Friday, December 28, 2012

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.)


video

video

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.

Thursday, December 27, 2012

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:


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


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

Wednesday, December 26, 2012

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

Monday, November 5, 2012

...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

Wednesday, October 3, 2012

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

Tuesday, October 2, 2012

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


Tuesday, September 25, 2012

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

Friday, August 31, 2012

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

Monday, August 27, 2012

G-Tube Surgery

What a busy two weeks it has been!  Silas had his G-Tube surgery on Monday, August 13, and it's been crazy ever since.

When the GI doctor originally wanted to do the surgery in September, I had commented that I hated for Silas to miss a lot of school once the new school year had started.  The GI doctor said, "He'll only be in the hospital one night" - leading me to believe that recovery wouldn't take all that long.  That was far from true.


Even before Silas left recovery, they had trouble managing his pain.  The morphine they gave him didn't do the job, and they had to give him additional meds.  Once he was out of recovery, the doctor only wanted him to have Tylenol, which did very little for the great amount of pain he was in.


During his time in the hospital, they gave him a few, small bolus feeds.  He wasn't even back on continuous feeds (or walking more than a couple feet) before we were kicked out of the hospital.  Silas reacts to so many things that I'm sure it was for the best.  However, when he was discharged, I couldn't believe they were sending him home already.  He was in no condition to leave.  Just riding in the wheelchair was almost unbearable.

The good thing about leaving was that I was in control of everything that went into him again - and we could get rid of the IV.  The sooner we stopped putting new things into him, the sooner his reactions would end.  Thankfully he hasn't gotten to the point of those crazy screaming spells he gets when he's reacting to things.  But his colon's messed up again, he ran a fever for a week and a half, his skin is all dry & itchy, he's having random pains, and he just hasn't felt well - not to mention the "standard" pain from the surgery.


How do you convince a six year to walk when he's in terrible pain?  (The doctor wanted him walking as soon as possible to work out the stiffness and pain.)  $$$  That's right...bribery.  He probably has more money than I do right now.  We started offering him quarters (and sometimes nickels, dimes, or dollars) for walking.  We were trying to get him to walk from his room to the living room (or vice versa), so we would leave them along the path.  Once he made it to a coin, it was his to keep.  And at one point, his grandmother was matching whatever we gave him.  What a deal!

He did make it to school some last week, and today's his first (hopefully) full day.  My next post will have some of our "First Week of School Pictures."

Janel

"Weeping may tarry for the night, but joy comes with the morning."  Psalm 30:5b