to attend so we will just feel the energy for the meet and greet beforehand. The following day, we will spend at St. Lukes for GI studies and testing.

I really appreciate all the people who make Wishes possible.  Just having one week off from the realities of life makes such a big difference. 

I am excited for Spencer and his New York trip.  He loves big cities.  My only fear is that he will fall in love with New York and want to move there! 
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Sunday, August 5, 2012

Catching Up

The past month has not gone well, a little stressful to say the least but the worst is behind us with bone marrow biopsies out of the way, results and the other little annoyances we had to deal with. 

We were so blessed to be able to spend the last week in Canada visiting my family for my niece's wedding.  It was a week that was so needed, especially for the kids.  It felt like we could actually breathe without the weight of our world resting on our shoulders.  It's funny to me how getting away can help you see things more clearly.  When you have one set back after another, it's hard to see the big picture.  The days start blending together with a hazy film of fatigue clouding them up. 

The kids did pretty well while we were gone.  Other than fatigue and some of the usual things for Shelbie, she did so well.  The boys continued to have bouts of nausea, dizziness, weakness etc. 

One incident happened while we were shopping in a store and Spencer had to sit down on the floor because he felt so sick.  I asked the clerk for the location of the restroom and they didn't have one for public use.  That is so annoying to me.  I secretly hoped Spencer would just vomit all over their clothes rack just to prove a point that they need to offer the public a restroom to use.  I just don't understand that mentality.

We are back to reality now.  School is just around the corner and we still have to make a trip to Boise for the kids to have a work up with the Gastroenterologist.  While we are there, I am going to start scouting out a Neurologist that we can use when we can't make it all the way to Seattle.

So much to do, so little time.
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Wednesday, August 1, 2012

Is this normal?

We have been in Canada for the past few days and today, I experienced the highlight of this trip.  I got to see the new Children's Hospital here in Calgary!  I know, of all the things to see in Calgary, I just really wanted to see the hospital. 

Today, we were on our way to Banff and I took a wrong turn and right there in front of us was the hospital!  I have never been so excited to make a wrong turn as I was today.  I love designing healthcare facilities and I have read tons of articles on this new hospital.  It has been featured in so many Healthcare magazines so seeing it in person was a real treat!  I only wish I could have gone in and been taken on a private tour.  That would have been such a dream!  I know, it's not normal to have this fascination with hospitals.  Oh well.

The architecture and materials are amazing

I love the colors!


I didn't get to go inside but I wish I could have seen these spaces.

Nice clean patient rooms

Wide open spaces.
I'm sure some people think my fascination with hospitals is because of the kids' illness but it has more to do with my love of design and healthcare facilities.  Someday, I would love to design a facility like this.  

I also got to see another brand new hospital right by my sister's house.  It also has some great architectural details. 


PhotobucketIt is due to open soon, complete with robotics.  Who says Canadians have lousy healthcare?  It's lookin good to me!