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


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."


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

Thursday, August 9, 2012

There's No Place Like...

…the doctor’s office waiting room. J  Just when I think we’re nearing the end, another appointment creeps up on us.

For example, Autumn had to follow up with her neurologist this summer.  The neurologist wanted us to have Autumn’s hearing checked again (along with a number of other things).  The subsequent visit to the audiologist led to today’s visit with the ENT.  Today’s ENT visit now has us scheduled for surgery in September. It reminds me of the book, If You Give A Mouse A Cookie.

Autumn’s had ear tubes put in twice.  The second set of tubes has been in 3 ½ years now, and they are long overdue to be removed.  You see, they are supposed to eventually fall out on their own, but there are a select few (like Autumn) who have to have them surgically removed because the tubes decide not to come out on their own.  It’s not that I’m worried about the surgery.  (If I’m counting correctly, this will be the 9th time she’s been put to sleep for a procedure.)  It’s just that I would like to be one of those “normal” people who doesn’t know all of the nurses in One Day Surgery on a first name basis. J

Here’s a review of all the places we’ve been just since May…

·         May 1.  Silas saw GI doctor.  Tried Entocort.  Think about NG tube.
·         May 3.  Autumn had to see Orthopedist.
·         May 10.  Autumn & Silas supposed to go to the dentist on the same day.  Autumn had a fever, so I had to reschedule her appointment.
·         May 21.  Autumn goes to Dentist.  Find out she has two cavities.  (Maybe because she likes to eat the toothpaste and not actually brush her teeth?  Just guessing.J)  Of course, they’re on two different sides of her mouth, so they can’t be done at the same time.
·         June 5.  Autumn goes back to Dentist for cavity #1.
·         June 18-19.  Silas sees GI doctor that morning then is admitted to hospital to get NG tube.  We stay overnight at hospital.
·         June 21.  Autumn goes to Dentist (yet again) for cavity #2.
·         June 27.  Autumn sees her Neurologist.  Had to go to Children’s for lab work afterward.  Doctor had us schedule follow-up appointments for the heart doctor, audiologist, and doctor in Atlanta who did Autumn’s testing for mito.
·         June 28.  Autumn follows up with GI doctor.
·         July 3.  Autumn sees Pediatrician about ADHD medication.  (The ones we tried last year made her CRAZY!  Have to find something different for the new school year.)
·         July 9. 
o   Autumn sees Audiologist in AM.  She finds some abnormalities.  Have to see ENT.
o   Have Silas’ arm x-rayed at doc-in-the-box.  Buckle fracture.  They don’t have anything waterproof or removable.  Have to see Orthopedist.
·         July 11.  Silas sees Orthopedist and gets brace for arm.
·         July 12.  Silas sees GI doctor.  Gained 5 pounds with NG tube.
·         July 23.  Autumn sees cardiologist.  Everything still looks good.
·         July 24.  Appointment about Autumn’s ADHD medication.
·         August 9 (today).  Autumn sees ENT.  Has to have surgery to remove ear tubes.

In case you lost count, that was 18 appointments.  And still to come…

·         In August
o   Silas’ G-tube surgery.  Will stay overnight in hospital.
o   Meetings with Silas’ school about starting school with a feeding tube.
o   Autumn has follow-up apt. about new ADHD medication.
·         In September
o   Autumn sees Mito doctor in Atlanta.
o   Autumn’s surgery to remove old ear tubes.

Makes me tired all over again just thinking about it.   But one day...

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning nor crying nor pain anymore, for the former things have passed away,”  Revelation 21:4.  (In other words, no more doctor’s office waiting rooms.  Yeah!!!)


Monday, August 6, 2012

Follow By Email

I've added a "Follow By Email" link for those who are interested in receiving an email when I've updated the blog.  If any of you were using the old "Subscribe To" link, I'll likely delete it soon.  Let me know if you have any problems or if you prefer that I not delete the other link.


Friday, August 3, 2012

Tube Time

The last time I wrote about Silas, the doctor had just scheduled him for an NG tube.  We had talked with him a lot about what was going to happen – and thank goodness, he didn’t remember his first NG tube experience (when he was 2).   To give him something fun to think about, I promised him a trip to the hospital’s gift shop after it was over.

We were admitted to the hospital, and all-to-soon the nurse came to take him for the tube placement.  It’s done in a center room on the same hallway as his room.  The room’s not very big, and they asked that only one of us go with him.  I (very quickly) voted that Criss go.

Although Silas returned to the room with a look of pure shock still on his face (trying to take in all that had just happened), they praised him for doing such a good job.  After he had a moment to gather his thoughts, he said, “I want to go to the gift shop,” and off we went.  His eyes landed on a large, plush, Spider Man ball, and his mind was made up.

Here is Silas leaving the hospital with his new supplies the next day.

Three weeks after the tube was placed, we had another appointment with the GI doctor.  In just three weeks, Silas had gained 5 pounds and grown 1/3 of an inch!  The doctor was very pleased, and I was happy with how much healthier he looked with a little more meat on him (not that he was horribly underweight, but he had not gained any weight in nearly a year).

Our local Children’s Hospital has been in the middle of computer system changes as well as constructing a new building.  The GI doctor wanted us to see him again in two months (Sept.) and talk about G-tube surgery at that time – after the hospital had finished moving into the new building.

Our initial feelings were relief at having a little more time to process all of this.  But, as the days dragged on, Silas would comment on how uncomfortable the NG tube was and how he was growing tired of having something taped to his face all the time.  He also preferred not to have to start school with the NG tube – since it’s so much more conspicuous than the G-tube.  So, I eventually called to see if there was any way we could get it done sooner.  Why postpone the inevitable?

At first there were no openings until September, but just this week they called because there was a cancellation.  We go in a little over a week.  It’s the week before school starts, so that is good.  Besides not having to start school with the NG tube, he won’t have to miss school to have it done.

In the midst of all of this (a few weeks ago), Silas was complaining of arm pain.  We’re still not exactly sure when he hurt it.  We went to a local doc-in-the-box who said Silas had a buckle fracture and wanted to put his arm in a splint.  When I found out it could not be taken off and was not waterproof, I decided that was just a little more than I could handle at the time, and we left with it in a sling.  We then saw an orthopedist who said it wasn’t too bad, and he let me choose between a waterproof cast or a (removable) brace.  Of course, by this time, Silas was all excited about getting a yellow cast (his favorite color) that all of his friends could sign.  I talked him into the brace, and the doctor found a gray one that people could still sign.  (Yeah!  Problem solved.)  The brace also helped us avoid another appointment to have a cast removed.

During the day, Silas wears the backpack that holds his feeding pump and other supplies.  At night, he has a pole that everything hooks to.  It’s very cute to watch him roll his pole down the hallway after he wakes up each morning.  I smile every time I hear those little wheels rumble.


Thursday, August 2, 2012

Georgia Aquarium - 7/28/12

Our second trip (using our GKTW Pass) was to the Georgia Aquarium.  Criss and I had been to the ones in Chattanooga and Gatlinburg but not Atlanta.  It’s the world’s largest aquarium, and boy was it busy!

There’s a 1 hour time difference between here and Atlanta, plus a three hour drive.  Thankfully, we left on time because by the time we had to pull over several times (for Silas’ feeding pump alarm going off), find the parking deck, walk to the aquarium, and stand in the Will Call line (for about 20 minutes), we barely made it in time.  (I had to give them our arrival time when I called, and they only give you one hour of “grace.”)

The hassle of getting there and into to the building was worth it.  Everyone was feeling good for most of the day, and we had a great time.

There were massive tanks…

And places where the kids could pet some of the animals.

They had an amazing dolphin show (no pictures allowed).  We also watched a fun 3D movie.  Silas wasn’t thrilled about going in (he was getting tired) but was glad he did.

And soon, it was time to leave…

Olympic Park was just across the road, and the kids begged to play on the playground before we left.  They did a little rolling around in the grass too.

It was good day, and the kids fell fast asleep on the drive home.


Wednesday, August 1, 2012

DeSoto Caverns - 6/9/12

Last October, Autumn was granted a “wish” from Magic Moments.  We were able to spend a never-to-be-forgotten week in Orlando staying at the Give Kids the World Village, and visiting Disney World and other local attractions.

When we checked out of The Village, we were given a special pass.  For up to one year, we can get into a long list of parks across the country (one visit at each park).  With the kids in school and me student teaching, we didn’t get to start visiting any of the parks until just recently.

Our first stop was DeSoto Caverns.

They have added so many new attractions since I was last there many years ago.

You can dig for “precious stones.”

You can pan for “gold” (and more of those “precious stones” – just in case you didn’t find enough of them in the sand box).  J

And there’s SO much more…

The people at DeSoto Caverns were so great.  They gave each of us an armband (normally $50 each) that let us into all of the attractions for as many times as we wanted.

About the time we made it to the bubbles, it started raining, but that didn’t stop us.  We just kept on going.  Although I didn’t get the camera out in the rain, we have a water balloon fight, shot arrows, battled with “guns” that shot plastic balls, and more.  We also toured the cavern earlier in the day – those pictures just didn’t turn out as well.  (We really need to get a new camera.  Our current one is 7 years old, and it’s not always focusing like it needs to.)

We had a WONDERFUL time, and we look forward to visiting some of the other places on our list.

Last Saturday, we headed to Atlanta to visit the Georgia Aquarium.  More on that next time.