Autumn ~ Spring 2013

Here are some of the things that have been going on with Autumn lately...

She's in second grade this year and is reading well.  She loves school, and I enjoy seeing her gradually becoming more social each year.  Organization is not her strongsuit.  She often reminds me of Pigpen (from the Peanuts cartoon)  - with a cloud of dust around her everywhere she goes.  But, she's creative, and I enjoy reading the stories and songs she sometimes writes.  She also loves music, and the ipod she got for Christmas might as well be her third arm.

Last August, we had a follow-up with her doctor in Atlanta that has been trying to decide if the problems with Autumn's mitochondria are primary or secondary.  Some new tests were due to come out within a few weeks of our visit.  The testing is finally complete, and we're scheduled to return to June to hear the results and see if they were able to find any new information.

The day after we returned from our trip to Atlanta, Autumn had surgery to have her ear tubes removed.  They were taking a long time to heal, but they were finally closed back up at our last visit, and we were able to avoid another surgery.  Yeah!!!

Much of this school year has been focused on trying to find her an ADHD medication that worked without causing any unbearable side effects.  FIVE medications later - we still haven't found anything.  Here a few of the issues we're having.  First, when she first moved in with us, she had some pretty severe anxiety issues.  So far, any of the stimulants we've tried have brought back her anxiety (along with many other problems) and there was no way we could continue those.  Second, Autumn cannot swallow pills.  Anything we try must come in a small tablet (that I can put inside a raisin) or we can't get it in her.  Third, some of the non-stimulants completely knocked her out.  She was barely awake all the time.  Fourth, one of the medications made her heart rate/blood pressure drop, and we had to discontinue.  Finally, all of the ADHD medications interfere with her eating and weight gain.  At the advice of the GI doctor, we have had to quit trying new meds in order to try to get her weight back up.

Her weight issues are pretty bad right now - bad enough that the GI doctor has mentioned a feeding tube a couple times - to get extra calories in her overnight.  I just can't end up with two kids on a feeding tube!  How crazy is that - when they are not even biologically related?  I knew Silas needed one, but I'm not convinced it's the best thing for Autumn.  For now, we will try to increase the amount of fat and calories in her diet.  We'll see the GI again this summer to see if it's helped.

Without the ADHD medications, she barely hangs onto the growth chart.  With the meds, she falls completely off the chart.  And so, our medication trials are on hold for now.  She's very fidgety and has to be told at least 10-15 times to find her shoes and brush her teeth every morning, but she's managing to make it through second grade.  Overall, it could be worse.

After stopping the meds, we had problems getting rid of the all of the irritability.  I'm in the process of going through anything new we've started this year to find the culprit.  Hopefully, I will have that figured out soon.

Her walking has not been as good lately either.  I'm hoping that whatever is causing her irritability is also affecting her walking.  They have said that her muscle problems could become degenerative, and I'm hoping that's not what's happening.  I've come across several things lately that talk about how some kids allergic-like reactions can result in inflammation in the brain.  Very interesting stuff.

I'll update on Silas next time...

Janel

Where We've Been

So much to say, so little time to write these days...

Life just gets busier and busier.  I think all the time about writing, but other things get in the way.  

I've been teaching college classes on and off for nearly seven years now.  I was teaching one course (as well as a couple independent studies) in the fall, and they had hoped to have me teach several more this spring.  However, there weren't enough students that needed the classes this time around, and that left me desperately needing another source of income.

We've been mostly living on one income since I was pregnant with Silas - along with the occasional money from the college classes.  We were making it somehow, even with the large number of medical expenses we have.  However, with the addition of the feeding tube last summer, I had to find a more steady income source.

But, God provided.  A job opened up at the kids' school - and it was the one position that I absolutely LOVE - intervention.  I spend half the day as a Tier III teacher, giving extra help to students who are struggling.  I am working with kids in 1st - 5th grades.  I enjoy the pace and variety.  The second half of the day, I work just with second graders.  Their classes are very full, but it was too late in the year to split the classes.  So, I pull out small groups during the afternoons.  Autumn loves the fact that my classroom is on her hallway, so she sees me several times during the day.  Silas gives me big hugs when I see him in the lunchroom, and grins when we run into each other in the hallway.

Beyond the additional income, it has provided us with supplemental insurance that has been covering all of our deductables, copays, coinsurance, prescription copays, etc.  For most people this isn't much.  For us, it's saving us hundreds and hundreds of dollars every month.  Yeah!!!

And thus...the reason there's so little time to write.  But, I will try to do better.

Another reason is related to our camera.  The camera we'd been using was on it's last leg, so we bought a new one with some of our Christmas money.  Our computer is also on it's last leg, an we're afraid that downloading a new program for the camera as well as all the new pictures will be more than our poor computer can handle.  Hopefully we'll have a new one soon.  Since I've been working full time, we're going down the list of everything that's been broken and slowly fixing or replacing everything.  Other things (like the oven) were just higher on the list.

Until then, I'll will try to send a few more (pictureless) updates.

Happy Belated Easter!  He is Risen...He is Risen Indeed!

Janel

The Leaf Pile

The kids love it every year when Criss rakes up a few leaves and makes a huge leaf pile for them to play in.

I'm going to try to post short video clips of the experience below...  (They're just a few second each - taken from our camera.)

As you can see, they had a blast!

Janel

This is the first time I've tried to add video, so hopefully it works.  For those receiving this by email, you may have to go directly to the blog if it doesn't work in the email.

Tubie Tidbits

For those of you who are interested in a little more information about feeding tubes, I thought I would share a few things that I've found to be very helpful.

Once Silas' feeding tube surgery was scheduled, we stumbled across Tubie Friends.  They sew feeding tube buttons into Build-A-Bear stuffed animals and make them available for kids with feeding tubes.

We contacted them before Silas' surgery, and they rushed our order so he could get it as soon as possible.  It arrived the day of his surgery.

It was nice for him to have a stuffed animal with a "button" like his that he could play with and get used to.  (He liked learning how the different tubes and extensions hook and unhook.)  We named ours Fudge.  We took Fudge to school, and the school counselor used him to tell the other kids in Silas' class about his feeding tube.

You'll notice that Fudge has a piece of cloth around his button.  We eventually bought Silas something like this from Button Buddies.  Feeding tubes can "leak" throughout the day.  Some people prefer to leave it open to the air.  We tried this, but the leakage was irritating Silas' skin. It was also making his granulation tissue worse.  (Granulation tissue is a red, fleshy tissue that often develops around feeding tube incisions.)  At first, we tried using gauze, but the strings would often stick to him and become very difficult (and painful) to get off.  The Button Buddies have been wonderful!

Another great resource that I found was the Feeding Tube Awareness Foundation.  (That's their logo at the beginning of the post.)  Here are a few of their pages that you might find helpful:

About Feeding Tubes 

Different Types of Feeding Tubes - Silas had a NG tube over the summer and then transitioned to a G-tube button.

For Friends and Family

Products - I just love their logo.  I'm planning to buy something from their store soon.

Note:  You can click on any of the highlighted words above to follow the links.

Janel

Fall Festival ~ 2012

Haven't had time to post in a while.  I'll try to catch up over Christmas break.

For Halloween, we attend the Fall Festival at our church each year.  This year, Autumn decided to dress as Rapunzel from Tangled (in her wedding dress).  Since she already has short, brown hair, it fit perfectly with Rapunzel's post-haircut look.

Silas went as Buzz Lightyear.  To infinity and beyond...

Halloween (and every other holiday) is tricky for those with food allergies or intolerances.  I'll share what I do in case it helps anyone else out there.

Our church has a Trunk-or-Treat at their Fall Festival.  Each year, I contact the Children's Pastor to see about how many cars will be there.  Then, I assemble sandwich-size Ziploc baggies with non-food prizes for each car.  (I usually have enough for my kids plus a few extras.)  I tape a note to the bag that explains that the items can be used for anyone that has food allergies or other medical issues that prevent them from having candy.  

While the kids play in another area (with Criss and all of the grandparents), I go around and give the bags to all of the cars.  Most of  them know what I'm doing by now, and I can just hand them the bag.  For any newcomers, I stop for a moment and explain to them what I'm doing.  It's a lot of work for me, but it allows the kids to participate - and get things they can actually enjoy.

Janel

...BUT GOD...

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."  Psalm 73:26

My flesh and my heart may fail, BUT GOD...

My flesh and my heart may fail, BUT GOD...is my rock, my fortress, and my deliverer.  (2 Samuel 22:2)

My flesh and my heart may fail, BUT GOD...restores my soul.  (Psalm 23:3)

My flesh and my heart may fail, BUT GOD...is the same yesterday, today, and forever.  (Hebrews 13:8)

My flesh and my heart may fail, BUT GOD...renews my strength.  He gives me wings like the eagles'.  He makes me walk and not faint.  (Isaiah 40:  28-31)

My flesh and my heart may fail, BUT GOD...gives me songs in the night.  (Psalm 42:8, 77:6)

My flesh and my heart may fail, BUT GOD...is a mighty one who will save.  (Zeph. 3:17)

My flesh and my heart may fail, BUT GOD...will quiet me with His love.  (Zeph. 3:17)

My flesh and my heart may fail, BUT GOD...is interceding for me.  (Romans 8:26, 27, 34)

My flesh and my heart may fail, BUT GOD...will never leave me or forsake me.  (Hebrews 13:5)

My flesh and my heart may fail, BUT GOD...came so I could have life, and have it more abundantly.  (John 10:10)

My flesh and my heart may fail, BUT GOD...is my salvation.  (Ps. 62:7, Isaiah 12:2)

My flesh and my heart may fail, BUT GOD...

"Behold, God is my salvation; I will trust, and will not be afraid; for the Lord God is my strength and my song, and he has become my salvation."  Isaiah 12:2

Janel

Wild Animal Safari

After packing up our campsite Sunday morning, we headed further south to Wild Animal Safari Park in Pine Mountain, GA.

We were thrilled to learn that our Passport included a free van rental.  (You have the option to ride in their bus with a tour guide, take your own vehicle, or rent one of their vehicles.)

It was raining on and off, but it worked out to our advantage.  Fewer visitors to the park meant the animals were still hungry when we got there.  Many of the animals would come running to the vehicle when they saw us approaching.  It was rather humorous.

The front windows roll up and down like normal.  The back windows have been taken out and replaced with a few bars so that those riding in the back can reach their hands out to pet and feed the animals.  Problem was that the control for my window wasn't working on my side; Criss had to control it from his side.  I would be turned around taking pictures of the kids, realize something was breathing down my neck, and turn to see this coming through my window...

Or this...

Criss, of course, thought this was very funny.

It took Autumn a little while to get used to the animals coming at us.  She started out running to the back of the vehicle.  Eventually, she would stretch her hand, just barely reaching the window.

Slowly, she started warming up to them.  Still a little scared - but smiling at the same time.

In the end, she embraced the experience.

Silas, on the other hand, was thrilled from the start.  I wish I had video of him giggling as the animals "attacked" our van.

Criss thoroughly enjoyed himself as well.

For me, the highlight was getting to pet and feed the giraffes - two of them actually.

Such fun!!!  We ended with the Walk-About - a small zoo-like area.  No pictures, my battery ran out...

"For you shall go out in joy and be led forth in peace; the mountains and the hills before you shall break forth into singing, and all the trees of the field shall clap their hands."  Isaiah 55:12

Janel

Camping at Stone Mountain

Our Give Kids the World Passport expires this month, so we're trying to squeeze in a few more trips before it's gone.  We wanted to stay the night, so we could visit one attraction on Saturday and another on Sunday.  We didn't have much money to spend on lodging, so we decided to CAMP!  Yes, this was REAL camping - in a tent.

After our 3-4 hour trip to Stone Mountain Park (just east of Atlanta, GA), we checked in and set up camp for the night.

From there, we headed over to the Crossroads Area where the paid attractions are located.  They had provided us with free parking going into the park, and we each received wristbands that got us into almost all of the paid attractions.

The kids had a blast at the Camp Highland Outpost - a low ropes course with a zip line.

We had a great time riding the Summit Skyride to the top of Stone Mountain.

It was gorgeous up there.  Wish we'd had more time to just sit and take in the view.

Their Pumpkin Festival was underway, so the kids had fun "dressing" pumpkins and making fall crafts.

Other things we enjoyed:  Geyser Towers, The Great Barn, and the Scenic Railroad.

Our day of fun ended with the Lasershow Spectacular - a laser light show with a few fireworks.

So, how did we make it camping with two kids with multiple food allergies & intolerances - one of whom is on a feeding tube - and all with no electricity or frig?

We packed lots of millet bread, rice cakes, rice cereal, etc.  Then, we figured out how we could charge Silas' feeding pump overnight.  We have a battery charger (for a car).  It has a cigarette-type outlet on it.  We plugged in an adapter that converts from the cigarette outlet to a regular outlet.  Then, we could plug the charger for the feeding pump into that.  It worked even better then we'd hoped!

car charger to left, followed by adapter, then charger, then pump...

The next morning, the kids played by the lake and fed the ducks while Criss an I tried to pack everything back up.

We had a great spot.  See Stone Mountain in the background?

I learned a lot of neat information about the monadnock (yes, it's not technically a mountain) while visiting the park.  It's a five mile walk around the base, and there's one trail you can take to the top that's about 1 mile long.  It's nearly 600 acres in size.  The carving itself covers 3 acres (larger than 2 football fields) - with Robert E. Lee being 9 stories high.  Wow!  Even when you're standing there looking at it, it's hard to fathom how massive it is.

Beyond this, there is much more underground.  One of the tour guides mentioned that what we see is just 10% of what's there.  90% of it is underground!

It made me think of the greatness of God.  How the little we can see can be so difficult for us to comprehend at times, and there's SO much more that we can't even "see" yet.  So much more to know.

"For now we see in a mirror dimly, but then face to face.  Now I know in part; then I shall know fully, even as I have been fully known."  I Corinthians 13:12

To Our Great God...

Janel

More Surgeries

Silas has been recovering VERY slowly since his G-tube surgery.  It was about 3 weeks before he really started playing again, and it's still sore to the touch.  He's been at school, and the year's off to a good start.

from a few months back...

On Tuesday, September 11, my mom had surgery to remove a mass from her abdomen.  They originally found the cancer four years ago.  It had started in her appendix and spread throughout her abdomen.  She had surgery to remove it as well as chemo.  The doctors said she would need to do this again every 3-4 years or so.  This spring, the cancer had regrown to the point that they needed to operate again.  She went through another round of chemo before having surgery.  In August, she found out that is was growing again.  They went back in to remove the largest of the growths.  There are others that they were unable to remove.  Please pray for her as she recovers from the surgery.

Last week was Mitochondrial Disease Awareness Week.  Ironically, Autumn had an appointment with her Mito doctor in Atlanta.  They have never known whether Autumn's mitochondrial problems are primary or secondary.  Some new tests are coming out in the next few weeks that could possible help us find out some of the answers we've been looking for.  Keep your fingers crossed.

The day after our trip to Atlanta, Autumn had the surgery to remove her ear tubes.  That went very smoothly, and it hasn't set her back a bit.

Janel

The First Week of School

Our school's Open House was the Thursday before school started - just three days after Silas' surgery.  He was in no mood to travel, but we thought it would do him some good to see a few friends.  He's such a people person.  So, we borrowed a wheelchair and rolled him in.  We were right.  He smiled as we ran into several familiar faces.  But even though he was in the wheelchair, just riding around for an hour completely wore him out.  We met the new teachers, left all the new school supplies, and headed home.  Looks like it's going to be a good year.

On Friday, I had a meeting with the 504 Team in order to have Silas' 504 Plan in place before school started.  It went really well, and I was relieved that they were so understanding.

Silas was no where near ready to go on Monday, so I didn't even try to wake him up.  So, I was able to spend the first day with Autumn.  Here she is before we left the house.

And here she is in her new classroom.

The structure at school is good for her, and she loves being there.  Sometimes when Criss takes her to school, he'll joke with her and try to get her to run away to the beach with him for the day - and she always refuses!  She likes school that much.  (Me on the other hand, I would go to the beach in a heartbeat.)

Tuesday morning, we got Autumn to school on time while Silas was sleeping in.  As soon as he woke up, he stated adamantly, "I want to go to school."  He had yet to walk more than a few yards, but if he wanted to go, I'd help him get there.

He was still irritable, and would not let me take his picture, so I snuck these of him from behind as we were leaving the house.

We wouldn't have won any races, but we VERY, VERY slowly made it down the long hallway to his classroom.  I wasn't sure how long he'd make it.  The goal was for him at least get to meet his new classmates.  First, the counselor came in and talked to the class about Silas' tube - giving everyone time to ask questions.  Then, they were going to read a book and make a craft - so he decided to stay for a bit.  (Craft time is his new favorite thing.)  He was still in such bad shape that I sat in a room down the hallway - just in case.

He stayed a few hours before he needed to leave.  He even let me get a picture (the front view this time) before we left his classroom.

Wednesday and Thursday were about the same - he went for 2-3 hours each day.  And on Friday, he made it almost the whole day.

So much for having the surgery done before school started so that he wouldn't miss any school...  At least school was motivating him to move.  When we got home on Tuesday he said, "Don't forget you owe me quarters for all that walking."  J

Janel