Saturday, February 12, 2011

Our Week In Review

Monday – Silas woke up with his stomach hurting and his blood sugar a little low.  Ate very little.  Irritable and whiny on and off all day.  Took him to Nana & Papa’s that night because Autumn’s trip to Atlanta was the next day.

Called power company.  Our last two bills have nearly doubled.  Something’s wrong somewhere.  Said they would send someone to the check meter in next few days.

Tuesday – Atlanta Trip.  See post from 2/9/11.  Autumn threw up all over everybody while they were taking her blood.  Didn’t act like she felt good the rest of the day and slept most of the way home.

Wednesday – Silas woke up pretty irritable.  Took his blood sugar, and it was 58.  Ketones were 1.1.  Called Dr. W.  He had said to page him if Silas’ ketones went above 1.  He said we were fine for now as long as they went back down after eating.  Said to call him again if they stayed above 1 or spiked to 2.  Autumn woke up with a fever.  It was 102.5 all day.  Slept most of the day. 

Snow coming overnight.  Silas’ preschool closed tomorrow.

Thursday – Autumn still sick.  Silas’ preschool closed.  Nana watched the kids while I went to teach my Literature for Children class at a local college.  Autumn’s fever lowered throughout the day.  She played and didn’t nap at all during the day.  Silas’ nose runny and eyes watery – no fever.  Still not eating as much a usual.

Friday – After waking up, Autumn laid on the couch and barely moved.  She hadn’t been eating well all week since she’d been sick.  Ate a few bites of a waffle and her vitamin.  A few minutes later, she threw up.  Took her temp, but it was gone.  Took her blood sugar.  It was 44.  Called the pediatrician and made an appointment.  Autumn was very lethargic and floppy.  Wasn’t even trying to hold herself up.  Tested positive for Flu A.  (She’d already had Flu B in the fall.)  Pediatrician called Autumn’s neurologist who said to admit her to the hospital.

Arrived at hospital around 12:30.  Hospital was full.  Finally got IV fluids about 3:00 and a room around 4.  Room was two doors down from the room we had when Silas was there for 2 ½ weeks in August 2008 – bad memories.  When they took her blood, Autumn was so dehydrated that it was very thick and looked more like molasses.  And I won’t even tell you how I felt about the guy who walked in, saw the notes in Autumn’s file about her unusual gait, etc. (I’m assuming notes from her neurology visits), and wanted her to walk across the room so he could see it for himself.  (Don’t forget, Autumn at this point is still lying lifeless on the table.)  I wanted to tell him that we weren’t a side show at the circus, but I was nice.

A little after 5, the nurse said they should be bringing Autumn something to eat soon.  Kitchen called a little later.  They had been waiting for a nutritionist to help them figure out what to feed her.  Tried to explain her diet – no gluten, no corn, no dairy.  Very difficult to do in a short phone call.  She commented, “Well, gluten’s in a lot of things.”  Yeah, tell me about it.  And she hadn’t even realized yet how many things contain corn.  7:00 they finally sent her something.  Autumn was hungry and was very whiny by this point.  I hope you noticed that we’d been there 6 ½ hours before they finally gave her something.  I had a few snacks with us but not enough for the entire day.  Nana & Papa were watching Silas.  Grandmother & Granddaddy came to visit.  They stopped at Organic Harvest on the way and brought more food for us to keep in the room.  Obviously we couldn’t count on the hospital to feed her.  I know Autumn’s diet’s complicated, but they need a better plan for dealing with special diets.

Criss spent the night with Autumn.  I went home to spend the night with Silas and to grab some things from the house for the next day.

Saturday – Dropped Silas back off at Nana & Papa’s.  Returned to hospital with Thermoses of foods for Autumn to eat during the day.  She was looking a lot better and communicating more.  Autumn colored and watched videos most of the day.  She wasn’t allowed to leave the room since she had the flu.  (Although by this point her fever was gone and she wasn’t actually contagious any more.)  Everyone who came into the room had to wear a mask, apron, and gloves.  Released from hospital that afternoon.

Still have not heard back from electric company.  When we got home, our water bill was in the mailbox.  It had doubled.  Note on bill:  “Possible Leak Detected.”  How can both our electric bill and water bill get messed up at the exact same time?  Criss looked under the house but couldn’t find the leak.  No water in meter box.  Will have to try to search for leak in the yard.  Oh joy!

At least we’re all home now.  We need everyone to stay well for Criss and me to leave for our cruise.  (Criss was one of the winners of a sales competition at work again this year.  His company is paying for us to go.)  Hope all of you are having a better week than we are.  I know there are a lot of people sick right now.

If you hear Criss and I didn’t make it back to the boat in time for the departure from Mexico, don’t worry about us.  We’ll be in a hammock somewhere along the beach.J


Friday, February 11, 2011

Customer Service

I had a nice surprise this morning.  Criss said, “I forgot.  You got something in the mail yesterday,” and he handed me a large envelope.  When I saw who it was from, I felt a sense of relief – one more thing I can mark off my to do list.  It was my Alabama teaching certificate.  It was going to expire last year, so I took two classes to get the hours I needed for its renewal.  I sent everything in last September but never heard back from them.  I called to check on it last week, and they sent it without any further hassles.

I was actually surprised it went so well.  I seem to have a lot of problems finding good customer service these days.  I generally dread anything that involves calling a customer service representative.  Some of them just aren’t very friendly, and sometimes they are friendly, but the problem never gets fixed.  Let me give you a few examples…  (Hang in there with me.  I do have a point at the end of all this.)

Last summer, I flew to Virginia to take the classes I needed to renew my teaching certificate.  (Why I had to fly to Virginia to take the classes is a rabbit trail for another day.)  When I got back, my luggage wasn’t there.  They had put it on the wrong plane.  They assured me that it would be there in a few hours, and they would bring it to my house.  Several hours came and went, and I had not seen my luggage.  Over the course of two days, I called numerous times.  First they had no idea where my luggage was.  Then, they would tell me it would by at my house by this time, or by that time.  In the end, I finally got my luggage but what a hassle!!!

Just last week, there was another incident.  Silas had several DNA tests run last year.  The insurance (let’s refer to them at XYZ insurance company) has not decided whether or not they are going to pay for some of them.  I called XYZ to see what I could do to help the process along.  They needed notes from the doctor.  I called the doctor’s office, told them what I needed, and hoped for the best.  A week later, I had not heard from XYZ or the doctor’s office.  I called XYZ again.  The lady that helped me the first time wasn’t available, so I had to speak with someone else.  She couldn’t find the records from the doctor.  So, I called the doctor’s office.  They had sent the records a few days before.  The insurance company should have them.  I called XYZ again and this time was able to talk to the person that had helped me originally.  The doctor’s office had faxed the information but had not put our contract number on it.  It was sitting on the lady’s desk because she did not know whose it was.  Now, all this doesn’t even include the time I spent sending them information at the time the test was done.  So, one letter and at least five phone calls later, they now have what they need to process the claim…I hope.

This just seems to be the course of my life.  Things that should be simple end up taking days…weeks…months to resolve.  I am always pleasantly surprised when I have a nice experience with someone in customer service.  Chick-fil-A, Publix, and Target are the first to come to mind.  Even if I have to spend more money on an item, I sometimes visit one of these places just because I know they generally treat me a little more kindly than other places I’ve visited.  No matter how they feel that day, the employees at Chick-fil-A are trained to respond with certain phrases such as “How may I serve you today?”  What a nice change from the rest of the world.  At Publix, I can always find someone to help me find the item I’m looking for.  They never act annoyed that I’ve bothered them, and they will walk across the store to help me find what I need.  Target is one of my new favorites.  I was standing in a line at Christmas – not too long, but there were several people.  Someone walked up and kindly said, “Let me open a register for you.”  I nearly fell over!  In the many years I’ve shopped at “the other store,” no one has ever done that for me.

Now to my point.  At church this past weekend, several of the messages were about reaching the lost and the difficult to love.  It got me thinking.  This world is such a harsh place – often filled with so much unkindness and disappointment.  People long for someone just to be nice to them.  And when they run across someone who is, it is not quickly forgotten.  I think that’s why love is mentioned so much in the gospels.  That should be what makes Christians stand out from those around us.  It’s not that we have it all figured out or never make mistakes.  It’s that we live lives that exemplify the love of Christ to those we come in contact with every day.  In a way, we are God’s customer service representatives here on earth.  He has chosen for us to be His hands and feet, meeting the needs of those around us.

John 13:35 states, “By this all people will know that you are my disciples, if you have love for one another.”  If others were to evaluate their experiences with us, what kind of rating would we get?


Wednesday, February 9, 2011

Atlanta Trip - 2/8/2011

Yesterday we had our follow-up visit with the group near Atlanta that did all of Autumn’s tests last fall (second muscle biopsy, lumbar puncture, etc.).  While the time we spent with the Nurse Practitioner went very well, the trip as a whole was quite an event.  Should I have expected any less?

For some reason, things always seem to fall apart when we have out of town doctor appointments.  Last year we took Silas to see a doctor in FL in March, and we had Autumn’s overnight trip to Atlanta in August.  BOTH trips Criss and I BOTH had a stomach virus at the time we were supposed to start heading out the door.  This time around, things starting going downhill Monday when something (I still can’t figure out what) triggered Silas’ stomach and blood sugar problems.  For a while, I didn’t think I was going to be able to leave him with anyone so that Criss and I could both go to Atlanta with Autumn.  In the end, we were able to coax him into eating just enough to keep his head above water.

When we left the house yesterday morning, things were looking up.  We were leaving at a good time (so I thought), and Autumn was excited about having us all to herself for the day.  We stopped to grab some caffeine, and everything suddenly fall apart.  First of all, Autumn has never been a good rider, so we had packed several things to keep her occupied and happy.  While I ran in the gas station, Criss tried to get the DVD player set up for her and realized that we did not have the right cord.  There wasn’t time to go back, so we had to travel on without it.  As we started driving away from the gas station, Autumn decided to play with her iXL game.  Within two minutes of her turning it on, the batteries went dead.  At almost the same moment, it hit me…  We had forgotten to figure changing time zones into our travel time.  Instead of being early, we were now going to be late.  Not that we were speeding or anything J… but if we had wanted to try and make up some time, it would have been very difficult with the entire eastern half of Alabama under road construction in addition to the thirteen or more police cars we passed.  You would have thought it was a holiday or something.  Since I had factored in some extra time, we only ended up being 15 minutes late.  Could have been a lot worse.

I really like all of the people at the Medical Neurogenetics office.  Everyone I’ve come in contact with has been super helpful and friendly.  The first visit, we met with the doctor, but our follow-up visit was with the Nurse Practitioner.  The visit lasted several hours, and the nurse really listened to all of my concerns and was very observant.

As far as the testing they’ve done so far, her impression is that Autumn has a metabolic problem that is causing mitochondrial dysfunction (Complex I) as well as the cerebral folate deficiency.  They cannot say for sure that it is not primarily a mitochondrial disorder, but it does not seem likely as this point.  This is good news because if mito were the primary problem, Autumn would eventually begin to lose ground.  Any illness or other problem could trigger an irreversible downhill spiral.  If mito is secondary to something else, then degeneration is not as likely.

The problem is that they cannot find what the primary problem is.  All of the metabolic disorders they’ve checked for have come back normal.  They took blood to run several more tests, which we will hear back from in a few weeks.  The nurse wants to continue seeing Autumn once a year to monitor her progress and continue searching for a primary diagnosis.  They will not put her on any new supplements at this time because she has had strong, unusual reactions to several of them.  The cerebral folate deficiency still needs to be addressed, but the nurse is trying to decide the best way to approach this since Autumn reacted badly to the medication they usually use.  One thing they are checking for is antibodies to certain substances.

I found it interesting that I had just written a post comparing the kids’ lives to a house of cards.  The nurse didn’t use that exact analogy, but she said basically the same thing.  We need to continue avoiding things we know trigger fluctuations in Autumn’s symptoms.  She said that things that wouldn’t affect most people can set off all kinds of problems with Autumn’s overall health.  She also wants us to make sure Autumn is eating a protein and carb at least every 3 hours.  Fasting should be avoided.  If she has any more tests that require fasting, she will have to go in early and get IV fluids.  It’s going to take a little work to figure out the protein/carb every 3 hours (during the day).  With Autumn reacting to so many things, she cannot eat things that could be easily packed for school – like lunch meats, etc.  Besides the food intolerances, she is a pretty picky eater, and if it’s not as hot or cold as she likes it, she will refuse it as well.  Autumn hasn’t been drinking enough, and she needs to increase her water intake too.  The nurse’s other recommendations were for Autumn to see an immunologist plus have some testing that will show how Autumn is processing information.  One other concern the nurse had is that Autumn may be in more pain than she is communicating to us.  The nurse checked several areas that are “hot spots” for joint pain, and Autumn was very sensitive in those areas.

Another thing the nurse mentioned is that in the next several years, we should be able to get a complete DNA sequencing done, and that might be the only way to find the real problem.  It was ironic because that is the same thing Silas’ immunologist had told me at his last visit – only in regard to Silas’ possible metabolic disorder.

The nurse was absolutely wonderful, and truly listened to me.  We ended the visit with several labs.  While they were taking Autumn’s blood, she suddenly turned pale and threw up on all of us.  (The nurse said it was vasovagal.)  Criss was sitting beside me (with Autumn in my lap), and somehow avoided the whole mess.  The nurse was able to just remove the sweater she was wearing.  Lucky for Autumn, we had packed her an extra outfit.  Unlucky for me, I had nothing else to wear.  As a mom, you eventually get used to these kinds of things.  After the blood draw, Autumn didn’t feel so hot the rest of the day.  We stopped at a mall for lunch so we could walk a few minutes before sitting in the van for another 3-4 hours.

Even though she wasn’t feeling 100%, Autumn enjoyed us walking around the mall together.  I can already tell that she’s going to be a shopaholic when she gets older.  Once we got back in the van, she was completely worn out and slept almost the entire way home.


“So she called the name of the Lord who spoke to her, ‘You are a God of seeing,’ for she said, ‘Truly here I have seen him who looks after me.’”  Genesis 16:13

Monday, February 7, 2011

Our House of Cards

I’ve decided our life is like a house of cards.  Do you remember ever building one?  It takes a bit of skill.  You finally think you’ve got the hang of it and then someone bumps the table or a breeze blows through, and you’re back at square one again.

With years of practice, we’ve gotten better at constructing our house of cards.  We put barriers around the table to keep it from getting bumped.  We attempt to ward away the breezes.  We’ve even become more skilled in our “building” techniques.  So, when our “house” gets knocked over, each time we know a little better what to do differently the next time.  However, none of this makes us feel any less disappointed each time the cards crumble and we’re left with the pieces once again.

Some people think their kids' lives are no different than ours.  But I would say that most families are building with Legos.  Yes, they can still get knocked over and have to rebuild from time to time, but someone merely bumping the table or the slightest breeze hardly phases them.  Even if their “house” gets knocked over, it can be rebuilt fairly quickly.

It may help to picture my kids on a ladder.  If their diets have been under control and they have not had any recent illnesses, it’s as if they’re standing near the bottom of the ladder, and the affects of an offending food will not be nearly as severe.  However, if anything is the slightest bit off, they’re already standing several rungs up the ladder, and any problem that arises could be all that it takes to throw them over the edge.

When Autumn was younger, when something affected her, whether food or illness, everything went downhill at once.  She would revert back to crawling instead of walking, she was unable to communicate, and her sensory processing problems went nuts.  Now, when her “house” gets bumped, there are still signs, but not as severe since we’re able to keep her near the bottom of her ladder much of the time these days.  Winter can be worse for her, but even that’s been a little better so far this year.  I have to watch out for colds or congestion because once it starts, I may not be able to get rid of it until Spring finally arrives.

Silas is a bit more tricky.  He can bounce up and down his ladder very quickly, and once he’s messed up, it usually takes a couple weeks for him to fully recover.  We’re never dealing with just a cold, virus, etc.  We’re always dealing with the current sickness on top of his ongoing health problems.  Any illness, especially if it causes him not to eat as much as usual, aggravates the problems with his digestive system and blood sugar.  Even after everything starts returning to normal, he’s just not himself for a while and can be very irritable.

So, here I am today.  I knew something wasn’t quite right with Silas when he had problems falling asleep last night.  He woke up this morning saying his stomach hurt, and he didn’t want any breakfast.  He also said he thought he was getting a fever.  Not good.  A little while ago, his blood sugar was 67, and his ketones were 0.6.    Both are not terrible - but not good either.  What will happen today?  Will we avoid a crisis?  Will he get worse?  Only time will tell.

In the larger view of things, it doesn’t matter if we feel we’re building our lives out of cards, Legos, or 2x4s.  What really matters is what we’re building on.  Any of these can be knocked down.  When they are, what will you land on?

Matthew 7:24-27 (ESV) states,

Everyone then who hears these words of mine and does them will be like a wise man who built his house on the rock.  And the rain fell, and the floods came, and the winds blew and beat on that house, but it did not fall, because it had been founded on the rock.  And everyone who hears these words of mine and does not do them will be like a foolish man who built his house on the sand.  And the rain fell, and the floods came, and the winds blew and beat against that house, and it fell, and great was the fall of it.

 “He who dwells in the shelter of the Most High will abide in the shadow of the Almighty.  I will say to the Lord, ‘My refuge and my fortress, my God, in whom I trust.’”  Psalm 91:1-2 (ESV)