Samuel

I don't think anyone has any idea what's going on with Samuel.

He's now being referred to a metabolic geneticist. Our appointment isn't until March 17th so hopefully he can make ti that long.

He's sick and it's hard. What's really hard is knowing he's sick and knowing they don't know what's going on.

Ohhhh, Samuel

We got the results back from Samuel's biopsies. We found out a couple of different things:

1) Samuel's esophogus is damaged from all the vomiting he's been doing.
2) The inflammation in Samuel's small intestine is worse. He didn't have any lymphoids in his biopsy on 1/12 and he had them on 2/14, so obviously that's worse.
3) Samuel's body can't absorb fructose, sucrose, or lactose. He isn't allowed any food except the Peptamen Junior formula that he's on.

We're waiting for labs we took yesterday to come back. They're doing an Organic Acid test of his urine, Immunoglobin A & E and a test for Celiac disesase.

We're just trying to stay afloat as we learn more and more of Samuel's problems!!

Just a Cute Picture

Just a cute picture! Samuel holding the buzzer, waiting for his endoscopy at Cook Children's Pediatric Surgery Center.

Samuel's Endoscopy

Samuel had his endoscopy today and he tolerated it well. The doctor took 3 biopsies and we'll get the results back by Friday (we hope).

She did find that the muscle between his esophogus & stomach didn't close all the way due to damage from all the vomiting. Of course, that's not what's casuing his problems but rather a symptom of his problems.

Samuel continues to have days where he vomits profusely & is in considerable pain. Next up? An abdominal ultrasound tomorrow.

Endoscopies & Such

Samuel went to the GI today. His previous GI (before we switched) performed an endoscopy & colonoscopy on 1/12. Unfortunately, though, the doctor didn't test for something that Samuel needs to be tested for so now they have to put him under full sedation AGAIN to biopsy & send the biopsy to Michigan. I'm very frustrated about that. Really...next time you put my child under anesthesia biopsy & test for EVERYTHING.

He's also seeing an OT and having a complete abdominal ultrasound done.

I don't know what our plan is. We've talked about seeing a naturopath or looking into some non-traditional forms of medicine, but at this point I don't know. We're busy enough with all the crap they've got scheduled!

Samuel's Sickness

Samuel continues to vomit and have diarrhea and he's also in a great deal of pain. He'll have 3 symptom-free days, then it will all start over again. He's been seeing a pediatric gastroenterologist who's run many tests. However, all the tests have revealed are evidence of SYMPTOMS (ulcers, inflammation, irritation in the esophogus from vomiting).

I sat down and had a long chat with our pediatrician today. They really don't know what's causing all of Samuel's symptoms. There are literally thousands of conditions it can be and they have to rule them out one by one. This is going to be a long ordeal....

In the meantime, we're on a special formula for GI Impaired-Children (Peptamen Junior) and three medicines: Levsin for pain, Carafate, and Cyprohepadine. Just keeping up with Samuel's daily medications and keeping him hydrated is a challenge in itself...there's not much else that goes on around here!

We're going to have to switch doctors when we move in 3 weeks and I'm nervous about that. However, however Samuel comes, we think we'll KEEP HIM~!

Effects of Doman

I guess I'll do a "Where are they now?" type post. We did a full Doman program with Timothy including reading, math, encyclopedic knowledge, physician program, swimming, etc. He is now 4.5 years old and here's where he's at.

Overall, Timothy's favorite words are "I don't know!"

Reading
Timothy doesn't read. He enjoys books and has several memorized, but he can't read on his own. He doesn't know phonics. He recognizes some letters but not all. When we ask him what a letter is he normally responds "I don't know!" Then again, though, sometimes he seems to read things out of nowhere. For instance, today he called a brand new video game "Superhero Squad" and there was only writing on the package, no pictures. We hadn't told him that. So he might read more than we know and not say it but, from what we know, he has average 4-year-old abilities.

Math
Timothy can count to fifty. He understands the concept of quantity but doesn't seem to have any ability to count the number of cows in a field or anything. He recognizes some numerals but not all of them.

Development
Timothy has no confidence in himself in writing. He'll "scribble" some and he'll write a few letters, but he can't yet write his name. Timothy can dress himself well but doesn't seem to care if his underwear is on backwards or if his shoes are on the wrong feet. Timothy loves to play with other children. He's extremely loving, especially towards Samuel.

Overall Knowledge
Timothy's general knowledge & vocabulary are much more advanced than a child his age. He uses words like "perrogative" and "enormous" and seems to understand advanced, adult conversation. He knows facts, like a spider is an arachnid. He knows the different types of dinosaurs and the basic facets of electricity. He has a good grasp on geography.

We thought that Timothy would be reading and computing like a calculator at this age...but he isn't. However, I don't discredit the Doman programs at all -- if I had to go back, I would do them again. I know that Timothy had a significant brain organization problem and that everything we did brought him to where he is today. We're thrilled to have an average, playful, curious child like we have.

There are a few changes I would make if I could go back in time:
1) I would do Doman reading program, but I would spend less time making Doman-style books and more time reading "real literature"
2) I would do the encyclopedic knowledge, but I wouldn't beat myself up about having to have at least 2000 cards done by the time the child's 1. I would spend less time making cards and more time playing Play-Doh.

Timothy hasn't retained all the abilities he had as a child, but the whole purpose is to stimulate the brain, not necessary to teach. Timothy learns very easily now and I know it's because of our efforts we put in when he was little.

We do very relaxed homeschool with him now. With a sick brother, moving homes, and life in general chaos that's all that we can hope for. He can operate a computer, he loves to read, and "projects" are a favorite in this house. We look forward to years and years of learning alongside him!

Time4Learning Activities

There's an advantage to homeschooling. While everyone else was out of school this week due to the ice and snow, school continued on at our house! Timothy's now completed all of PK1 on Time4Learning and he's finished 7 out of 21 units on PK2. After he finishes PK2 he'll be on to kindergarten!

On some of the units, Time4Learning has activity suggestions. The unit on color mixing & primary colors encouraged us to make a crazy cake...so we did! What do you think? We also made colored ice cubes and watched as they turned water different colors.

I love that we're in a place that we can keep our children home. We don't have to worry about what they're being taught for 8 hours a day or if they feel the pressure of the state-mandated tests or if they're being ignored while a teacher deals with a disruptive kid all day. We're not the perfect teachers, but we're trying!

Snow & Samuel

When Samuel was a few days old, we got a huge snowstorm. David had to go back to work and my mom and dad drove to our house to drive him there in the ice. Our electricity ended up going out and we all ended up at a hotel....

This year, we got snow again right around Samuel's birthday. It's amazing that it's already been a year. It's amazing that it's only been a year!

Happy Birthday to Samuel!

Drats! I mean to post yesterday but with the weather and our wonderful "rolling blackouts" in Texas I didn't get a chance to.

A year ago, I posted this:

After meeting with a new doctor this morning and assessing the situation, Samuel will be delivered by C-section tonight at 5pm.

Of course, this isn't what we were hoping and praying for. This isn't the end to the pregnancy that we were expecting. However, it is what it is...

I have to report to the hospital in 2.5 hours and I will have to be on magnesium, which is the worst part. The magnesium will make the baby "depressed" for the first 24 hours and he may have respiratory problems, but we're just praying that God doesn't allow that to happen. The magnesium will make me feel like I've been run over by a truck, but that's not a big deal to me. I'm more concerned about how Samuel will take it.

Pray for us!! We're meeting our baby very very soon!

Samuel has really thrown our family for a loop!! We thought we knew what he was doing until he came along. Apparently, we had no idea. We've had good times and bad times, but we're just so blessed that Samuel is a part of our family.

Happy Birthday to our cute little "Savage Sam." May you continue to wreak havoc all the days of your life ;-)

Smart Samuel

Samuel is a smart guy. We've been doing reading cards, math dots, and encyclopedic knowledge with him. Over the last week, we've probably given him 5 problem-solving opportunities...and every single time he got the answer right!

We were a bit surprised. When we asked him to choose the right card we figured he'd walk away and start tearing up a magazine or something. Instead, he looked from card to card, tapped the right one, and then walked away and started tearing something up.

We haven't done the extensive program with him that we did with Timothy, but I think his brain has been stimulated a great deal and we've grown plenty of neurons.

ALSO--he's so adept in the walking department. He doesn't crawl at all anymore and walks for transportation all the time. He no longer needs his arms to balance!