Friday, April 29, 2011

The Aftermath - Alabama Tornadoes - Part 1


It's been a crazy few days around here, but the four of us are safe and our immediate family is all accounted for.  We live between Tuscaloosa and Birmingham, and our area has been greatly affected by the recent storms.

It began early Wednesday morning with the first line of storms that crossed our area before the more devastating storms later in the day.  Criss was up, and I was awake but still in the bed.  It was some time before 6 am.  I've been told the sirens went off, but I never heard them.  All I heard was a loud rushing wind and cracking trees all around us.  There were power surges, and Silas ran to my room upset because the sound machine in his room was surging and making very loud noises.  I didn't have time to do anything.  I just remember thinking that something was about to fall on the house.  Thankfully nothing did.

Our power was out, but it wasn't until later that we realized that we were blocked in and couldn't leave our house.  We live on a corner lot, and a large tree and the top half of the power pole were lying across the main road, with the lines ripped from our house and blocking the side road that leads to our driveway.  There was no way to leave in any of our vehicles, but there was no damage to our house (other than the power lines that have to be reattached).  I am hoping that the power surges did not mess up any of our appliances.

We later learned that there were large trees down all down the road leading to our house.  A few houses had been damaged badly.  Also, our church is less than 10 minutes from our house.  The steeple was blown off, puncturing the roof above the nursery hallway.  It hit a water line and flooded the nursery hallway and part of the Sanctuary.  And this all happened just in the first line of storms.

That is part of the problem.  By the time the main line of storms hit, many in our area had already been without power all day, and it was difficult to know what was going on.  We had several radios but couldn't get any of them to work (of course).  Luckily, Criss had a radio attachment for his iPod.  We took turns all day with our iPods.  We would listen to one until it ran out and swap to the second while the other was charging outside in the van.

We also had a family friend (who did have power) watching the TV for us, ready to call and tell us when to head for safety.  Autumn's school was canceled for the day because there was no power.  Silas' preschool was open, but we were stuck in our house.  Nearly everyone was at least closing early for the day.

Since we were home with the power out all day, I kept the kids busy picking up.  It drives me crazy to be without power, falling over toys in the dark, and unable to find the things I need.  If I had to be in the dark, I at least wanted to spare my toes. J

I knew our area had been hit pretty hard when we couldn't even get anyone to move a downed power line from the middle of the road.  There was just so much damage already.  And the worst of the storm was still on its way...

To Be Continued

Janel

Tuesday, April 26, 2011

When the Words Won't Come

Autumn’s a little “off” right now.  Can’t say for sure what caused it.  Could be the medicine we gave her for her cough.  Could just be the natural ebb and flow of things.

Night before last, she was crying in her sleep again.  Yesterday, she wasn’t walking as well as usual.  This morning, she was having a hard time communicating.

It’s made me reflect on just how far we’ve come over the years and be thankful.

She’s always had difficulty expressing wants and needs – especially if she’s upset.  But, after five years of working on this, we’ve finally had a breakthrough this past year.  This morning, though, she was having a hard time finding her words.

It began with her crying because she was ready for breakfast (although she’d never once asked for something to eat) and progressed to her hiding on the porch in the fetal position.  Once her egg was ready I got her back inside the house, and she cried because she wanted a waffle.  (Not that she every actually said this.  I just figured it out.  I’ve become very good at mind reading.)  While eating her waffle, I started brushing her hair.  That was a mistake.  With her sensory processing problems, touch has always been a big trigger for her.  Some days I can brush her hair with no major problems, most days she at least whines.  Many days, she fights and protests loudly.  Today, instead of screaming, she sat at the table, crying huge crocodile tears.  I knew she was having a rough morning, so I gave her a minute to herself and then pulled her into my lap and rocked her a minute to help her settle back down.  It has to be frustrating for her to be communicating well for a while and then have a day where she just can’t get her thoughts to form into words.

It reminded me of Romans 8:26, “The Spirit helps us in our weakness.  For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groaning too deep for words.”

There are times when I go to pray that I just don’t know what to say.  It may be that I’ve asked for the same things so many times that I just can’t find a new way to express it.  Or maybe it’s a situation in which I don’t know what I should even be praying for.  Regardless of the situation, it is comforting to know that just like we’re here to help Autumn when she can’t express what she needs, God’s Spirit is here to intercede for me when my words have run dry.

…And He’s a much better mind reader than I’ll ever be.

Janel

Quote of the Day

“Any idiot can handle a crisis;
it’s the day-to-day living that wears you out.”

~Anton Chekhov

Ran across this yesterday, and just had to share it.  So true...

Autumn’s EEG & EKG are scheduled for May 17.

Janel

Friday, April 22, 2011

I Think I'll Move to Canada

I go through phases of doing lots of research concerning the children’s health issues.  Lately, I’ve found a few Yahoo Groups that have been very helpful.  The frustrating thing is when I find things that could possibly help the kids, but they’re not available in the US.  For example, there’s a medicine called Ketotifen.  It was formerly used as an asthma medication.  It wasn’t very good at helping asthma, but it’s been found to be very helpful in allergic-type disorders of the digestive system – including mastocytosis and eosinophilic disorders.  The problem?  You can’t get it here.  It’s available in Canada, and I believe you don’t even have to have a prescription – it’s supposed to be over-the-counter.

Today, I was reading information from a group for those with cerebral folate deficiencies.  I read about a child who had problems with Leucovorin (like Autumn did).  They swapped to Isovorin, and the child is doing great on it.  Can you get it here?  Of course not.

Thus, my thoughts on moving to Canada.

But then…

I remember my roommate from college who was from Canada.  I recall her describing the many layers she had to put on each day just to leave the house.  (I can’t stand wearing a coat – much less three layers of clothing with a coat on top of it all.)  I think of the freezing cold temperatures and the many feet of snow.

Maybe I’ll move to Australia instead.  J

Janel

Thursday, April 21, 2011

Vasovagal?

Vasovagal syncope (vay-zo-VAY-gul SING-cuh-pee) is the most common cause of fainting. Vasovagal syncope occurs when your body overreacts to triggers, such as the sight of blood or extreme emotional distress. The trigger results in vasovagal syncope — a brief loss of consciousness caused by a sudden drop in your heart rate and blood pressure, which reduces blood flow to your brain.
(Taken from www.mayoclinic.com.)

When Autumn had her follow-up appointment with the doctor in Atlanta, the Nurse Practitioner we saw that day suggested that Autumn see an immunologist to make sure there wasn’t something we were missing.  She said that Autumn seems to be making antibodies to many different substances.  You may remember that when they did Autumn’s labs, her eyes rolled back for a moment, and she threw up on everybody.  They said it was a vasovagal response.  Autumn ended up having the flu that same week.  When they were putting in her IV at the hospital, her eyes rolled back into her head a few times.  It was hard to say whether or not she actually lost consciousness because she was already pretty lethargic and was lying limp in my arms.

Yesterday was Autumn’s appointment with the immunologist (Dr. I – same one Silas sees).  At the end of the visit, they did labs.  They took several viles of blood before sending us back to the immunology office.  Autumn seemed fine and walked back to our room.  Dr. I also wanted to give her the pneumococcal vaccine.  (He was doing this so he could track how Autumn’s body handled the vaccine.)  After the shot, I helped Autumn to the floor, and I sat down to gather all of our things from the bench before leaving.  Everyone else had left the room by this point.

Autumn was standing beside me, and then suddenly, she passed out on the floor.  I was concerned because I heard something hit the floor very hard.  Due to her gross motor problems, Autumn is used to falling a lot, and it is rare for her to get hurt because she has the whole falling thing down to a science.  This time though, she went straight back and whacked her head on the floor!  When I first looked at her, I could see that her eyes were rolled back, and I knew she’d fainted.  However, when I went to pick her up and make sure she was okay, her whole body was very rigid, and I knew something wasn’t right.  She then began to move her arms like she was having a seizure.

I shouted for help, but no one heard me.  I ran to the hallway, but it still took a minute before anyone heard me.  The doctor was in the room next to us and was the first to make it to the room.  By the time everyone else got to the room, the convulsions were over, and Autumn was lying limp on the floor.  While Dr. I was looking her over, she started gagging, but nothing came up.  They brought her a cup of water.  It was then (as I tried to hold it for her) that I realized how badly my hands were shaking.  They had us stay in the office about 45 minutes to make sure she was alright.  We left with instructions to get her to the hospital if she developed bad headaches or started throwing up.

Here’s the question…  Was the seizure-like episode a result of the vasovagal response or the blow to the head?  Neither prospect really makes me happy.  If it was a result of the head injury, that can't be good.  If it was a result of the labs, is she going to start having these seizure-type spells every time they draw blood or give her shot?

I’m trying to leave a message with her neurologist to let her know what happened.  Autumn looks good for now, so we are praying that there are no further complications from the fall.

We are still waiting to hear the results from the labs they did in Atlanta.  We are also waiting to hear about the slides they were re-reading for Silas.  I called the GI to check, but no one’s called me back yet.  I’ll post when/if we find out anything.

Janel

UPDATE:  Before getting this posted, I heard back from Autumn’s Neuro.  She is going to schedule an EKG/EEG.

Tuesday, April 12, 2011

Lessons Learned from a Closet

Who would have thought that the things lurking in my closets could give great insights into my soul?  But they certainly did.  In my last post, I shared my recent efforts to get organized.  Just organizing things, though, is rarely all that needs to be done.  The most difficult part of the process can be deciding what things to keep and which things it’s time to let go.

I think the real problem is the dreams that many of those unused things represent.

Before Criss and I had kids, we thought we wanted to have four of them.  Now that we have two kids with chronic health problems, even two seems like too many at times.  As I start packing up old baby items from the closets and attic to be given away, it seems to not just be the items that I’m putting into the box but instead the dreams of many happy, healthy children running around the house.  It’s also letting go of the hopes of a fun pregnancy (I was sick the entire time I carried Silas) as well as the hopes of a “happy baby” – one that doesn’t scream in agonizing pain for the first three or four years of his life - one of those quiet babies that you can take anywhere and he just sleeps through the whole thing.

One closet held a small radio intended to be used in bad weather.  It didn’t hold much value to anyone but me.  It was given to me by my grandmother – my “Wichita Granny” who I fondly remember playing with as a child – my Granny who I will never see again on this earth.

My bedroom closet is home to many different sizes of clothing.  When we lose weight, it’s relatively easy to give away the larger sizes – vowing we will never return to that place again.  Yet, it is much more difficult to get rid of the smaller sizes.  When we do, we feel that we’re somehow letting go of the dream of ever returning to that size again.

Another closet held the supplies we had left from Silas’ 2 ½ week stay in the hospital that sent us home with no real answers and an NG tube.  Just looking at the spare NG tube brings back vivid memories of the three adults it took to hold him down while a nurse shoved the tube down his nose and into his stomach.

And there’s more to come.  I haven’t gotten to all of the kitchen cabinets yet.  That will lead me to spaces overflowing with cookbooks filled with recipes I had dreamed of making for my family – the dream family that is able to eat anything I cook (and not end up sick for days afterward).

The problem is that when I hang on to these items, there’s very little space left for the items I actually do need.  In the same way, refusing to let go of the dreams they represent prevents me from enjoying the life I am actually living.

I may never have a “happy baby” or four healthy kids, but I do have a little boy who has such a big heart for others.  I also have the opportunity (through adoption) to change the life a little girl who otherwise may have never received proper medical care or the embrace of a loving family.

I also know that when I pack away the little radio, I am not losing the wonderful memories I have of my grandmother playing hopscotch with me in the driveway.

As I pack away smaller sizes of clothing, I am not giving up my dream of being that size again – only accepting who I am today and choosing to give the clothes to someone who can actually use them before they go out of style or are eaten by moths.

I throw away the old medical supplies choosing to not dwell on past hurts and pain – choosing instead to focus on how far we’ve come.

In packing up these items, I am putting into action my heart’s desire to follow God wherever He leads.  He may chose to one day give those dreams back to me or instead give me new dreams.  Either way, I (and my closets) choose to embrace the life He has given me today.

“Remember not the former things, nor consider the things of old.  Behold, I am doing a new thing; now it springs forth, do you not perceive it?  I will make a way in the wilderness and rivers in the desert.”  Isaiah 43:18-19 (ESV)

“And he said to all, ‘If anyone would come after me, let him deny himself and take up his cross daily and follow me.  For whoever would save his life will lose it, but whoever loses his life for my sake will save it.  For what does it profit a man if he gains the whole world and loses or forfeits himself?’”  Luke 9:23-25

“Do not lay up for yourselves treasures on earth, where moth and rust destroy and where thieves break in and steal, but lay up for yourselves treasure in heaven, where neither moth nor rust destroys and where thieves do not break in and steal.  For where your treasure is, there your heart will be also.”  Matthew 6:19-21

Janel

Monday, April 11, 2011

A Place For Everything...

…And Everything In Its Place.

I’ve always considered myself to be pretty organized.  I know some people get an adrenaline rush from running, etc.  I get a rush from organizing things.  I jump at any excuse to make a chart in Excel.  And, I have a friend who loves to tell people how I would (as a child) organize her closet for her every time I came to her house.

On the other hand, I can’t stand cleaning.  Dusting is on the list of the things I dislike most in life.  It may in part be due to the fact that I don’t like cleaning around clutter.  I have to pick everything up first and then clean.  By the time I’m done putting everything away, I’m exhausted already – especially now that we have children.  I’m not sure why I didn’t inherit my mother’s cleaning gene.  She absolutely loves to vacuum.  (Hi mom!  I’m sure you’ll be reading this.)

I used to be a “binge” organizer.  When I was teaching elementary school, I would take the first few weeks of summer break and go through all of the cabinets, closets, files, etc. in the house and get everything back in its place.  I would also use Christmas break to work on some small projects in need of help.  Something about having everything organized around me makes me feel more organized on the inside as well.  The opposite can also happen.  When things are unorganized all around me, I feel all frazzled and out of sorts on the inside.

Since having kids, my entire system of keeping the house organized had fallen apart.  So much time was spent on their health issues that cleaning out closets was no where near the top of the list of things I needed to focus on.  However, things have been a bit more settled lately, and I’m trying to use the time to develop a new system.  The days of having two full weeks free to declutter the house are long gone, so I’m developing a plan for working on one closet/drawer/cabinet/etc. per week – more as I have time.

In the midst of this process, I read a book by Marcia Ramsland entitled Simplify Your Life.  It was just the motivation I needed to help me develop a plan for this new season in life.  I have gotten SO many things done the past few months.  It will still take some time to make it through all the nooks and crannies, but I finally feel like I will get to it all – and before the kids leave for college.

Another good resource for getting organized is FlyLady.  While I don’t follow all of her plan, she has a lot of good thoughts and resources.  Some of my favorite FlyLady quotes:

“You can’t organize clutter.  You can only get rid of it.”
“Only keep things that make you SMILE!”

I’ve had a little extra motivation the past couple weeks since the Children’s Ministry at our church is having a yard sale to raise money for this summer’s Kids’ Camp.  I’ve already taken four different loads of things to donate.  I cleaned out the hall closets over the weekend, and I cleared out enough stuff that an entire shelf is empty at the moment.  Oh the joy!  Still trying to decide what will become of the newly found space.

“For everything there is a season, and a time for every matter under heaven: …  a time to keep, and a time to cast away.”  Ecclesiastes 3:1, 6

Hope you will take time this week to do something you enjoy.

Janel