Leili's Hair

Me: Come here, Leila, let's fix your hair.

Leila: But it's not broken.

One More Thing....

In different news, since we stopped the antibiotic, Asher's congestion has returned. It increased each day until now it's nearly back to what it used to be. Harumpf!

Kindergarten Asher

Asher started Kindergarten on Monday. In his typical "go with the flow" attitude, he just went along with everything. He got to his room and found his seat and began playing with the blocks at his space. I didn't cry. It was a good start to a new year.

When I picked him up from school at the end of each day, Asher told me about what he did that day at school. He got really animated when talking about the puzzles he did and the gym time he had. Puzzles and physical activity are two of the most difficult things for Asher, so it surprised me that he highlighted those activities.

Asher's new school is really amazing. Every single thing about this school is exceptional. If it were closer to our home, it would be perfect.

At dinner last night, Asher asked if the next day (Saturday) was a school day. Since Asher is always asking for "stay-home days" (week-ends), I thought he'd be happy to hear that the next day was a stay-home day. Instead, he was sad. He wanted to go back to school.

Some Noteworthy Observations

Since Asher started the antibiotic to kill the MRSA in his gut, we noticed some interesting items.

1. His dragon breath is gone. For as long as he's been on this planet, Asher has had the absolute WORST breath on the planet. No amount of tooth-brushing, dental flossing, or mouth-rinsing reduces the smell. But now it's gone. Completely gone. No more dragon breath for Asher.
2. Interestingly, even though we're in the height of allergy season for grasses (8 on a scale from 1 to 10, with 10 the highest) and even though this allergy season normally kicks his butt and HAS kicked his butt recently, today I noticed that Asher's nose is completely clear. No congestion. No dark circles or puffiness under his eyes. Asher ALWAYS has congestion and dark circles under his eyes, by the way. Today it's completely gone.

I can figure out some logic for the breath, but the lack of congestion baffles me. I'm incredibly grateful and thankful for the two changes.

Kindergarten Asher

Yesterday, Asher attended his kindergarten orientation. My "life of the party" child gets amazingly shy when introduced to new people and places. He was stuck on me so strongly, I firmly believe he would have crawled back into the womb if he could have.

The school is absolutely beautiful. The school's brand-new building was completed just a few weeks ago. They are still working on a few areas outside the building. The design is practical and breath-taking. The main doors open to a large 2-story meeting room with lots of big windows, which display the foliage of the trees outside. Everyone walking in utters an involuntary "WOW!" while they walk inside. It's gorgeous.

Asher's kindergarten teacher is the kind of teacher one wishes for all children. She has white hair and knows exactly what to say in every situation and promises a year of adventure and exploration. Her wish list includes bird food, empty coffee cans, and butterfly nets. Class size is limited to 15.

Of the two kindergarten classes, one is nut-free and the other isn't. Naturally, Asher was placed in the room which isn't nut-free. Yeah, that makes sense. Yes, we're talking about it and making a plan to keep him safe. This teacher, even when I talked to her about Asher's allergies, she didn't blink an eye and said, "We'll do everything we need to do to keep him safe. Let's you and I talk about what we need to do." A parent's dream.

The biggest problem with this school is that it's perfect. We needed a place where Asher could attend for just a year, then repeat kindergarten next year at the same school Simi attends. As good as this school is, we're not going to want to leave it. Ah, the best-laid plans...we'll see how it goes...

In other Asher news, he's slowly recovering from this latest allergic reaction. This latest reaction took it all from Asher and left him completely annihilated. Today was the first day in over a week that he ate solid food. Yesterday was his first good sleep and today he showed a bit of energy. Signs of recovery - phew!

Speaking of Crashes

We identified the cause of Asher's most recent allergic reaction. He suffered an allergic reaction from the Bactrim that we're giving him to kill the MRSA infection. I figured it out on Monday after a rash popped out all over his body. A google search confirmed that others have had the exact same side effects as Asher. Why aren't these side effects listed on the literature given with the medication????

It's encouraging that he managed to go for 9-12 days before suffering a reaction. And hopefully that was enough time to rid his body of the MRSA. We intend to do a follow-up test to check and will use a different antibiotic if necessary.

Asher is still recuperating. This reaction wiped him out completely.

In other news:

• On our way to the pediatrician's office yesterday to have him checked out, Asher and I got into a car accident. So we then got to go to urgent care for both the allergic reaction and the car accident. We were driving the Subaru. I'm hoping that it gets totalled; I've always hated that car.
• Our sweet 14 year-old Spotted Dog is really struggling health wise. He was still behaving like a puppy just a few months ago; now he's acting his age. The thought of losing him is devastating.
• I got a new job!

CRASH!

Asher's good energy wave has come to an end. In fact, Asher is now sicker than he has been in a long time. He's completely crashed.

Asher was riding such a good wave for such a long time that we got used to it. In a way, I think we started taking it for granted that he was feeling so good. It started feeling normal to us. This low he is in right now is the polar opposite of the high he's been riding. I haven't seen him this sick since we trialed beef.

Asher has spent most of the week-end on the couch. He's complaining of a head-ache, tummy ache, full body ache, and whatever else he can complain about. It hurts to eat. He has no energy and spends every possible moment sleeping. Thank G-d for elemental formula, which lets him drink his nutrition. The elemental formula will get him through this bad spell.

Now we have to figure out the cause. That's the fun part. Let's figure out what seemingly innocuous thing is destroying my kid. Of course we have to figure it out quickly, to help get Asher out of the state he's in. Ugh.

Fools

When I was in the Peace Corps, I drove a motorcycle. I remember the months before I got that motorcycle. I had to walk miles - each way - from my house to my job. And it was hot. Many times I got a ride because lots of guys wanted to have "the american" on the back of their bikes. Then it was a hassle getting rid of the ride. And when I had to go to town to buy food or get my mail, it was a day-long trip in a crammed "gua-gua". So, I was thrilled when I learned that Peace Corps was going to provide me with a motorcycle.

I chose a Honda 100. They had Honda 125s, but they were so tall (or my legs were so short) that my feet couldn't reach the ground. I loved that Honda 100. It was similar to a motocross bike and went everywhere. I took that bike on goat paths, across rivers, up mountains - you name it. Without a doubt, it changed my Peace Corps experience.

Now, in the Dominican Republic, where I lived, it was HOT. I'm not joking. I lived in the desert part of the DR and it routinely got to about 100 degrees Fahrenheit. Although in the winter it got "so cold" that you had to wear long sleeves while riding the motorcycle at night. Brrr. Anyway, it was so hot that I'd want to wear lightweight clothing - and as little of it as I could possibly get away with.

Thing is, I'm riding a motorcycle. And since one just never knows when an accident is going to happen, the best thing to do is "be prepared". So...I wore jeans while riding that bike. Thick jeans. Yes, it was hot. Those jeans saved my legs from tons of stuff that could have happened. Like, when I fell off my bike while climbing a goat path. Or when someone ran into me at an intersection. I'm glad I wore those jeans.

Although I LOVED that motorcycle, I'd NEVER ride one in the US. People drive faster here. I think it has to do with the fact that we have paved roads and highways. Thing is, if you fall off your bike while driving these big speeds, you can get REALLY hurt. And the big cars in the US don't see motorcycles, so they cut you off. Even now that the price of gas is prohibitively expensive, I would never even consider getting a motorcycle. Folks who ride motorcycles say that it's not a matter of IF, but rather WHEN, that accident is going to happen. That money that you save on gas doesn't do you ANY good if you get killed or seriously injured in a motorcycle accident. It's just not worth the risk.

But imagine my surprise when, the other day, I saw a young lady riding a motorcycle dressed in a light summer dress. She was on the city streets near Duke - where traffic cuts in and out and all over the place. The wind blew up her dress and showed her panties to the entire world. Aside from the obvious, I couldn't help but think that she's risking an awful lot of road rash when the inevitable fall happens. I'm sure that lots of drivers took their eyes off the road when she passed by - further increasing the risk of a crash. She did nothing to change my impression of Duke students - but that's a different blog entry for a different day.

So, folks, if you're going to ride that motorcycle, be sure to protect your skin and body as much as you can. Keep in mind that it's very difficult for folks in cars to see you - so you have to be prepared. And don't forget the helmet. Or better yet, get an economical vehicle with a good mpg rating. Some things are just not worth the risk.

Pre-School Graduation

Today was Asher's last day of pre-school. He starts kindergarten soon.

At Asher's pre-school, they have a small graduation ceremony just before lunch. They craft a graduation cap out of cardboard and tape and make a tassel from thin rope. They create a diploma and the head of the pre-school and the teachers sign it. Then, during circle time, Asher was called up and each child said a few words to him. He received his diploma. Then everyone gave him a great big hug. Then he got to have his last lunch in the big cafeteria. Now, next time he returns, it'll be as a visitor.

We didn't prepare Asher as well as we should have for the transition. I mean, he knew that he was leaving and going to kindergarten. But we didn't tell him until yesterday that he would be graduating today. And we didn't put it together for him that today would be his last day - never to return. Truthfully, I didn't put it together in my head either. It took me by surprise too. I didn't prepare any thank you for his teachers. And now I feel absolutely crappy about that. I know I can go back and do something - and I will. But it's not the same.

But back to Asher: We told Asher this morning that today was his last day. He got very sad and said that he wanted to graduate -- and then go back. He wants to stay in preschool. He has so much fun there. He has all his friends there. He wants to stay.

I'd like him to stay too. He's not ready for kindergarten. But those are the rules.

Back to Asher again: He had a wonderful graduation ceremony. He had a wonderful lunch. Then, when Simi came home from school, the two of them got to play at Chuck E. Cheese to celebrate.

And now, ready or not, Asher's on his way to kindergarten.

Gabby

Here is a news story about a little girl named Gabby who has the same disease as Asher.

That Gabby-girl is a little cutie!

Introducing Petita

Two year-old Leila is a great big personality in a teeny tiny little pint-size body. She's under the 25th percentile in height for her age group and 95 percentile in weight. But what she lacks in size, she more than makes up for in attitude. In reaction to something, she crinkles up her little nose and says, "I don't like it", with such gusto and spirit that you truly believe her and back away.

As you know, we used to call her "Leili", which is short for "Leilita". In pure Leila form, she replied, "I NOT Leili, I'm Leila!!!". OK, then.

So imagine our surprise when, the other day, Leila announces that her name is "Petita".

"I NOT Leila", Leila says, with her nose all crinkled up. "I Petita." OK, Petita, eat your breakfast, please.

Petita toddles off after her brothers, following them in whatever they do. Jumping into the trampoline pit - no problem for Petita. Running after and kicking a soccer ball - sounds good. Making your hand in the shape of a gun and chasing your brothers around the house while making shooting sounds at them - that too.

Then there's the sweet side of Petita, where she hugs her baby doll as she drags her across the room. Or when she goes into her pretend kitchen and fixes you a meal and toddles sweetly over to you and hands you the plate full of pretend "eggies and pasta" or an empty cup of tea.

I can't wait to see what name she chooses next.

How to Gain/Keep Customers

Sometimes I wonder how certain companies can stay in business.

Take DHL for example. When we were submitting Asher's bodily fluids for testing, we had to mail one of the samples to a laboratory in Paris, France. The instructions on the form said to contact DHL for shipping. So I did. Someone from DHL came to the house to pick up the sample. He gave me a form to complete. After I completed the form, I handed him the package. I also expressed concern that they requested that my credit card information - to pay for the package - be taped outside the package for everyone to view. I didn't see that as a safe practice. Off went the package.

Days later, I learned that DHL lost the package.

While waiting on hold with DHL for the fifth time, I listened to the muzak and hold messages. It said that they have a money back guarantee. If not fully satisfied with their service, they would refund customer money. After the customer service representative admitted that the package was officially lost, I asked them to refund my money. "Not possible", says the customer service representative. "Huh? Your message says that you have a money back guarantee. Plus, you lost my package. You didn't deliver your end of the deal. I shouldn't have to pay," was my reply. "I'm sorry, that's our policy.", says the customer service representative. And she wouldn't budge.

Later, after filing a claim with DHL, I receive a letter from their lost control adjuster. It says that DHL is not liable for any lost package because it states that on the terms and conditions on the back of their air waybill. So, even if they lose a package, they claim no responsibility for losing it.

How do these people stay in business?

MRSA

Usually a lack of posts is a bad thing. In the case of the past two weeks, it simply means that there was nothing to say. Until now.

Yesterday, we met with the integrative medicine doctor to review Asher's blood, urine, and stool test results. To summarize: Asher has a huge amount of the MRSA bacteria in his gut and it's causing damage.

There are a few other minor issues which can be remedied, but the MRSA, obviously, is the big one. There were 50-60 pages of lab results and the ones that showed issues for Asher all point to the damage by the MRSA bacteria in his gut. If we take care of the MRSA (and, to a lesser extent, the Gamma Strep bacteria, which we can kill with the same antibiotic that we use for the MRSA), then his gut will heal.

After seeing these results, this is the first time ever in dealing with Asher's EE that I've felt hopeful that we're on the right track. I really and truly feel like we have found the cause - the reason for Asher's EE. I have read tons of medical journal articles which support the belief that harmful bacteria is one of the causes of eosinophilic esophagitis. I strongly suspect that if we can remove the harmful bacteria and help his gut heal, then his allergies will lessen.

The healing will not happen overnight. It's a 30-day regimen of antibiotic to kill the MRSA. We also have to repopulate his gastro-intestinal tract with beneficial bacteria too and create a healthy environment. And the gut heals slowly. But every journey begins with a single step.

We're on our way....