Today's Doctor's Visit: More tests scheduled

Today we met with a pediatric GI Specialist. He reviewed the lab results and also talked with us about the problems that David has had since birth basically. The portion of the blood tests that tests specifically for celiacs came back positive. That is a 90% indicator that David has celiacs. But, it is not for sure and it could be a false positive, he could also have other problems that make this test positive too, so we are going to check out several areas and re-test a few that we've done before. I'm going to list them out and try to put a little bit of definitions beside some of them to help explain them. I'm also going to list the times and places so that I can keep up with them (and Jason too).

Tomorrow, (Wednesday Feb. 13th ) David has his MRI on his spinal cord. They will put him to sleep for this test.

Monday, Feb. 18th at 8:30 (be there by 8:00) we will have an abdominal ultrasound to test David's pancreas.

Wednesday, Feb. 20th at 8:00 (be there by 7:00), David has some procedures done while asleep. They are going to take blood to run a variety of tests on him and then do an upper endoscopy with MAC and Flexible sigmoidscopy with MAC.

Thursday, Feb. 21st at 9:45 (arrive at 9:15), we have a sweat test for Cystic Fibrosis.

We will go back two weeks after the procedures are done to get our results.

An endoscopy is a diagnostic test to look at the lining of the gastrointestinal tract, including the esophagus, stomach, small intesting, and large intestine. it is done with an instrument called an endoscope. It goes down the esophagus and allows the doctor to see images of the digestive system on a tv screen.

Sigmoidoscopy is an internal examination of the lower large bowel (colon), using an instrument called a sigmoidoscope. The sigmoidoscope is a small camera attached to a flexible tube. It is inserted into the colon to examine the rectum, and the sigmoid and descending portions of the colon.

They are going to take biopsies of his intestines.

They are also testing for food allergies. They will test stool samples for: ova/parasite, giardia antigen, cryptosporidium, stool random fat, stool elastase, stool alpha-1-1 antitrypsin. They will test blood for: cbc with diff, cmp, esr, crp, amylase, lipase, tsh, free t4, iga quantitative, tissue transglutaminase IGA, Rast test.

Whew, I think that's it. Another busy week....

Back to Reality

As my clock went off this morning at 5 am, I realized that no one was going to tell me to have a magical day or tell me that it is "my pleasure" when I ask for something. Yes, it is back to reality. I'm going to miss the time that we all got to spend together this past week. Now, Jason has to go back to work, Daniel back to school and David registers today for 3K. Time goes by so fast.

This week will be an important one for us. I know I started posting some things about David previously, but never got finished. We went to see a specialist from Tulane about David's spine and he thinks it is possible that there could be a spinal cord deformity that causes David's scoliosis. We were sent to a neurologist to get an MRI of his spinal cord scheduled. That took forever, for the time is approaching. We have his MRI of his spinal cord done Wednesday. Then we go back to the orthopedic surgeon from Tulane to discuss results in two more weeks.

Also, David has had troubles since birth with many things. I've had him tested twice for allergies and tested once for cystic fibrosis. He's been tested by tons of doctors for other syndromes and disorders, but thank God, everything has come back normal, until now. I always had something nagging at me and after quite a bit of research after David kept getting VERY irritable after eating pretzels and sandwiches and chips, the name, "celiacs" popped into my mind. Then, coincidentally, I was on the phone with a friend and mentioned what was going on and she mentioned that it sounded like her friend's little boy with celiacs. So, I looked some more and all of the symptoms are just like what David struggles with (especially the irritability). So, I called our pediatrician and had a blood test set up to test for celiacs disease. After about a week, we got the test results back and they were positive, indicating that it is about 90% likely that he has this disease. We were referred to a gastrointestinal doctor who will probably want to do an intestinal biopsy to make a definitive diagnosis. We go there tomorrow. I cut and pasted some things about celiacs earlier in the blog, when I was trying to let some folks know what it was.
We are going to probably have to make major changes in our home to accommodate his diet, but it will be worth it if he starts to feel better, and to grow. He is not even in the 5th percentile for his age and this disease can cause short stature due to the nutrients not being absorbed by the body because of the gluten intolerance.

So, those are two of the big things this week. David registers for 3K today, I'm wrapping up an auction that I did online to raise money for a friend with cancer. We raised $759 from that auction. I'm so excited. Now, I have to collect the money and get the items out. Daniel has spring pictures, we have a PTA meeting and I get to keep twin babies for a friend on Friday. One is actually a little girl, so we'll have a little girl in the house for a little while. :-)

Should be an exciting week!

Misc. Pics.

More Epcot Day 3 Pics

David will need years of therapy.....

Jason thinks I'm just awful. I keep harassing everyone with the camera. I got the boys to pose for this quick shot before we entered Epcot on our third day of vacation. Here is the first shot:


Since David was sitting and Daniel was standing, I asked Daniel to sit down with David and for them to get close together. This is what came from that shot......

I couldn't help myself. He was screaming and crying and I had to stop to take his picture before I could go help him. Jason just thought it was awful that his own mother didn't just rush to his side. I was laughing so hard, it was hard to take pictures help him and try not to upset him too badly by laughing so much. It was hysterical.

Quick Update

We have been having a blast on our vacation. This is one of the most fun vacations I think I've ever had. It is so fun watching the kids have such a great time. They are loving every minute of it. Daniel is a complete chatter monkey. He has not hushed the whole time we've been here. Even when we left to go back to the hotel, David was telling us sleepily, "Turtle Talk-One more time". Today we went to Epcott and went to a lot of the shows. I know if I were a kid, I would have probably thrown a fit, but they did so well. We've watched shows about China in a round theater and learned about energy and watched the Turtle Talk show and some more that I probably don't remember.

We haven't had Internet access, so I haven't been able to update this like I wanted. I am actually in the lobby right now using my laptop battery to use the hotel's free wireless connection, so this is rushed. I'll try to go back and update better when I can.

We've been to Animal Kingdom, Epcott two days and Magic Kingdom twice. We go back to the Magic Kingdom tomorrow. We decided to forgo the day at MGM studios in order to go back to Epcott, we enjoyed it so much.

The boys are having so much fun!!! It is so fun to watch them. They are actually learning a lot too. David is surprising me at what he is comprehending at this age and the appropriate responses he is giving to things that I didn't even think he could understand. He has been mad that he can't ride some of the bigger rides and Daniel wants to ride everything. Not only is he a chatter monkey, but he is a speed demon. He loves the fast rides. I will post pictures in other posts....

Disney Day Two (Animal Kingdom)

A Movie for your Viewing Pleasure. I don't know when my 5 year old turned into a Rock Star. They grow up so quickly............

Whew, what a day! We had a really fun day today. Our day started off with a nice, hot breakfast at the hotel and then we caught the bus to go to the Animal Kingdom. Poor David decided to catch a cold over night, so he was quite a grump this morning and sneezing up all of that yucky stuff. Once he made it to lunch though, he started to perk up.

When we first got to the Animal Kingdom, Jason went one way to get a fast pass to the Safari ride and I took the kids to the kiddie park, the Dino Land. On the way over, Daniel informed me that he didn't like dinosaurs and didn't want to go. Then, we came across Pooh and Piglet and decided to stop to get autographs. We bought both boys autograph books and pens. Well, what a difference two years makes. David does NOT like characters that move in real life. He screamed and cried and had a fit. That was fun. Then I drug them down to the kiddie park and drug David kicking and screaming on the Triceritops Twirl. With him, he always says no to riding rides and then he loves them. This was the same case. He liked it and was even thrilled later in the day when we went back to it.

We really did have a fun day and I was so amazed at how doggone HOT it was for February. It is just amazing. Jason and I rode some of the big rides by doing the kiddie swap and we saw the Nemo musical production, went on the jungle safari, played in the playground and dug for dinsosaur bones, watched the parade (twice), ate at the Rainforest Cafe with a huge snake hanging over our heads and a monkey above us not too far away. Jason and Daniel went on the river ride and had so much fun, Daniel wanted to do it again. They rode it twice and were drenched. At the end of the day as we left the park, Donald Duck was outside and David still wouldn't go see him, but he would allow me to get Donald to sign his autograph book and even waved at Donald so maybe there's hope for tomorrow (Epcott) at the parks.....

Here are some photos from today. Stay tuned for more of our adventures......

Whew....Good Night.....

Disney Day One (Travel Day)

Hello everyone. We are here and unpacked. I know I haven't updated this blog in a while, but at least, I can put some Disney stuff up.

We had a good ride over today. Took a little scenic route to Miami complements of Debra (that will teach Jason to go to sleep and let me drive when an Interstate change is up ahead). Actually the real story is Jason was having a hard time staying awake, so he asked me to drive. I did and he told me that I needed to take a right when I saw the sign that said Orlando, South and that would take me to Interstate 95, he thought. Well, he was sleeping so good, and I passed some exits that said Lake City (South) and the traffic just died off after that point, so I kept on driving, so proud at what good progress I was making. I thought to myself, Jason is going to be so surprised. :-) Well, he was, when he woke up and saw we were still on I-10, he sure had a surprised look on his face. Apparently, the traffic died off after the exits because everyone else was going to Orlando to go to Disney World and the Lake City exits were where I should have turned to go to I-75. Who knew? So, we had to turn back around and back track. That put everyone in a pleasant mood and got David chanting, "home-now?". But, it will just add to the memories that we will have for this trip.

We made it to the hotel at about 5:40 EST and the kids got to check in at their own little check in desk. Our room is great. We have a little kitchen area with a kitchen table and a couch and chair and tv. The couch turns into a bed for the kids and then the adults have their own room with a tv and then a little vanity area and bathroom. It is great!

Goodnight to all!