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. L 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 9^th 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!!!)

Janel

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.

Janel

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.

Janel

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.

Janel

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.

Janel

Silas - Late Spring & Summer 2012

After our many failed attempts to find a medication or other treatment that would relieve Silas’ symptoms, we went back to see our GI here in Alabama.  We had not seen him since last August – prior to our trip to SC.

I brought up how concerned I was about Silas being malnourished for so long (as determined by his pre-albumin levels).  He said we could put in an NG tube (that goes through the nose and into the stomach) to see if Silas still tolerated Elecare.  Elecare is the one thing that Silas always did really well on (if he wasn’t eating anything else with it).  The problem was that he refused to drink it any more.  It smells bad and tastes even worse.  When he quit drinking it four years ago, he ended up in the hospital for 2 ½ weeks.

I wasn’t surprised that the GI doctor mentioned some type of feeding tube.  He’d never mentioned it before (other than having it in the hospital), but it’s something I always knew was a strong possibility.  What really caught me off guard is that he wanted to put in an NG tube first.  Silas had an NG tube during that 2 ½ week hospital stay.  It was the single most horrific experience of our lives.  They take this long tube and shove it down your nose – all while you are awake!  I’ve mentioned before that it took FOUR adults to hold him down and a FIFTH to put in the tube – and it had to be reinserted multiple times.  I had promised myself that we would never do that again.

The second thing that that surprised me was that he said we would put Silas on continuous feeds.  This entails Silas either being hooked to a pole or wearing a backpack (that holds the feeding pump) almost 24/7.  I definitely wasn’t expecting this.  However, with the amount of inflammation and problems in his digestive system, this would provide the best chance of him absorbing the most nutrients.

I also asked the GI about other medicine options.  I knew there were supposed to be options that were stronger than the anti-inflammatories he’d been taking but less problematic than systemic steroids.  He said we could try Entocort.  It’s a steroid, but it stays in the digestive system.  The GI said it’s only recently been out long enough for a generic to come out and people to actually be able to afford it.

So, the plan was to first see if Silas would drink vanilla flavored Elecare (slightly flavored nastiness).  Second, try the Entocort.  Third, consider NG tube.

Well, he refused to drink the Vanilla Elecare, so we had a talk.  (He’s really good about things sometimes if you try to explain it to him.)  I told him he had a choice (not meanly but matter-of-factly).  He could learn to drink the Elecare, or we could put in a tube that put it into his tummy for him.  We’ve met someone with a G-tube and backpack before, so he knew what I was talking about.  We looked at pictures of tubes on the Internet.  I told him to think about it.  Later that day, he said, “Mommy, I think I would rather have a tube.”  Sigh.  Who could blame him?  I don’t think I could drink large amounts of it every day either.

We moved on to the Entocort.  Second day he took it, he spiked a fever.  This is what he does when he’s reacting to something.  Found out it contains sucrose – which he’s never done well with.  Since this was our last hope before a tube, I wasn’t giving up easily.  We tried again, this time we started with one (he was supposed to take 3 each morning), then worked our way to two, and finally back to three.  First day on three, he ran a fever again.  We went back to two.  We did make it on two for three weeks (which is the amount of time they say it can take to kick in).  However, it caused all kinds of issues, and we had to quit at that point.

After talking to the nurse, we were scheduled to drop by the GI office and then be admitted to the hospital to get the NG tube.

Janel

Silas - Spring 2012

It’s time I caught you up on all that’s happened with Silas (and I’ll warn you now that it’s a lot of information).  From our week-long trip to see Dr. M in South Carolina, we found out that Silas has inflammation in his colon and small intestine consistent with Crohn’s disease, a disaccharidase deficiency, fructose malabsorption, bacterial overgrowth, and multiple food/environmental allergies. 

The question I had from this point was – Which is primary?

Generally, you don’t have this many unrelated things going on.  They are likely related somehow.  It could be that Crohn’s is primary, and the inflammation in his intestines has caused all of these other things to go wrong.  The problem is that Crohn’s disease in young kids is rare, and it would be extremely unusual to see Crohn’s in an infant – which is when all of his problems began.  It could be that the disaccharidase deficiency is primary, and that his inability to digest sugars caused the inflammation, which caused all of the other problems.  Or, there could still be a different problem (that we haven't found yet) causing everything.  No one seems to know.

The problem is that unless we figure out what his primary problem is, we may not be able to treat it effectively.  And nothing we’ve tried so far has made that much of a difference. 

Here are some of the things we've tried these past few months…

·        First, we had to eliminate the new food allergies they found.  This is the one thing that’s actually been helpful.  Eliminating foods is the one thing that always works.  (That’s why we’re down to about 3 foods).  Since we were already avoiding all forms of sugar, he was eating a lot of meat.  After the allergy testing, we had to eliminate beef and pork.  Beef was the one he was eating the most, we could see a definite difference when we removed it.  The testing confirmed a suspicion I had that hamburger patties were bothering him.  Any time he had one, it was nearly impossible to get him up and out the door for school the next morning.

·        Second, they had us swap his anti-inflammatory from Balsalazide Disodium (Colazal) to Apriso, which is supposed to be more effective in the small intestine (where is inflammation is still active).  We first tried it in the capsules (since he is good at swallowing things).  He had problems with the capsules increasing symptoms, so we finally had to open the capsules and give him just the granules.  He wasn’t any worse this way, but we didn’t see any improvements either.

·        They then had us try Sucraid.  If his primary problem is the disaccharidase deficiency, there is something called Congenital Sucrase-Isomaltase Deficiency (CSID).  People with CSID take Sucraid with every meal to help them digest sucrose.  He was screaming after taking it for just two days.  We had to stop.

·        Continuing with the CSID theory, we tried another digestive enzyme from Kirkman Labs.  It increased his symptoms as well.

·        During this time, I came across some very detailed information about the CSID diet and the foods that contain the smallest amounts of sucrose and starch (the primary problems in CSID).  I fed him a couple foods from this diet.  He threw up for NINE HOURS that night!

·        I called the doctor in SC again.  He said the one thing we hadn’t tried was an antibiotic to get rid of the bacterial overgrowth.  Silas took it for a couple weeks.  It might have helped slightly while he was on it, but it was nothing to write home about.

·        Blessed Springtime!  Silas always feels better in the spring and summer.  It was a great relief when the warmer air began to move in, and he at least had some relief from the cold temperatures.  Even his teacher commented on the difference in his behavior.

At this point, I wasn’t sure what to do next.  Our GI doctor here in town (though super friendly) has been very slow to act and keeps saying that he still hopes Silas will outgrow this.  Well, it’s been 6 ½ years already, and he keeps getting worse – not better.  Sitting around and doing nothing just isn’t an option.  We had gone to see the doctor in South Carolina because he sees a lot of patients with eosinophilic disorders – which is what we were looking into at the time.  I’m not sure if continuing to drive to SC will be helpful.

In the middle of trying to decide what our next step should be, I decided to go ahead and visit our GI doctor here in town to see if all of these new findings would give him any new ideas – or at least inspire him to be more proactive.  It was that visit that lead us to this…

And I haven’t even gotten to this yet…

Janel

Special Education & Student Teaching

Some of you may be wondering why I decided to student teach a second time.  So, I would like to share that story with you…

WARNING:  This may turn into a soap box.  J

My undergraduate degree was from Southeastern Bible College, so I graduated with a double major in Elementary Education and Biblical Studies.  After graduating, I taught first grade for six years at a Christian school, later leaving to stay home with my kids.  While teaching, I went back to school to earn my Master’s Degree (also in Elementary Education).

It was during those years of teaching in a Christian school and working on my Master’s degree that I began to have a great burden for students with special needs.  Because Christian schools do not receive government funding, they are not required to serve these students.  However, those with learning disabilities, attention disorders, and other “less severe” problems still make it into the classrooms.  Since I taught first grade, I could generally “get them through” to second grade.  I would help them during the school day or sometimes provide one-on-one help after school.  However, by the time these kids got to third grade or later, many of them just couldn’t keep up any more without extra services, and many would leave our school.  Some would even leave midway through first grade.  It broke my heart to see them go.  I loved them dearly.  The “unwritten rule” that I observed was:  “As long as you can keep up, feel free to stay, but don’t expect us to give you any special treatment.”  Now, you would never hear anyone say it like that, but that’s the way it was for the most part.  Yes, there was one special program that families could use – but doing so doubled their tuition, and it was only intended for students with learning disabilities.

This bothered me greatly.  For a while now, the public school system has realized their obligation to reach these students.  How can those who call themselves Christians refuse to help them?

Many of those who work in Christian education have been trained to object at this point.  They would say that the cost is too great.  I would argue that the cost is too great if we don’t help them.  And beyond this, if money is the ONLY reason, that is not a good enough reason.  If you look at Jesus’ life, who did He spend the majority of His time with?  It generally was not with those who “had it all together.”  The people He spent His life serving were the sick, the hopeless, those rejected or looked down upon by society – like the tax collectors and fishermen.  In addition, what are we teaching the kids in our Christian schools if they never come in contact with those who are different than they are?

For those schools that have realized the great need and begun to reach out to these students, the cost is often not as great as they feared.  I have seen various reports where schools discovered that while taking student with special needs into their schools, the other siblings in the family followed – thus filling the classrooms and offsetting the extra “cost.” 

Skip ahead a few months/years…  Criss and I take in (and eventually adopt) a foster child with delays and medical issues.  We work through years of Early Intervention, physical therapy, speech, occupational therapy, etc.  It comes time for her to attend school, and I have a great choice to make.  I graduated from a Christian school (and went back to teach at that same school for six years).  I can send her to this school or one like it – where she will be surrounded by the Christian influences I believe in - but not receive any help with her individual needs.  Or, I can send her to the public school system who is required to meet her needs but looses much of the Christian influence.  No parent should have to make this choice.  And it’s not about arguing over what’s best – public school, private school, or homeschooling.  It’s about allowing parents to have the choice about what best meets their families needs.  Families of children with special needs often have no choice.

I also I have a son with chronic digestive/allergic problems.  He is currently on an NG tube.  If we move to a permanent feeding tube, would I be able to find a Christian school to meet his needs?  Highly doubtful.  You see, it’s not just about kids with “severe” disabilities.  It’s the kids who may just need speech, PT, or OT services.  It’s about the kids with feeding tubes, diabetes, etc. that just need a nurse on the campus.  It’s about the kids who just need some help in a small group setting 30 minutes to an hour (or less) each day.

So, this is the reason that I decided to add the Endorsement in Special Education to my current teaching certificate.  In order to do that, I had to student teach again since none of my experience was in an “official” special education setting.

My ultimate vision would be to open my own Christian school where NO ONE was turned away for any reason.  I don’t know how or when this will come about – and I may never see it fully come to pass in my lifetime.  But for now, I can share my passion on this subject with you and others I come in contact with.

I could go on forever about this subject, but I will stop here for now. 

I had been home long enough that it was time for my teaching certificate to expire.  Since I had not been teaching and had no CEU’s, I needed to take 2 classes to renew.  I only needed 4 classes to add the Special Education Endorsement, so it was a good time to do it.

I appreciate anyone who’s stayed with this post ‘til the end.  We’ll move on to lighter topics in the coming days.  J

"As you did it to one of the least of these my brothers,

you did it to me."

Matthew 25:40

Janel

I'm Back!

It’s been a while, and there’s so much to write about.  The spring was extremely busy, and I had to put blogging aside for a little while.  I had mentioned that I was hoping to student teach in order to add a Special Education Endorsement to my current teaching certificate.  (My original degree was in Elementary Ed.)  It was a little iffy for a while, but it all finally came together at the last minute.  In order to make it through, many other things had to be put on hold for a while.

I’m hoping to go back and give a recap of some of the things that have been going on since I last wrote.  For now, I will leave you with a few pictures.

The kids are really into “craft time” lately.  They come up with their own ideas all the time.  Here they are a couple weeks ago as pirates.  They made their own pirate hats.  Note the “hooks” on their hands.  J

And this picture will give you a hint of some of the things I need to catch you up on.

Janel

More Test Results

The nurse called yesterday with more test results.  Silas' disaccharidase levels are low across the board.  She said this is very unusual and would indicate that there is damage to the lining of the small intestine.

Silas had already failed the fructose malabsorption test, and this new finding would explain why he has problems with other simple carbs - including sucrose and lactose.

She said they would likely want to do further testing to try to get a better look at the small intestine (since the endoscopy and colonoscopy can't go very far into the small intestine).

He's been taking the new medicine (Apriso) since last Saturday.  At this point, he's doing worse.  He's had problems with capsules in the past, so yesterday we started taking the medicine out of the capsule for him to take it, and we'll have to see if that helps.  I've read that the capsules can be made from beef.  I don't know if that's the problem (his beef allergy) or if they're just rough on his digestive system.

Janel