Friday, May 27, 2011

ER, Neuro, and Elbow

Tuesday afternoon Autumn was trying to climb into an outdoor chair when they both tumbled over.  She hurt her elbow in the process.  The after hours nurse told us to take her to the ER.  They said it was Nurse Maid’s Elbow (where the bones in the elbow are pulled out of place).  They tried to put it back in place and sent her home.

Yesterday was the appointment with Autumn’s neurologist that is here in town.  The EKG & EEG from last week were normal.  It was only a 30 minute test, so the doctor said that if Autumn had any more seizures, we would do a more in depth test.  She’s also scheduling Autumn for several follow-up appointments with a dietician, and eye doctor, etc.  With Mito, things can sometimes show up in the eyes, so they check every year or two.

I was telling the Neuro about how much the extra protein (that the doctors in Atlanta had recommended) was helping Autumn.  She’s happier, not eating her hair any more, her nails are stronger, and she’s suddenly gained THREE POUNDS in just a few months.  That is big for her.  She can go an entire year and gain just a pound or two.  I was discussing Autumn’s diet just a bit and asking if she knew of any hypoallergenic protein drinks that might help.  Besides needing to avoid gluten, corn, and milk, Autumn is VERY picky.  I told her that just this week, Autumn suddenly decided she doesn’t like eggs any more and now refuses to eat them.  The neuro commented, “Well, don’t let her.”  It’s obvious she doesn’t live with a child with a sensory processing disorder.  I’ve learned there are certain things you can’t make a child do.  Eating is one of them.  Sure, you can try many different things, but if they don’t want to eat, they’re not going to – especially if they have sensory processing issues. 

The Neuro also said that we may want to try her back on gluten again.  I’m not sure what that will help.  She’s getting plenty of carbs from millet and rice based products.  The biggest problem is the intolerance to corn – which is literally in nearly ALL processed food in one form or another.

We are also going to add back in a couple of the medications/supplements.  Atlanta had Autumn try Leukovorin – which made her go crazy and tear apart everything in the house.  We are going to try it again – but at a much smaller dose and then try to work up from there.  We are also adding back CoQ10.  The Leukovorin is to correct the Cerebral Folate Deficiency, and the CoQ10 is used for mito.

At this point, Autumn still did not want to use her arm, and you couldn’t touch it without her screaming, so after we finished with the neuro, I set up an appointment with the pediatrician (who I still really like).  She then sent us to an orthopedic doctor who looked at the very same x-rays that the ER looked at and said that it IS fractured.  Autumn fractured the proximal radius in the elbow.  She now has a long cast the starts just below her shoulder and runs the full length of her arm.

So, yesterday, we left for the doctor around 9, ended up seeing three different doctors, and made it back home around 5.  What a day!  The one positive is that is the cast is waterproof and only has to stay on two weeks.


Tuesday, May 24, 2011

Updates - 5/24/2011

I finally heard back from the group in Atlanta that Autumn had a follow-up with in February.  They haven’t sent me the full report yet, but it didn’t sound like they found anything that would give us any further direction.

Autumn had her EKG & EEG last week.  We see her neurologist this Thursday, so I’m guessing we’ll get the results then.

We did get the results from the rereading of Silas’ old biopsies.  Some of eosinophil counts appear to be borderline or slightly elevated (even though he was only on elemental formula at the time).  Our GI here agreed to refer us to another GI in South Carolina who specializes in eosinophilic disorders.  Looks like we’ll see Dr. M the end of June.

Yesterday, Autumn had her Kindergarten Graduation / Awards Ceremony.  She had a great year and is headed to first grade!  Silas finished the year with his preschool class with a bowling party today.  He was so excited and had a lot of fun with his friends.

I’ll give another update after the visit with the neurologist.


Wednesday, May 18, 2011

Disaster Relief - Pleasant Grove (con't)

Here are more of the pictures from the day Criss and I helped in Pleasant Grove.  One thing that struck me was the things we saw in the trees.  Below you can see someone's bedding.

This is one of several trees that had metal wrapped around it from the strong winds.  You can also see someone's shirt towards the top of the tree.

Just as the weathermen always tell us, if anything was left, it was the center of the house.


Look carefully at the closet in this final picture.  Everything around it has been destroyed, and yet, in the middle of it all sits this closet with all of the clothes still hanging in it.

What a perfect picture of our lives.  When life is in turmoil and everything is a mess around us, may we have the peace of God within us.

"He who dwells in the shelter fo 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


Saturday, May 14, 2011

The Trees

As I drive through our storm ravaged area, one thing that stands out to me is the trees.  There is a road near our house that has the most magnificent trees.  I don’t even know what kind they are, but they’re definitely not spindly little pine trees or anything of that sort.  Massive in height and width, they have strong branches that stretch powerfully to the sky.  Just their presence makes you feel secure and at peace.  They would make a beautiful portrait in their own merit.

However, many of them have been damaged by the recent storms.  What used to be so beautiful is now only a remnant of its former glory.  Some were knocked over – roots and all ripped from the ground.  Others were snapped in two or mangled beyond recognition.  Most of their leaves are now beginning to turn brown from the lack of water as they lay helpless on the ground.

What struck me today as I drove by the trees is how much I can relate to them.  I’ll try to describe it to you using a couple quotes from the movie, My Sister’s Keeper.  If you haven’t seen it, it’s about a girl who’s dying of cancer and her family.  The first time I saw it, I cried through the entire movie because I could relate so much to their feelings.  I think anyone who has a child (or children) with a chronic illness can relate to them.

Here’s a line from the opening scene:

Since my sister got sick, things have changed.  Aunt Kelly only works part time, and mom quit her job as a lawyer.  Her life now revolves around keeping Kate alive.  Cooking and cleaning – everything steamed, organic, and germ free.  I guess you could say that we’re a little dysfunctional, but everybody loves each other, and we do the best we can.

Dad speaking (two separate occasions):

Having a child who is sick is a fulltime occupation.  Sure, we still enjoy the day to day happinesses of family life - big house, great kids, beautiful wife.  But beneath the exterior there are cracks – resentments, alliances that threaten the very foundation of our lives.  As at any moment our whole world could come tumbling down.

Well, I think we’ve all been perverted by the mechanics of just keeping Katie alive sometimes.  I’m sure we’re all broken in ways we don’t even understand yet.

The daughter makes a scrapbook for her family.  These are some of her thoughts:

This is it.  I know I’m going to die now. 
I supposed I’ve always known that.
 I just never knew when. 
And I’m okay with it…really.
 I don’t mind my disease killing me. 
But it’s killing my family too…

I’m sorry, Jesse. 
I’m sorry I took all of the attention
when you were the one who needed it the most.

Dad, I know I took your first love from you. 
I only hope that one day you get her back.

Mom, you gave up everything for me: 
your work, your marriage, your entire life –
just to fight my battles for me every single day.
 I’m sorry you couldn’t win.

Having kids with chronic health problems is not just about the times when they’re terribly sick.  It’s also about the good days.  You savor every moment of them.  At the same time, it’s like dancing on egg shells.  You are so careful not to allow anything to cross their paths that might cause them even the slightest relapse.  It’s a 24/7 job that never goes away – like walking an infinite tight rope… an endless sea of broken trees.

As I passed by the trees today, another thought also came to mind.  I was reading in Isaiah a few days ago, and one phrase in particular jumped out at me.  I wasn’t sure why at the time, but as I drove, God brought it back to my mind.

“The Spirit of the Lord God is upon me,
because the Lord has anointed me to bring good news to the poor;
he has sent me to bind up the brokenhearted,
to proclaim liberty to the captives,
and the opening of the prison to those who are bound;
to proclaim the year of the Lord’s favor,
and the day of vengeance of our God;

to comfort all who mourn;
to grant to those who mourn in Zion –
to give them a beautiful headdress instead of ashes,
the oil of gladness instead of mourning,
the garment of praise instead of a faint spirit;
that they may be called oaks of righteousness,
the planting of the Lord,
that he may be glorified.” 

Isaiah 63:1-3

After looking at the verse again, I decided to dust off my Strong’s Concordance and do a little research.  I wanted to look at the word called.  Other words the concordance used were proclaim, pronounce, say.  Although my “tree” right now is feeling battered and torn, God can look past it all and proclaim or pronounce me to be an oak of righteousness for His glory.  I find something very beautiful and comforting in those words.

I will leave you with the lyrics to a song I love right now:

“Blessings” by Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise


Children's Literature

I still need to finish posting the rest of the pictures, but I’m going to venture off-topic for a moment.  (I have dial-up, so it takes me FOREVER to post pictures.)

This spring was the third year that I’ve been asked to teach Literature for Children at a local college. (For those that know me, it’s at the college where I earned my undergraduate degree.)

Every year, the students rate their favorite books.  Thought I would share their top choices with you:

1.    The New Kid on Spurwink Avenue – Great book!
2.    All Tied for 2nd
a.    I Love You Like Crazy Cakes – A story about adoption.
3.    Tied for 3rd
a.    Officer Buckle and Gloria – This one is hilarious.  You have to look closely at the pictures.
c.    Falling Up - Poetry

1.    Who Is Sam Harrington? – This one made the list twice.
4.    Tied for 4th
a.    Jazz Fly – Book and CD.  Very catchy little tune.
5.    Drummer Hoff

1.    Amelia Bedelia’s First Day of School – This is one book in a new series based on the classic Amelia Bedelia books.
2.    The Tale of Three Trees – Great book!
3.    Who Is Sam Harrington? – You’ve gotta read this one.
4.    The Mitten – Fun book with beautiful pictures.

Others that I like
·         Snowmen at Night – So cute!
·         Guess How Much I Love You
·         Charlotte’s Web – Makes me cry every time.
·         The Velveteen Rabbit – This link shows the version I have at home.  I LOVE the pictures in this one.

Hope you will comment with some of your favorites.


Monday, May 9, 2011

Disaster Relief - Pleasant Grove

Sunday morning, Criss and I volunteered at a church in Pleasant Grove that is providing supplies, food, and other services to those affected by the tornadoes.  Here are some of the pictures I took of the area while we were there.

Sometimes a lonely driveway was the only sign that a house once occupied the ravaged parcel of land.  (Note the driveway to the left in the picture below.)

We were amazed by the mangled steel beems.

I'll have to post the rest of the pictures later.  Seeing it all in person made my stomach churn.  Continue to pray for all those affected by the storms.


Sunday, May 8, 2011

Mother's Day

I’ve had the most wonderful Mother’s Day weekend.

Last night, we had both of our mothers over for dinner.  I’ve listed some of the new recipes I used below.  We bought both of them I Love You, Grandma (recordable books from Hallmark).  It took a little effort, but we made it through the recording of both books (with a 5 and 6 year old), and they turned out great!

This morning, Criss and I volunteered at a local church that is helping with disaster relief.  We were stationed outside under a canopy where we greeted people as they arrived, unloaded donations, and assisted people who were looking for supplies.  I even got to hold the cutest little baby while her mom was busy gathering supplies.  I asked Criss’ mom if the kids could go to church with her this morning while we were volunteering.  She was thrilled to have them with her on Mother’s Day, so it worked out well for everyone.

After we came home, I got to sit and read while Criss prepared a special dinner.  Boy, did he do a great job!  He cleared everything off the back porch, put down a piece of carpet, and added a small table.  He strung lights and added flowers, candles, and torches.  It was gorgeous!  It reminded me of a restaurant we once went to at the Opryland Hotel.  The food was amazing as well, and I felt so special.

Here are some of the new recipes I used for the dinner with our moms.

Potato Smashers

8 small new potatoes, about 1 ½ inches in diameter
½ cup water
4 slices bacon
2 tbsp Zesty Italian dressing  (I may try it with just oil next time.)
½ cup sharp cheddar cheese

Place potatoes and water in 2 quart microwavable dish.  Microwave, uncovered, on HIGH 10 min. or until potatoes are tender.  Let stand 5 minutes.  Meanwhile, cook bacon.

Drain potatoes; place on work surface.  Press each potato with bottom of small bowl or saucer to flatten to ½ inch thickness.

Heat dressing in skillet on medium heat.  Add potatoes; cook 4 minutes or until bottoms are golden brown.  Meanwhile, crumble bacon.  Turn potatoes over; sprinkle evenly with cheese and bacon.  Cover skillet with lid.  Cook an additional 2 minutes or until cheese is melted.

Creamy Caesar Coleslaw

1 pkg. (16 oz.) coleslaw blend
1 cup classic Caesar dressing
½ cup grape tomatoes, halved

Easy Oreo Truffles

1 pkg. Oreo cookies
1 pkg. (8 oz.) cream cheese, softened
2 pkg. (8 oz. each) Baker’s semi-sweet baking chocolate, melted

Crush 9 of the cookies to fine crumbs in food processor; reserve for later use.  (Cookies can also be finely crushed in a resealable plastic bag using a rolling pin.)  Crush remaining 36 cookies to fine crumbs; place in medium bowl.  Add cream cheese; mix until well blended.  Roll cookie mixture into 42 balls, about 1 inch in diameter.

Dip balls in chocolate; place on wax paper-covered baking sheet.  Sprinkle with reserved cookie crumbs.

Refrigerate until firm, about 1 hour.  Store leftover truffles, covered, in refrigerator.



Tuesday, May 3, 2011

The Aftermath - Alabama Tornadoes - Part 3

Tomorrow will mark one week since the tornadoes destroyed our area.  Power has been restored to the majority of the nearly 1 million households originally without electricity.  The death toll for our state is currently somewhere around 250, but hundreds are still missing.

It is hard to fathom the extent of the damage.  The news agencies continue to report on additional cities that have yet to make the news.  There are just too many to report.  Well-known cities, like Tuscaloosa, received immediate help, while it was several days before some of the smaller communities received assistance.  One scene from the movie Twister continues to run through my mind:

Joey:   Now, that was a good size twister. What was it, an F3?
Bill:   Solid F2.
Melissa:   See, now you have lost me again.
Bill:   It's the Fujita scale. It measures a tornado's intensity by how much it eats.
Melissa:   Eats?
Bill:   Destroys.
Laurence:   That one we encountered back there was a strong F2, possibly an F3.
Beltzer:   Maybe we'll see some 4's.
Haynes:   That would be sweet!
Bill:   4 is good. 4 will relocate your house very efficiently.
Melissa:   Is there an F5?
[Everyone goes dead silent]
Melissa:   What would that be like?
Jason 'Preacher' Rowe:   The Finger of God.

I am overwhelmed with thankfulness that we were spared.

After Wednesday’s storms, we spent the night at home (still unable to get out of the driveway due to the downed power lines).  The next day, someone from Criss’ work came to help him try to get his work truck out of the yard.  With the help of a 2x4, tree cutters, and a little tree climbing, they were able to fish the lines out of a tree so that we could leave the house. 

Songs from Louie The Lightning Bug continue to run through my mind.  When the lines first fell, I stressed to the children the importance of never playing around power lines.  Now that they’ve seen their dad climb a tree to knock them down and we’ve been driving over them for a week, I’ve resorted to stressing that in the future, they should never again be around or drive over downed power lines. J

Thursday morning, Criss headed to work while I got us packed for what I knew would be several days at Criss’ parents’ house.  That is another thing I am extremely thankful for – Criss’ parents live a county south of us, and they still had power.

Part of the problem with the power being out is that my kids have such unique health needs involving special diets.  Criss and I could live on dry cereal and bread for a while if we needed to, but the kids HAVE to have their special food or they can end up a total mess.  I was able to move their bread (that I special order from Florida 32 loaves at a time and keep in my mom’s freezer) and the 20+ bags of Silas’ chicken nuggets that I had just bought while they were on sale and get them to my in-laws’ freezer before it all ruined.

This is something that people rarely think about during crises such at this – the impact is has on children with special needs and their families.  I cannot even imagine having to stay at a shelter for even a day with my children.  There would most likely be absolutely nothing that Silas could eat.  If he was forced to eat whatever was available, he could be having those terrible screaming spells within a day or two – all while sitting in a shelter with hundreds of other people.  (Don’t you know they’d love us.  They’d probably take up a special collection just to get rid of us.J)

After four days without power, we were able to return home Saturday evening.  Autumn was finally able to return to school today.  Communication has been difficult, and I continue to hear reports of family and friends who have been affected by the tornadoes.

What are we to do when we are faced with such heartache and devastation?  The Bible tells us to focus on the truth (Philippians 4:8), but sometimes the truth is not pretty.  What do we do when (literally or figuratively) we have a mile wide tornado heading straight for us?  Is God any less good?  Is He any less in control?  Of course not!

There have been times that I’ve sat here waiting on results from the children’s doctors – results that could greatly alter the course of our lives.  I have learned that it’s not about denying reality and pretending like nothing’s wrong.  It’s about facing the hard realities of life head on and choosing to believe that no matter what the outcome, my God will get me through.  And with each new problem that arises, I choose to say, “God, even in this, I will trust You.”  It’s not about believing He will remove every storm.  It’s knowing He’s the One getting me through the storm. 

I hope you will find Him in whatever “storm” you are facing today.

“I have said these things to you, that in me you may have peace.  In the world you will have tribulation.  But take heart; I have overcome the world.” (John 16:33, ESV)

“So we do not lose heart.  Though our outer nature is wasting away, our inner nature is being renewed day by day.  For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal.” (2 Corinthians 4:16)


Sunday, May 1, 2011

The Aftermath - Alabama Tornadoes - Part 2

Tornado Warnings are a common occurrence in Alabama this time of year.  Mostly we have a few small tornadoes that affect just one house or street.  Rarely, an entire community will be affected.  With this storm, they were warning us days ahead of time that it could be bad.

Since Criss couldn’t get his truck out of the yard to get to work (see last post), he was home with us.  All of the food in the refrigerator was about to ruin, so Criss started grilling everything he could.  Thankfully, it was time for me to buy groceries, so there wasn’t too much food in there.  At one point, my mom parked down the road with a bag of ice, and Criss walked through a patch of woods to retrieve it from her.  That enabled us to put a few things on ice in a cooler.

Later in the day, the power company and county clean-up crews drove by and merely pushed the downed tree and pole over to the side of the road for everyone to start driving over the lines.  With that, I knew we were not a top priority and we would be without power for a good while.  The problem was the lines were still draped through a tree and blocking us from leaving our house.

If you live in an area prone to tornadoes, they always tell you to go to the center room on the lowest floor of the house.  Since we live in a one level house, the bathroom in the middle of the house is our designated spot.  Depending on the strength of the tornado, the outside walls will go first.  If anything is left, it’s generally the center.  Early in the day, I cleared everything from the bathroom, leaving only the things that were secured to the house so there wouldn’t be anything to fly around and hit us if our house was in the path of the tornadoes.  I also used a child safety lock to secure my purse and other important documents in the bathroom cabinet with us.

There’s a certain feel in the air when tornadoes are coming.  Some of you know what I’m talking about.  You could just feel it.  Scenes from the movie Twister kept playing through my head all day.

We were listening to the radio and sat bewildered as the large tornadoes hit the city of Tuscaloosa.  (We live in Tuscaloosa County, about 30 minutes east of the city.)  Since the power was out, we couldn’t see what was going on, but from the sound of the weather man’s voice, we knew it was really, really bad.  All he kept saying was “All we can do right now is just try to get through this.”  They had numerous visuals of extremely large tornadoes all over the state.  We sat listening as a tornado they were reporting to be ½ to 1 mile wide ravished the heart of the city of Tuscaloosa – and it was headed our way.

As I listened, my eyes roamed the house.  Was there anything else I needed to put in the bathroom?  What would I miss most if our house were destroyed?  My purse and other important documents were moved to the safest spot for convenience, but nothing else in the house really mattered as long as we made it through alive.

It was soon approaching our area, and we all headed to the bathroom.  We put the kids in the bathtub with their bicycle helmets on, and Criss said a prayer.  The kids both sleep on toddler beds, so their mattresses were small enough to fit in there with us.  If we were hit directly, Criss and I were ready to throw the mattresses over the kids in the bathtub and lay on top of them to try to keep them safe.

At this point, there were so many difficult things that raced through my mind.  It’s one thing when you’re worried about your own life.  It’s something far different when you’re trying to protect your young children.

We soon received the call that we were safe to leave the bathroom.  The tornado had passed just to our north.  We had been spared, but so many others that day were not…

To Be Continued


“God is our refuge and strength, a very present help in trouble.  Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling.”
Psalm 46:1-3