Thursday, December 29, 2011

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.


Saturday, December 24, 2011

Our Year in Review ~ 2011

As we celebrate Christmas and the year draws to an end, I would like to revisit some highlights from the year.

The high point of the year was definitely Autumn’s Magic Moments trip to Disney World.  If you missed reading about it, you can go here:  Day 1, Day 2, Day 3, Day 4, Day 5, Day 6, and Day 7.

We are thankful to end the year with diagnoses for the children’s ongoing health concerns.  They have confirmed that Autumn has a Mitochondrial Disorder (Complex I) and a Cerebral Folate Deficiency.  She has started several new medications, and we can tell that they are helping.  Silas has been diagnosed with Chrohn’s Disease, fructose malabsorption, and multiple food and environmental allergies.  Now that they know what’s going on, hopefully they can find a way to help his pain and other symptoms.  (Read about the doctor visits here and here, and the results here.)

Autumn is enjoying first grade.  She is starting to come out of her shell a bit more and is very excited about participating in Upward Cheerleading at our church this season.  In September, we celebrated the 2 year anniversary of her adoption.  Silas is in Kindergarten and loves being around people and making new friends.

Criss enjoys working at General Pest Control, and he won a sales competition at work that earned us a free cruise last February.  He’s always been very artistic and has found a little bit more time to paint this year – always hard to do with the children around.  He’s also painted several props and signs for programs at church.

As for me, I enjoy being involved with the choir and Praise Team at our church as well as coordinating the Children’s Choir.  I have taught a Children’s Literature class as adjunct faculty at Southeastern Bible College every other spring for several years.  This fall they asked me to teach Curriculum Development, and in the spring, I’ll teach Teaching Methods 2.  I’ve also been working on adding a Special Education endorsement to my teaching license.  If all goes as planned, I’ll be student teaching in special education this spring, and then I’ll be finished.  I have greatly enjoyed blogging about our lives this past year.  Read my favorite post from the year here.  I was also excited to have an article published this year and participate in a radio interview on helping those with disabilities. 

If you’re visiting the blog for the first time, hope you’ll drop by again.

Hope you and your family are doing well this holiday season.  Joy to the World, the Lord has come!


Thursday, December 22, 2011

South Carolina - Test Results

The nurse called with our test results this morning.  But first, I will share a couple photos from our trip.

Here's Silas in his child-sized wheelchair following his endoscopy and colonoscopy.

And here are a couple pictures of the patches on his back from the allergy testing.

One afternoon, Silas enjoyed playing at a nearby playground.

I mentioned that we looked at Christmas lights one night.  The place we went had it set up for you to drive through to look at the lights.  At one point, there was a large field with deer, cows, zebras, etc.  Vehicles drove randomly about the field, trying to feed the animals.  Here's a glimpse of a cow who stuck his head in our van.  Criss was trying to feed him apples, which fell onto my shirt.  I squeeled as the cow started nibbling on my shirt.  Silas just laughed and laughed.

Now for the results...  They have determined that Silas has Crohn's disease.  It is especially affecting his colon and small intestine at this point.  On top of that, he has the problem with fructose malabsorption as well as multiple food and environmental allergies.  The allergies include milk, egg, beef, pork, dust mite, and mugwort (which cross-reacts with celery, apple, kiwi, peanut, fennel, carrots, parsley, coriander, sunflower, and peppers).

They are taking him off the anti-inflammatory medication that he's been taking and putting him on a new medication.  I'm not sure how to spell it, but I think it was Apreso?  The pharmacy had to order it, so it won't be in until tomorrow.

Along with the new medication, we have to make sure the allergens are eliminated from his diet as well as all forms of fructose.  This includes wheat - a fructan.  All the "ol" sugars - manitol, sorbitol, etc. also cannot be used.  We had pretty much eliminated all of these anyway because he was having such terrible problems with any type of sugar.

I am grateful that we finally have some answers and someone that is helping us through these diagnoses.  Yesterday was Silas' sixth birthday.  It has taken us six very long years to get to this point.  I only hope they can find a way to manage his symptoms.


Magic Moments Trip - Day 7 (Oct. 15)

It had been a week of fun activities.  When I asked the kids what they wanted to do before we left, they mentioned a number of activities around the Village that they hadn’t gotten to yet.

Two mornings a week, the kids can ride horses.  So, we ate some breakfast and headed to Keaton’s Korral.

From there, we headed to the Village playground that is designed like a Candy Land game board.

After packing our bags and checking out, we played Marc’s Dino Putt, road the train, and played a few other games.

On the way to the airport, we dropped by Downtown Disney to do some final shopping.

We were sad our week had come to an end.  Everyone was SO nice, and it was refreshing to be surrounded by such kindness. 

About once a week, Silas will say, “I want to go back to Disney World.”  I always answer, “Me too, Buddy.”


Saturday, December 17, 2011

South Carolina - Dec. 2011 (con't)

Day 4 - Thursday, 12/15/11

This was our busiest day this week - with two appointments, and I'm thankful that Silas did well through it all.  He started the day not allowed to eat or drink again (for the second day in a row).  Silas was very thirsty, but we managed to get him out the door.

We were scheduled to check in at the hospital at 8:00 for his endoscopy and colonoscopy.  He was a little nervous, and the hospital staff were so nice to let Criss go back with him until he fell asleep.  Then, the IV went in after he was asleep, so he didn't have to know about it until later.  He was back for about an hour before they came and got us.  Thankfully, he woke up with a good disposition.  He happily chattered with all of the nurses - though he didn't always make perfect sense.  :-)

Dr. M gave us the pictures from the procedure and said he didn't see anything abnormal.  However, we won't have the biopsy results until next week.  After being discharged, we returned to RMH where Silas and Criss took a nap and slept off the rest of the anesthesia.

This afternoon, we returned to the allergist to have the patches removed.  (25 patches - I finally counted.)  We go back tomorrow for a final reading.

From Dr. J's office, we went to a playground Silas had been wanting to visit.  We also tried to stop at the outdoor ice skating rink on Main Street, but they were doing maintenance on the ice, and it wasn't open.  Right now, we're about to have dinner before going to look at Christmas lights.

Day 5 - Friday, 12/16/11

Friday morning, we had to get up and pack before heading to the allergist (Dr. J) one last time.  Check out time is 11, and our appointment was at 10.  It was so good that we were able to stay at the Ronald McDonald House.  They ask for $8 per night; anywhere else would have cost us $100 or so a night.  They also have food you can eat while you're staying there, and different people/groups bring in dinner each night.

Dr. J took one last look at Silas' back (where the patches were), and we talked about the final results of the testing.  The prick testing showed allergies to egg, house dust mite, and mugwort.  Mugwort cross-reacts with celery, apple, kiwi, peanut, fennel, carrots, parsley, coriander, sunflower, and peppers - so those should be avoided as well.  Some of them may be tolerated if cooked.  (Though many of those would still trigger problems with his fructose malabsorption.)  The patch testing showed allergies to beef and pork.  These two things he was still eating, and I knew I was going to need to remove them from his diet soon because they were bothering him.  (He was starting to wake up extremely irritable every time he had hamburger meat the day before.)  Dr. J also said to leave out milk because of the types of reactions Silas has had to it in the past.  Milk was also one of his original allergies (when he was tested at age one).  Dr. J also said that prick/patch testing for milk is very unreliable.

At this point, we know of the above allergies and the fructose malabsorption problem.  We are still waiting for the biopsy results which we should hear back from sometime next week.  Then, we will have a little bit clearer picture on what our next step will be.

Silas has been very irritable today.  Can't say if it's from the prick testing (that made him so sick on Tuesday), the fructose drink (for Wednesday's test), the Jello, the anesthesia, the IV, or all of the above.  It's good to be home, and hopefully he will settle back down soon.


Thursday, December 15, 2011

South Carolina - Dec. 2011

Day 1 - Monday, 12/12/11

We left home about 7:00 this morning, changed time zones, and arrived in Greenville, SC, around 1:00.  Our first stop was at the Ronald McDonald House (RMH) where we were fortunate to get a room for the week.

After unloading the van, we found our way to our first appointment with Dr. M, the GI doctor who sees a lot of kids with Eosinophilic disorders.  No pokes, just talking - so in Silas' mind, it was a GREAT visit.

We made a trip to Wal-Mart to get a few supplies for the week, and headed back to RMH for the evening.  Silas became friends with the son of one of the ladies who works at the RMH during our first visit.  He was thrilled to see his friend again this evening.  They enjoyed playing together in the toy room before we called it a day.

Day 2 - Tuesday, 12/13/11

We definitely took a turn for the worse today.  Dr. M had us start giving Silas the medications to start cleaning him out for Thursday's colonoscopy.  We also saw Dr. J, the allergist, for the first time today.

The allergist did 49 "pricks" before deciding on the items for the patch testing.  I haven't counted those yet.  They'll stay on his back until Thursday.  5-10 minutes after the pricks, Silas turned pale and started complaining of stomach pain.  He hasn't been well since.

So, we've spent the afternoon resting and washing sheets, towels, and soiled clothes.

Day 3 - Wednesday, 12/14/11

Silas perked back up just before bedtime last night.  This morning was the test for fructose malabsorption, so he couldn't eat or drink anything when he got up.

We arrived at Dr. M's office by 7:45.  He drank the cup of liquid the nurse gave him for the test, and about 15 minutes later, he threw it up all over the waiting room floor.  How lovely!

They tried again, this time with only half of the normal dose, and he was able to keep it down.  In the end, the test was positive for fructose malabsorption.  We'll have to wait for the results of the other tests before coming up with a definite plan.  The biggest problem is that the dietitian said we need to eliminate the chicken nuggets he's been eating.  You know, one of the THREE to FIVE foods he eats over and over again for pretty much every meal...  We need to completely eliminate wheat, and that was the only wheat he was eating.  We had already eliminated all other known sources of fructose.

After the visit, we walked around downtown Greenville before returning to RMH.  Right now, we're in the process of getting the rest of the medicine down him that he needs to take in preparation for the colonoscopy.  After throwing up the other liquid this morning, I'm not sure we're going to be able to get it in him.  He has, however, enjoyed eating Jello today.  Such a rare treat!


Thursday, December 1, 2011

Magic Moments Trip - Day 6 (Oct. 14)

Friday was our last full day, and we packed it full of activities.  We began with a Character visit from Scooby-Doo.  Before leaving the Village, Autumn had her nails done (along with a little makeup) at the La-Ti-Da Royal Spa, and Silas got an airbrush tattoo.

Somehow, we visited three different parks in one day!  We began at Hollywood Studios where the kids got to meet Handy Manny, Little Einsteins, a green army man from Toy Story, Buzz Lightyear, Woody, Lightning McQueen, and Mater.

We also saw some great shows:  Disney Jr. and the Lights! Motors! Action! Stunt Show.

From Hollywood Studios, we had a short visit at Epcot to see if we could find any more characters.  We ended up riding several rides – including Soarin’ – before catching a ride to Magic Kingdom.

Since we had not found the Princesses and Fairies on our other visits to Magic Kingdom, we had to go back one more time so Autumn could meet them before we left.  What made it difficult was that it was late in the day by that point, and everyone was heading into the park for the parade and fireworks.  Autumn was thrilled to find Princess Aurora (Sleeping Beauty), Belle, and Cinderella.

By that point, Silas realized they were about to have the parade again, so he begged to watch it a second time.  Why not?  The nice thing was that we had a much better spot this time and could see everything better than we did the first time.

After the parade, we fought our way through the crowd to the place where the Fairies were located.  Tinker Bell and Rosetta were so very sweet, talking and playing games with the kids.

As we made our way to the van, attempting to beat everyone leaving the fireworks show, we caught glimpses of the fireworks overhead and listened to the music from “Wishes.”