Monday, February 27, 2017

Catching Up

I should have posted right after our appointments last week but, I hit a wall.  I am completely burnt out and overwhelmed after our visits.

I returned the email to the 7 doctors who were so kind to email me.  To my surprise, not only did I get immediate responses that I reported on last week, but Wednesday, on our drive down, my email was blowing up with doctors wanting more details.  Two from NIH wanted to talk to me.  I finally had to pull over in Ogden and let Spencer drive so I could answer emails and phone calls from these very concerned doctors I have never met.

I had an hour long visit with Dr. Giri out of the NIH Genetics division.  She agreed with the other docs that we are likely dealing with 2 separate genetic diseases.  The more she explained things, the more I understand and agree.  One thing everyone agrees on is the seriousness of Shelbie's situation. I have been told by several of these doctors that we have an extremely complicated and rare genetic situation going on.  I feel like we are in a race against time.  Until they can determine what is causing all these brain issues with Shelbie, they don't know how to treat her but things just keep progressing as we sit here scratching our head.

Our appointments with Oncology went well mostly.  We started with a Nurse Practitioner who was so rude and not smart!  Shelbie's counts came back 3 times higher than normal so I said,  "She's sick that's why the counts look normal but they are very high."

"No she's not. She's fine!"  The NP said.
"When her normal white count is 1.5-2 and she is pulling off a white count today of 6...she's sick.  She's been sick for over a month and we can't seem to get her better."
"I'm telling you, she's fine!" The NP said.

Whatever...I don't argue with ignorance.  Meanwhile, my phone was blowing up with text messages!  I glanced down to find all three of my kids sending the most hilarious GIFS of stupid medical problems and dumb doctors. It was one right after the other and I could hardly contain myself.

We got to Spencer and she asked if we had received results on his stool cultures to determine why he is sick every single day...We haven't.  She proceeded to tell me everything was normal.  "So that's great news, he's totally fine."

"Except it's not.  How do you explain his continual weight loss, diarrhea etc?  He can't even eat anymore without being violently sick in the middle of the meal."  I asked.

"No, he's fine."

When we got to Sam, I just told her he was good as gold.  I just wanted her to leave the room.  And she did.

When our actual doc came in...I was relieved!  We finally got somewhere.

He recently went to an international conference on hematological disorders and our old doctor, Dr. Shimamura was a speaker.  He was able to meet up with her afterwards and they were able to discuss our case.  They will continue the conversation next week.   I also shared with him all the contact information for the 7 doctors who specialize in DC and he plans to conference with them.  I am so grateful for him!

He was pretty worried to see the latest results on Shelbie.  He is quite concerned that the Arachnoid Granuloma could be the cause of her stroke.  He wants to do an angiogram but will wait to order that after he has met with these other docs.  We also talked about the possibility that she could have the genetic immune disease I mentioned in my last post Adenosine Deaminase 2 Deficiency.  It sure sounds like a possibility.  Again, it's going to take some research before jumping into it.

We got some results back and Sam's immune system has officially crashed and his carbon dioxide is extremely high which is a sign his lungs are struggling.  I'm waiting to hear back on what we do now.  Curiously enough, Sam is home sick again!  This time, non stop vomiting.  Poor kid.  Can't catch a break.

In other news...Shelbie and Spencer are struggling in California.  I begged and pleaded for them to just come home tonight.  Shelbie is barely keeping up and Spencer is really sick.  He thinks he has pneumonia.  So, now I have Shelbie watching over Spencer.  My insurance doesn't cover him down there so if he ends up in the ER...I'm toast. For now...I'm praying we can avoid a disaster.

Clearly, we can never, ever expect anything in life to be normal. I am so frustrated with things right now.  I was kind of looking forward to being alone and catching up on work and sleep but so much for that.  It's non stop text messages from three sick kids.

Oh well...such is life.


Tuesday, February 21, 2017

You have to wonder...

This weekend, I couldn't help but think what I did wrong to end up with such sick kids. I look at their cousins who are completely healthy and normal and it hardly makes sense to me that we are in this place.  I must have been a terrible incubator and egg donor.  Gah!

I finally mustered up some courage and will to email back the 7 world renowned scientists and doctors in the Dyskeratosis Congenita world.  I was shocked to hear back from two of them first thing this morning- Dr. Bertuch and Dr. Gadir.

I sent them a long winded email about Shelbie's history and the things we are facing with Sam and his brain abnormalities. They both offered some interesting thoughts.  Dr. Gadir spoke of a very new genetic disease that affects the immune system, bone marrow and telomeres.  In the literature, two patients have been described with this disease who have chronic strokes, vasculitis, systemic inflammation and lymphadenopathy.  Sounds so familiar!  Ugh... There is a genetic test we can run on this as well.

Dr. Bertuch also suggested we revisit the genetic testing with total exome sequencing on the whole family.  That is currently being done for us at NIH.  Her theory is that we are facing at least two different genetic diseases.  Interestingly enough, this isn't the first time I have had this discussion.  NIH agrees that there is more at stake here than just DC.

In light of the progression of Shelbie's issues and now Samuel's brain manifestations, they aren't typical findings in DC alone.  Something else is wrong.

We are on our way to Utah again.  Tomorrow, we have Oncology clinic at Huntsman and will meet to officially discuss the bone marrow biopsies the kids had.  I have had the basic email reassuring me that the boys are stable.  Of course, Shelbie's marrow dropped significantly in cellularity so we will discuss that more and this new disease that Dr. Gadir suggested we test Shelbie for.  I'm also hoping we can resume Sam's brain testing while we are there.

Because I still have one thread of sanity left, Shelbie and Spencer fly out to California on Thursday afternoon for a photo shoot of a wedding they've been hired to do.  It's like the blind leading the blind.  Send the kid with the bad heart to take care of his sister with the bad everything else. Hopefully they don't pass out, seize, stroke etc. at the same time!  If they could stagger their blackouts, that would be ever so helpful.  Every day is an act of faith anymore.  I am learning to leave them in God's hands but that doesn't mean I don't go through waves of worry and anxiety...being the weakling that I am.  They will be gone a week! It'll be a long week without them.

The past few days have been so hard.  Shelbie's been pretty sick and we have to do infusion tonight since she will be gone the rest of the week.  Here's to another trip to Utah on just minutes of sleep.  I'm so exhausted, I actually considered online dating.  Maybe I could find some rich, old, retired Oncologist or Neurologist who is so lonely he wouldn't mind hooking up with the likes of us.  I could take really good care of him in exchange for some financial, emotional and physical help! The thoughts of dating were starting to scare me so I took a nap.  I'm feeling much better now. That was a close call!  My mental stability is questionable when I start thinking a man is a solution to my problems!  Geez...I'm good now, so that's a relief!


Saturday, February 18, 2017

Life Is Better

Lately, I've been seeing all these signs around that say

"Life is better..."  At the Farm
                            At the beach
                            In Flip Flops
                            At the lake
                            By the pool

Apparently, life is better when you are surrounded by water.  Sadly, I live in a desert.  That explains a lot!  Anyhow, I got to thinking, I really need to make some signs that are more realistic and applicable to me and maybe anyone else who deals with the day to day grind of what life really is!  Hard.

So, here's what I have so far...I think I'm actually going to cross stitch these on some dishtowels and pillows and start a new business.

Been here...done that this week!  Life is so much better when you aren't puking. Am I right or am I right?  I thought I was going to die so I'm pleased to find myself still here at the end of the week!  Spencer had to help me clean one night and I came running in the door on my way to puke, crying in pain and Spencer running behind me trying to get my coat off.  In my rush, I said, "Leave yourself!"  Then heaved myself on the floor in front of the toilet.  Isn't that always the moment when you wished you were puking after cleaning day? Let's keep it real!

I mean, think about it...Unless you are having a nightmare like I had last night, sleeping is sometimes way better than life itself.  Last night, I had a dream that I had to have hole drilled into my sinuses and an electronic chip stuffed up my nose.  The doctors insisted that the best place to do this was on the back steps of the hospital, while I was awake.  The nurses kept saying, "You are going to want to scream for help but don't and you will feel like you can't breathe, that's because you can't!"  And then I woke up!  So, that wasn't better than life but normally sleeping is better than this. 

You can try to stop breathing all you want but then you're just dead.  So, just a friendly reminder to breathe.  Nothing lasts forever.  Even bad days become worse or if you have good luck, the bad day actually gets better! 

This is the final truth.  Life is better lived.  It's that simple.  

Well, I hope you enjoyed this little installment of 'Life is Better' by Kat!  Isn't life so much better being lived than laying at the beach somewhere?  That's what I thought too!

Here's to better living!   You're welcome!


Friday, February 17, 2017

I Might Be Sick

Gah...more tests are back and it's not looking good.  I'm a little sick to my stomach actually.  I'm not sure if it's because I am officially conditioned to have a sudden drop in blood pressure when I open my email and read, "New results posted in MyChart" or if the news I read is the cause for my discomfort.

I haven't heard from our doctor yet to put all this together but here are the facts so far...

No signs of MS- Hallelujah!


She has what is called a Partially Empty Sella which is a flattened pituitary gland.  This is not good.  It happens due to chronic, increased intracranial pressure or atrophy.  It can be a primary problem or secondary.  They also noted a suspicious area, 'likely an arachnoid cyst but the mass could not be seen properly.'

She also has a prominent arachnoid granulation on the left side, which can be mistaken for a deep vein thrombosis! (Maybe the cause of the slowing on the left side of her brain). It can also be mistaken for Arterior Venous Malformations like she has in her lungs and around her heart.  Yet, she has granulomas all over her poor body too!  Either way...this is not promising news.

None of it is.  I feel sickened by this.

So many things are starting to make sense to me...Without a fully functioning, healthy pituitary gland you have thyroid issues, pigmentation issues of the skin, it controls an anti diuretic hormone to prevent dehydration, all female hormones, the hormones that keep us from getting depressed etc, growth hormones.

Shelbie's thyroid was non-functioning by age 5.  She has vitiligo- patches of white on her skin where there is no pigmentation.  I can't even count the number of times she was hospitalized as a baby and toddler because of dehydration.  Always!  So often, I was being questioned about not feeding her. She's a full 8" shorter than the rest of us! The feelings she gets every day of burning up from the inside?  AND...the girl had a full on menstrual cycle when she was just two weeks old!  The doctors told me it was because I had too much estrogen when I was pregnant.  I'm calling BS on that! Maybe it's all due to this pituitary problem.

The Arachnoid Granulation solidifies the stroke/chronic stroke theory a little more than it did last week or even last year.  If it's AVM's, then that means they are spreading!  If it is a true Arachnoid Granulation, then that can leak cerebral spinal fluid into her venous system and even leak out of her nose.  Then my brain starts wondering if her runny, constant nose and pressure in her face is due to CSF leaking!

The flattened Pituitary is also a strong argument to do more testing for Chiari Malformation, the same thing Samuel has.  And...a strong argument to get Sam going on his brain MRI's.  I just wonder if this is going to end up being the same in all the kids.  We haven't even started dealing with Spencer's brain issues.

Incidentally, my cousin had brain surgery last year to decompress her brain because of Chiari's.

I have asked about Chiari's a hundred times in the past year and they brush me off but now we have evidence that it is more likely.  If Shelbie doesn't have Chiari's , I will words.

Oh gosh...this feels so overwhelming.  We are in for a crazy ride.  I can feel it.  I can see things in my life changing to accommodate what's coming next.  I just know it.

Heaven help this little family of mine.

Remember when all I wished for were seizures?  This is why.  It's never the 'easy' thing that everyone seems to know least more than they know about empty Sella!  Sheesh.


Thursday, February 16, 2017

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  As I heard her discussing her fears and anxieties with the nurse, she sounded just like Shelbie.   I was glad when she broke the silence in the room by asking what was wrong with Shelbie.  I gave her a brief run down of symptoms.  She said she has exactly the same problems.  She has been hunting answers since 2014 but recently, her symptoms began getting worse.   She also told me her daughter has Epilepsy and she had a half dozen 72 Hour EEG's before they caught any seizure activity.

So...welcome to the science and practice of medicine.

Oh well.  Today was infusion day.  We were a little late getting started.  We had to cancel the nurse because of timing.   I thought I would post pictures since I talk about it all the time.  It's expensive stuff.  I didn't realize that about every three years, they suffer disruptions in production.  It's getting better in this country, but some countries have chosen not to pay donors for plasma so they run out of supply and start purchasing from countries that do pay their donors.  Hence the disruption in supply. IgG is protected by the government as a life saving medication.     It doesn't seem right that this little syringe takes 7 hours to infuse through 2 needles that go into her stomach.

The pump, in the lower right corner is nothing very technical.  It's spring loaded and the rate at which it infuses is determined by the size of the tubing and number of needles, rather than by the pump.  She infuses with two needles but some patients infuse with 4 needles.   Each patient is different and each pump is different too.  This costs us over $10,000 a month. 

Plasma is extremely thick and very sticky and if you drip on a wood surface, it cleans the finish clear off.  

So, there you go!  A little more than you wanted to know about plasma and what we do once a week for forever!


Wednesday, February 15, 2017

Always Something

Nothing much to report on Shelbie's situation.  Still no results back.  Still haven't had a chance to email our 'Dream Team' back and still putting life back together after a very rough week.

I have been sick-ish off and on since Monday.  I think probably a combination of too much anti-inflammatory meds and no food and no sleep is to blame.  Just basically run down.

I've been giving a lot of thought and prayer to my situation.  Monday afternoon, our old nurse stopped by to say hi. She had some really good ideas that I will look into depending on what they discover about Shelbie's brain.

Tuesday afternoon, I had a job interview.  In fact, I was offered the job.  It's just a drafting job.  No design, just drafting all the boring things for commercial and residential projects like door schedules. He offered me more than half of what I make on my own so that is not cool.  He said, "Having you on board means we both get rich."  Ahhh...maybe only one of us gets rich because I still have to pay 35% self employment tax which leaves me at barely $15 an hour...not a great deal for me.  Who gets rich on $15 an hour anyways?

But...I took the job.  He gave me my first project and 14 pages of drawings are due by Tuesday.  Yes, I am certifiable.  But...if this project goes well and he actually pays me on time or pays me period...then I am going to quit all my cleaning jobs. I can't even tell you how, just the very thought of not working nights, makes me feel lighter.  The every night and weekend work is hard.  I work all day and all night and never get a break.  Without being tied down to a nightly job, I wouldn't have so much stress trying to find people to work for me when I have to be in Salt Lake.   I also paid off my $8000 tax bill from 2014 this month so it makes this new job pay okay-ish.  It's still not ideal but I feel like it's the best solution to a difficult situation.

We'll see. For now, I'll be a crazy person adding an additional 15 hours of work a week until I make sure the drafting job is going to work out.  Not quitting anything yet.  In fact, I may stretch out the cleaning as long as possible so I can pay off some debt with the extra income.

So, these are good things.  I'm not complaining!  Surprise...I'm not complaining.

In other Wasband is married!  Yep.  Life is changing again.  As strange as it seems, his life decisions do affect my life even though we have been divorced 12 years! When he is single, I get more help with the kids emotionally and physically.  Even saying that sounds strange since our kids are adults but their care is getting complicated and hard and if nothing else, it was nice having him at appointments since so often, the kids are at different doctors at the same minute.  It's back to being solo in this.  That is an overwhelming thought.  


Sunday, February 12, 2017

The Dream Team

I will always be amazed at how life happens around here.  It's hard, but at the same time, it's amazing.

In the thick of things this past week, I shot off a message to the DC Facebook support group I belong to for some advice on what could possibly be going on with Shelbie.  It's a place to connect with other parents taking care of rare children too. We compare symptoms and experiences. Sometimes, its all we have.

The President of the DC group saw my message and asked if she could reach out to some specialists for me regarding Shelbie's latest brain issues.  Here's where it gets strange...The President of the DC group has a son with DC who had a bone marrow transplant last year.  She lives not far from where my parents use to live.  Not only that, her cousin is in my ward and I use to babysit his wife.  Small World!

Anyways, she sent out an email to 7 of the top DC scientists, researchers and doctors in the world, with a little of Shelbie's history.  To my surprise, I received several emails in return with each of these doctors willing to help. I really still can't believe it.  My question was if short telomeres can cause brain deterioration and if it's common in DC.  Turns out they have had experience with DC patients who experience chronic strokes, seizures and deterioration. One doctor suggested that it is due to the pulmonary AVM's which Shelbie has. They didn't offer any solutions really but it helped to know we aren't completely crazy.  Sometimes, when it's non stop problems, one can begin to question everything.

I haven't had a chance to respond to them as they each requested more information.  We are now in a group email so I will get back to them later tonight with more details.

I am grateful that I am able to make connections with amazing doctors, who offer a fresh perspective and are willing to sacrifice time to help us.

In the meantime, we wait.  We wait for the latest tests from this week.  I don't even know when to expect to hear anything and oddly enough, I didn't ask.  While we were in Utah last week, in the ER to be exact, I received a call from our Neuro-Opthalmologist  who decided she wants Sam to have a brain MRI to look closer at the low lying cerebellar tonsil issue in his brain he surprised us with last Fall.  I asked her months ago if we were going to follow up on that and she said it was mild and probably not necessary.  I'm not sure what changed for her but now she wants it done right away.

We will get there but we need to pace ourselves first.  There is so much to do and so much to think about.  The challenge this week is to just stay present instead of trying to figure all this out before the doctors do.  One moment, I am convinced they will tell me she is having seizures.  The next moment, I'm sure it's blood clots and then I feel strongly that she has Chiari's, the low lying cerebellar tonsils that is blocking cerebral spinal fluid.  The bottom line is, I have no idea so there's no point to speculating and letting my mind run wild with anticipation of the worst case scenario.


Saturday, February 11, 2017


I have my doubts if I will ever recover from this week.  I sure hope so but it isn't looking good right now.  I can't say for sure what made this week any harder than the hard things we have been through in the past.  In fact, it really pales in comparison to other events we have faced like Sam's Intussusception surgery he had when he was in 5th grade that took him down for more than 3 months, or Spencer's Encephalitis that left him unresponsive for a couple of weeks and then very sick for two months.  This week was nothing compared to the twice weekly trips we made to Boise when Shelbie's platelets would drop to 1.  The list goes on of things we have endured and bounced right back from.

For some reason, this feels as hard or harder, yet I'm not sure that it is, in reality.  Perhaps its because I was already exhausted going into the week.  Maybe it's because we have not had a single break in the action since January of 2016.  It could be that it is becoming so much harder to work and take care of my kids and that is weighing heavily on an already heavy situation.

I came home to Sam who is sick again!  I won't be at all surprised if he has pneumonia by Monday. His financial aid is screwed up and my Wasband wasn't able to take the time to sort that out while I was gone, so I have to solve that mystery sooner than later. Sam's already failing one class despite his best efforts.  He's missed just over a week of school since January.  He has to see the oncologist the week after next for two days and probably the immunologist so we can try to get this kid healthy.  He looks horrible.  When I saw him, my heart sunk!  His eyes are heavy with dark circles under them and he was flushed and almost too weak to walk up the stairs to his room.

Spencer has been in a funk for weeks!  Every day, I tell him how worried I am about him.  I kind of think he is depressed but he swears up and down he isn't.  The only time I see my old Spencer is when I sign him up to help me with a service project.  I have read many articles about depression after major health events, specifically heart events.  We haven't really talked about how his heart stopping affected him.  He kept saying he didn't care, even making jokes about it but now I'm wondering if he is suffering a little PTSD from that.  This past year has shaken his world and he had to quit every thing he had set out to do because of major health problems.  We are like a bulldozer...we just keep pushing on, burying the problems, running over them...regardless of the cost.

Shelbie has not improved.  She tries to convince herself that she is doing better but it's a struggle.  She wanted to keep her two photo shoots yesterday and she did.  She asked her friend to come over and help and I was so grateful for that.  Shelbie had another issue with her co-ordination and hands and was so confused.  She thought she was doing a newborn shoot so she had everything set up for that.  A 5 year old boy showed up.  She still didn't clue in that she was taking his picture.  They stood there until the mom said something.  This is not like Shelbie at all.  I don't understand what is happening to her.  This morning, she is really sick so she had to cancel her two shoots today.  

The reality of our difficult situation is taking its toll.  I am becoming increasingly worried about how I can make a living while supporting three adult children who have hopes and dreams and want to succeed in life but just can't right now.  Up until now, they have been able to work enough to cover their expenses and even help out a bit with the family budget, but they can't do as much as they use to anymore.  Even working jobs I can do from home are becoming difficult because my time is spent on medical stuff and then work and then sleep. I'm plain worn out.  I fear that Shelbie will lose her clients because she is sick all the time.  It brings her so much joy and she has a gift.  I can't have three kids too sick to do anything purposeful in life...can I?  That just opens a whole new world of challenges.

She won't advertise this, but she entered a photography contest three weeks ago.  There were nearly 400,000 entries!  There are twelve rounds and the winner gets $10,000.  (I think)  None of the photos are marked with the photographer's name so voting is strictly on the merits of the photo, not by who has the most friends who rack up votes.  She hasn't asked anyone to go to the website and scroll through and vote for her.  So, any vote she is getting comes from complete and total strangers all over North America.  She has made it to round 5 and 300,000 photos have been cut!  She is in the top 100,000 which to me, is impressive for a self taught, 24 year old girl who built this business on shear willpower and prayer. She has received 100 "Favorite" votes from strangers and that is incredible to me.  People who loved her picture so much, they wanted to keep it at the top of the list.  Whether she wins or not, makes no difference she has already found her place in the world of amazing family photographers.

I know we have been in this same sort of hard spot before and I know we won't remain stuck here forever but's no fun!


Thursday, February 9, 2017

Seek First to Understand

Things went downhill so fast and so hard.  After the two events yesterday, I thought that might be the extent of our excitement for this trip.

Just after 1 am on Wednesday, Shelbie felt horrible and I found her laying on the bathroom floor.   It wasn't much longer that she started violently throwing up.  I was so worried.  I've never seen anything like it before.  It went on and on.

That started a domino effect. It took until 7 am before any of the anti nausea meds or pain meds started working. It was such a long a hotel room with very few resources and the poor thing is still connected to 30 wires and isn't allowed to shower or bathe until Thursday night so being this sick with all this other stuff going on really sucks for her!

She slept until about noon.

By 1 pm, she was crashing again and I thought we just needed to get to the hospital.  She could hardly walk and pain radiated from the top of her head to her toes, straight down her spinal chord. We sat in the parking garage, in the car while I made calls and sent emails to some of our doctors.  A nurse called me right back after I left a message and said that the doctor wanted Shelbie in the ER with a neurology consult.  I was really angry!  I hate the ER and it seems like we go and they just end up scratching their head because we overwhelm them. It's been a long time since I was so angry actually.

 I found a wheelchair, loaded her up and we went straight to the EEG lab.  It was shocking to see the condition she was in, slumped in the wheelchair, compared to the day before when she was fine.  They were really good with her.  Oddly enough, we had the same tech we had when Shelbie was inpatient at Huntsman back in November with her stroke.  He remembered her and was so kind.

This picture absolutely kills me.

From there, we went down to the main doors to decide what to do next.  The thing that kept running through my head from late the night before, to now, was 'Seek first to understand.'.  So, instead of being angry and upset, I took her to the ER.  Low and behold...they got her right in!  We bypassed the packed waiting room and went straight to a trauma room.  We had to share the room with a man who came in a few minutes later suffering from a Heroin overdose but they started Narcan incredibly fast and the guy was out.  I was actually afraid he had died.

So, there's Shelbie and Don- the heroin guy and wouldn't you know it...the guy on the gurney outside the door was the same crazy, angry, cussing man from three weeks ago!  What the heck are the odds?  I tell you, this can not just be a coincidence!  Seek first to understand.

The ER doc came in swiftly, did his assessment and a nurse parked herself at the end of the bed keeping a close eye on Shelbie. They got an IV started and pain meds on board and soon she was sleeping peacefully...and so was Don and the guy outside the door was calm for a change!

And...wouldn't you know it...I was shocked to see who came through the door next.  The neurologist!  Not just any neurologist...the same one who said to my face in November, at Huntsman that Shelbie's EEG was textbook normal!  I saw his face and as he introduced himself again, all I could think of was cramming his stethoscope down his throat! But the words pounded in my head...Seek first to understand.

I don't know exactly why this week has unfolded the way it has.  It's strangely purposeful and profound.  I keep thinking that it's good all this happened while Shelbie's brain is being monitored non-stop.  Maybe there are answers to come because of all this.  As for Dr. P, the neurologist, he was singing a different tune today after reading over his own lousy notes from November and the notes of our new Neuroimmunologist and seeing that there really is something desperately wrong with this girl and it's far from textbook normal.

He and I actually ended up having a good conversation that I think we both learned from.  He finally admitted that Shelbie is a little out of his realm of expertise but at the same time, provided me a good starter education on seizures, strokes, multiple sclerosis and central nervous system dysfunction.  I was 'proud' of him for consulting several other neurologists before dismissing us.  His exam showed some distinct differences in Shelbie's sensation between her lower extremities and upper as well as side to side.  He asked her an interesting question- if she experienced frequent Deja Vu to which Shelbie answered yes!  Which was shocking to me.  Deja Vu experiences have a direct correlation to Temporal Lobe seizures and those kind of seizures have GI side effects like vomiting and can damage the brain in patterns we have seen.

At this point, we don't know what is happening to Shelbie but it's scary. Multiple Sclerosis seems to be back on the table as possibilities and that terrifies me!  They offered to admit her for observation but there are so many sick people there, she really will be safer at the hotel.  They loaded her up with Morphine and Zofran, put her back in a wheelchair and we left 7 hours later.  She left with a fever!!!  It just never ends.

So what about Don?  I've been really angry all day.  Partly because I'm exhausted and haven't slept since Tuesday.  Partly because I'm just scared and it's easier to be angry than to admit defeat as a mom, as a caregiver, as a everything!  When they wheeled Don in and he's literally right next to Shelbie and unconscious,  I hear his whole story as the docs worked to stabilize him.  He seemed like a good person to unleash my judgments and anger on.

'His filthy body and unkempt, greasy dreadlocks make me angry.  It's people like that I hate, who take up beds in hospitals, make insurance un-affordable for the rest of us and waste the time of medical staff who should be caring for real sick the two dozen sitting out in the waiting room!' He doesn't deserve to be taking up a bed just because he can't make good choices in his life. Maybe he should try working for a living like the rest of us.  Maybe get up and face life with a little courage instead of wimping out with drugs"   My thoughts about this guy were ugly and very harsh and contrary to the kind of person I am. I don't know why...

But...I watched the nurses and doctors treat him with the same kind of caring they treated Shelbie.  They seemed to be full of compassion for him. The more I sat there watching them care for him, the more I was filled with love for Don and the more compassion I had for him and the more I could see that he was no different than me or Shelbie.  I know better than to think those things I did in my frustration.  I know better. I know that people who are lonely, lost, hurting and scared are turning to drugs like Heroin because they have no one else to turn to.  I know what that kind of loneliness feels like. In a lot of ways, his pain was far more remarkable than Shelbie's. We all have our vices and our sins may look to be at opposite ends of the spectrum but we all hurt, we all struggle, we all have 'our' thing that keeps us numbed out just a bit or a lot because life is hard and life is heavy!   Some of us have people who love us through and hold on to us for dear life and some of us don't...we go it alone.  Don was completely alone. Seek first to understand.

So, that is today in a nut-shell.  It was so hard!  So hard and so lonely and so scary.  I spent time in the same bathroom stall praying, that I did three weeks ago.  When the attending came in to let us know the plan for the night, I left to get to the hospital pharmacy before they closed.  As I stood there, I was really wishing I knew someone I could call to give Shelbie a blessing.   About 10 minutes later, three men walked past in polished black shoes, white shirts and dark suits.  I didn't see their faces but from the back, I just knew they were leaving the hospital from giving a priesthood blessing.  I called after them but didn't dare leave my place in line to chase them down since the pharmacy was closing in 10 minutes.  They didn't hear me.  When I got back to Shelbie, she said, "I would do anything to have a blessing."  Another epic failure for me.  I should have acted on that prompting at the pharmacy.

Seek first to understand.  While I have had a tremendously hard day in a million more ways than I have written about today, I will continue to hold on and be led to the next best thing for Shelbie.  I know without a doubt that everything that happened today had a point and a purpose.  There is no waste in suffering.

On a merciful of the ER Co-ordinators is the grand daughter of my very good friends, the Wests.  I took care of her grandma who passed away from complications of Multiple Sclerosis and then watched over her grandpa as he struggled with her passing and diabetes complications.  Shelbie took A's photos for her modeling portfolio.  I ran into A as I left to go to the pharmacy.  She gave me a big hug and kindly offered to sit with Shelbie til I returned.

God is good and I don't always understand what he is creating in me but I will keep trying to understand.


Tuesday, February 7, 2017

Day 2

Today has been a better day.  Shelbie was able to sleep well last night and that made all the difference in how we managed the day.

It's interesting to see people stare at her.  It's not really a big deal.  A couple of people stop and ask what is wrong with her.  One guy stopped to ask her what was going on with her head.  He wondered if she had had brain surgery.  He then went on to talk about every member of his family who had some sort of brain problem.  With each little story, I said, "Oh wow!  I'm so sorry."  and with each little story, he replied, "Oh it's okay, they are dead now."  Seriously...he had nothing but dead people in his family from brain problems! She's a brave girl.   It reminded me of when she went back to school after being gone for two years for chemo.  She went back with half a head of hair.  I spent a fortune on a wig for her, wraps, hats and she just went without.

We had a really good talk today about her situation. We don't talk very often about reality.  We seem to just barrel through and keep moving.  Sometimes, I think we honestly believe if we run fast enough, we will escape the sorrow that is always there waiting to be acknowledged.  This situation with her brain is really starting to interfere with her day to day life in ways I didn't understand before today.  It made me sad to talk to her.

She had an event just before dinner.  She had that lofty feeling like her brain was floating around in her head and then she had a really hard time with co-ordination.  We pushed the red button and we will see what they say about it tomorrow...if anything.  Probably too soon to get any results.

Tomorrow, she has to have her transfusion so I will be on my own for that and we will start it here at the hotel.  The pump is pretty mobile and so is she, so we will just haul it up to the hospital when we go.

I've never looked at my kids and seen disease but this week has been hard, I won't lie.  Tomorrow, I imagine is going to be a tough one too.


A little glitch

Last week, out of the blue, our Neuroimmunologist emailed me to see how Shelbie was doing with the flu and mycoplasma, which caught me off guard because, what doctor calls to check on a patient with the flu?   I told her she was on the mend and then she asked about seizure activity.  Shelbie has had a couple of episodes in the past week of being confused and problems with her speech again and a couple of times she fell while standing in the kitchen.  It has become so common anymore that I don't consider it a 'problem' but just the way it is anymore. When I think of seizures, I think of eye rolling, unconsciousness...not confusion, memory issues, word finding issues, etc.

A short while later, the doctor emailed me back and said she wanted to consulted her epilepsy colleagues because she felt they needed to follow up with these issues sooner than later. Friday, we were contacted that they were ready to have her checked in for a week long EEG of her brain.

It took some serious scrambling to make this work but she is wired up and we have day one under way.  I had to reschedule some doctor appointments we had back home for the kids, two job interviews and one presentation.  That eye of Spencer's...I'm going to miss his third appointment to figure out what to do with his poor eye!!'s been a sort of rough day.  Poor Shelbie has clearly reached her threshold of dealing with these issues.  She's been pretty upset all day and usually, she takes it all in stride.  We've done so well at pushing the reality of this situation so far from us.  She has 30 wires attached to her head and chest and they will stay there until Thursday night.

She is allowed to leave the hospital for the night so we are staying in a hotel.  During the day, we go back and they replace wires and batteries, download information, review the information and I'm not sure what else will happen. We'll see tomorrow.  I had read that they were suppose to wrap her head in a gauze wrap to protect the wires and  such but they had run out of wraps so we had to leave with her looking like a zombie.  We walked from the third floor of the hospital, through the clinics, down the main corridor, past Starbucks with Shelbie sobbing and a pony tail of wires, and her pack of monitoring equipment.  Let's just say, we didn't exactly disappear in the crowds.  

We went to Target to find a scarf or beanie she could wear so she doesn't scare people and I thought it would help her calm down a little and distract her.  But I forgot, we are in crazytown!  When you only have one nerve left, Salt Lake is perfect for fraying that quick, fast and in a hurry!  A man walked in to the store and he was possessed!  The noises coming from his mouth were not human.  He was loud and scary and you could feel the entire store shudder.  His voice boomed through the air and he was walking towards us.  I just froze in unbelief and Shelbie went into full blown panic.  It was a rather scary moment.  We grabbed the nearest scarf and got the heck out of there.

When they started the scan, the entire screen looked like a scribbling mess of a 4 year old.  The tech said, "Oh my!! Calm down honey! Look, just calm down.  You're okay!"  She spent about 10 minutes just getting some sort of normal brain pattern on the screen by doing some breathing exercises and relaxation things with her.  I had no idea how much stress affects your brain waves!  No wonder I can't concentrate on anything, my brain must be a total mess!  Shelbie's started looking better after a bit.  She said I need to keep her calm and relaxed!  Funny.

The best we can hope for at this point is seizure activity.  I always find myself saying the craziest things but seizures can be managed.  Strokes, Central Nervous System problems and brain deterioration due to shortened telomeres are all unmanageable and progressive.  I can't imagine that that becomes our fate.

We are a little on edge this week.  A little nervous.  A little upset.  A little of everything.  As recent as Sunday, she had an episode of word confusion.  It lasted a couple of hours.  I really hope they catch something.  I really hope we get some answers at the end of all this and hope she has many more good years with this poor brain of hers!!


Thursday, February 2, 2017

There goes my mind...

Truly a strange day.  I'm surprised I survived.

Spencer's been trying to sell a car so he can buy his van.  So, in less than 12 hours, it sold.  I was full of all sorts of anxiety over the whole deal.  And there isn't enough space in the internet to get into the details of that but...whatever.  So, he was suppose to meet the buyer at the DMV later in the afternoon.  Since the car is in my name, I had to be there.

So, by late afternoon, the people  to buy the car arrive and we meet them.  He said, "Do you mind if I take it for a test drive?"

"Sure!" Spencer says.  All sorts of crazy came unleashed in my mind!  Don't laugh...this is my every day!  Okay laugh...let's face it!  I've lost my ever loving mind!

"Should Spencer ride with them?  Should I ride with them?  What if he is here to kidnap us and steal the car?  Do I really want to live through that?  We should just let them have the car! Maybe I'll just send Spencer...I have too much responsibility, he has nothing!  But what if he gets buried alive in a shallow ditch and I never find him?  I couldn't live with myself!  I better go.  I don't want to die today, I don't know if I made my bed and the bathroom probably needs to be cleaned.  I can't go.  It's better that just one of us dies.  No!! I'll go. What kind of mother sends their kid with a total stranger from a different city far from here?  This mother does and I don't care!  The guy just wants a car, not two lousy, scrawny people like us.  Look at him though, he is three times the size of either one of us.  Oh geez... Okay, .I'll go!" 

This conversation took place in my head with my other committee members of crazy that live inside my just under 10 seconds.  Next thing I know, I am clutching the seatbelt and praying a prayer like I have never prayed before, in the backseat of that car.

Then the guy says..."I'm going to take it out on the highway and don't be surprised if I really get to know how it handles."  

'Oh, sweet mercy!  Please don't let me die! Why did I come?  He is kidnapping us. I know that is what is going down.  Test driving the car my foot!  I hate my life!  Why?'...  I texted Spencer before getting 911 ready to dial on my phone at the first inch past the exit back into town..."My heart is about to stop!  Just sayin'. I love you!"

But, when the guy did take the right exit and I channeled some borrowed courage, I decided to try to make conversation with him.  No one wants to kill someone you've established a connection with...right?  His wife was in the front seat, (Yes, his wife was with him....I know.  I have trust issues!  Leave me alone.) Turns out she was pregnant. ( I know...I need help.)  They were from Mississippi so their southern accent was hard for my one good ear to decipher.

Turns out they were really nice people with trust issues too.  I hate my stupid brain!  Anyways, I noticed that he had some pretty wild tattoos across his knuckles and wrist and hands but they had all been blackened so they were all just now solid rectangles.  He asked if there were a lot of Mormons in this town and Spencer started talking about the church and his mission.  He asked if they knew anything about the church and the guy said he didn't but he had seen some young missionaries once on a "crusade."

He said, "I respect Christians and all but I'm not one.  I know that Mormons have some good values.  I wish I had been raised with some good values.  I had to take the long way around to being a good person.  There's one thing I just don't get about Christians."

"What's that?"  Spencer asked.
"I don't understand the whole thing about repentance.  I don't get why you have to go in and confess and repent every day.  Why don't you all just live right the first time?  Why can't you just not sin?"

I was so proud of Spencer to see him in action as a missionary!  Meanwhile, I'm still white knuckled in the backseat.

Turns out, I'm glad I went on that little drive.  His simple thought made so much sense to me...why not just live right the first time?

Once we got inside to the DMV and they paid us cash and we signed the 72 page bill of sale I made,  (Just kidding...I did make a bill of sale though but just a page) He asked to see my driver's license and spent a great deal of time studying that to make sure it all matched the Title etc.  He made it clear that too many times, he had been lied to and taken advantage of.  So really, we were kindred spirits!

By the time we left just over an hour later, I was overwhelmed with love for these total strangers who I had already been kidnapped my head of course.  I wanted to give them back their money and just let them have the car.  They clearly didn't have much.  He worked at Walmart somewhere in a distant city and he was just trying to get his wife a good car for when the baby arrived.  He was clearly a very loving and kind man who really seemed to understand what it means to be a child of God.

I think I have to wake up and prove my worthiness over and over and pout over my imperfect ways and repent and repent and try again and again and beat myself up for being 'less than',  instead of just accepting that I have worth no matter what, to my loving Father in Heaven.  Maybe I just make life so much harder than it needs to be.  Live right the first time.

I look at the world and all the anger and division and then I see the opportunity I almost missed to get to know these people.  They taught me great lessons today about loving one another, tolerance and not to judge...which is even more interesting because I've been on my high horse this week about judging. I even sent Spencer a long winded email about not judging things that seem impossible and giving God a chance to show us the meaning in impossible things.   My day would have been fine without the experience but it was made better because of it.

I just really need to keep my mind from escaping from me!  Seriously.  I am the high jump to conclusions winner!  A clear winner.      


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