Good News to Share

When Asher began physical therapy, he identified three long-term goals he wants to achieve:
1. Keep up with his friends when they run across the playground.
2. Pull himself up on the monkey bar (the low one on the playground) and flip himself around it.
3. Learn to pump his arms and legs to swing himself on the swing.

His physical therapist (PT) and he created short-term goals so that he can reach milestones along the way to his long-term goals. The PT wrote them down in Asher's PT notebook on the very front page. Then Asher and I promptly forgot them. On Monday, during his physical therapy session, I was reviewing the notebook and saw the goals. The first one was:

1. Run to the school bus stop (our neighbor's mailbox) without stopping.

So, this morning, as we headed to the school bus stop, I remembered the goal and reminded Asher. After safely looking both ways, he and Simi took off across the street and to the neighbor's mailbox (about 50 feet away). To Asher's surprise, he not only made it without stopping, but he and Simi reached the mailbox at the same time. It was a tie! Now, Asher was probably running full-out and Simi was trotting along, but that didn't matter. I don't think Asher noticed.

Asher was thrilled! He not only made it to the mailbox without stopping, but he and Simi tied arriving there. He was THRILLED!!! I made a big deal out of it.

Then he said, "Thank you"!!!!! I could barely believe my ears.

I gave him a hug and he said, "this is the best hug ever".

Yes, Asher, I couldn't agree more.

Silence

Endoscopies are always difficult on Asher and this last one was no exception. In fact, this last one was probably the most difficult on him. The pain and aches lasted for a full three weeks this time.

Just a couple of days after the endoscopy, I noticed that Asher was limping. He usually walks with a lazy sort of a lope, but now he was in full, serious, limp-mode. The doctor requested a blood test to check for arthritis and other inflammatory ailments. The blood-draw was extraordinarily hard on my little guy. His little body was extraordinarily sensitive and the blood draw just a bit too much at the wrong time.

Then, the Monday morning after the endoscopy (and blood-draw), Asher woke up and had a complete meltdown. To say that this was uncharacteristic of my easy-going, happy-go-lucky son is quite the understatement.

Asher had a meltdown because he didn't want to go to pre-school. He said he hated school. Said that his friends don't play with him. They don't play with him in the sandbox because they are too busy running and playing in higher energy activities. Asher can't play with his friends like they want to play because Asher can't keep up with them. My heart broke.

Just a few days earlier we received an evaluation from the occupational therapist requested by Asher's pre-school. Asher's feelings that he can't keep up with his friends were confirmed by the OT's report that Asher is well behind his schoolmates' capabilities.

All of this news completely devastated me. The worst was, of course, Asher's meltdown. I held him tight for a solid 20 minutes that Monday morning, let him cry it out, and then together we created a plan of action to get him moving in the right direction. It was enough to get him to dry his eyes, get dressed, and manage to get to school. By the next day, we had a physical therapy evaluation, the weekly occupational therapy, and a weekly gymnastics class scheduled. Later, we managed to schedule an appointment with an orthopedist to evaluate Asher's limp.

So here's the deal: Asher's food allergy is the immune system on overdrive. It's not just on overdrive with the food; it's also inflaming his joints and lots of other things in his teeny little body. Hence the limp. And the low energy levels. And the lack of movement.

Asher is working amazingly hard to get his body where it needs to be. He works really hard in OT, PT and gym class. At home, all he wants to do is exercise. He even begs to do the stuff most difficult for him. I suspect that Asher will always have to work hard at everything just to be where everyone else is naturally.

Food wise, we had to remove all the foods in this last trial (whimper!) and we put him back on a low dose of Flovent just to help him get over this post-endoscopy hurdle. This poor kid just can't seem to get a break.

Anyway, now you know the reason for the lack of blog entries. All of this was just a bit too much to handle, let alone write about.

Biopsy Results

The results of both Simi and Asher's endoscopies are back:

Simi is fine: no eosinophils. He does not share Asher's allergy. Phew!

Asher's eosinophilic esophagitis is back with a vengeance. The eosinophil count in the lowest part of his esophagus is as high as 96. Previously, even at its worst, it was less than 25. He is allergic to one of the few foods he is eating.

His doctor is at a conference this week. We will talk with him next week to get a plan of action.

Our Latest Cincinnati Experience

Sometimes I get a chance to watch Extreme Home Makeover on television. Each week, this show reduces me to tears as Ty Pennington and colleagues tear down an unhealthy house and build a dream home in its place for a deserving family. It overwhelms me how gobs of people can come to the aid of one small family and treat them like royalty - with nothing in it for them.

Last Friday, I felt like I was the recipient of something similar. This was the day in which Children's Flight of Hope flew Simi, Asher, and me to Cincinnati so that we could go to Cincinnati Children's Hospital.

As you know from reading this blog, Cincinnati Children's is where Asher goes for treatment of his eosinophilic esophagitis. We have been going there for about a year, after 3 years of repeatedly receiving bad medical advice - advice which was hurting Asher - here locally. It's an expensive and exhausting trip and the medical treatment is expensive and difficult (which, I think, is well understated), but it's been worth it. Since January, since we began with the elemental formula and the food trials, Asher has been healthy for the first time in his life.

Thing is, the protocol calls for an endoscopy after every 3 food trials. The only real way we can know for certain that Asher's allergy is in remission is via endoscopy. And to get the endoscopy, we need to go to Cincinnati. That's a lot of money in flights, hotels and car rentals. It's a lot of time off work since it's a day to get up there, a day there, and a day to return home. It's a lot of stress because I have to carry all of Asher's foods (ya think this kid can find something to eat in a restuaurant? ha!) . I have to get 3 days of foods through airport security - and keep it cold enough to make the trip. Find a hotel with a kitchen. Make sure that the pots and pans have no left-over food residue. Ugh.

Needless to say, it's been 9 foods since we were last in Cincinnati. And if the biopsy shows over 20 eos per hpf, then all of those foods are suspect and we have to take them all out. That will be devastating!

Now I've found Children's Flight of Hope.

On Friday, two pilots flew me, Simi, and Asher to Cincinnati. The SOLE purpose of the trip was to bring the three of us to Cincinnati Children's for their medical care. These two pilots got up before 6 AM and arrived home after 9 PM - they spent their entire day - just to get the boys the medical care they needed. They asked nothing in return. The trip was absolutely amazing. Such an incredible act of selfless kindness like nothing I've ever experienced before. We were treated like royalty.

One added benefit is that the plane-ride made the journey fun for the boys. So the boys came home really enjoying their day in Cincinnati, if you can believe that!

With the help of Children's Flight of Hope, we can follow the protocol exactly. We can make the trips to Cincinnati that Asher needs.

Thank you, Children's Flight of Hope.

Hopefully we'll have the biopsy results tomorrow. I can't wait.

Edible Enemies - Correction

Oops! A correction to the day that the show Edible Enemies will be shown: It is October 19th at 10 AM on the Food Network.

Today Show Article

While we're on the subject of public stories about food allergies, the Today Show recently did a piece on a boy from the UK with eosinophilic enteropathy. It's a poorly researched piece with a lot of incorrect information (shame on you, Today Show!). But a few gems are worth mentioning:

This boy is undergoing the same protocol as Asher. Try a food, wait two weeks for a reaction, try a food, wait another two weeks for a reaction. Undergo an endoscopy after three foods.

In my opinion, the most important stuff came from the public writing into the message board. There is a lot of good stuff written there. If you want to learn a day in the life, it's good to read some of the comments on this message board. One post, in particular, deserves special mention. It's the post on this page, written by Frank S. of Pebble Beach, California.

Eosinophilic diseases are not rare, unfortunately. I wish they were, because then perhaps Asher wouldn't have it. In fact, more children suffer from eosinophilic diseases than cystic fibrosis. Not like I'd want any children to suffer from any of that. My point is that the Today Show was incorrect by calling it "extremely rare". Gosh, they make it sound like this little boy from the UK is the only person in the world suffering from this disease. A brief glance at the message board shows you otherwise.

Edible Enemies

For those who are interested, a TV show on food allergies will be on the Food Network on October 10th October 19. They say that it will be aired at 10 AM ET/PT. Best to TiVo it, just to make sure you don't miss it.

Now, I haven't yet seen it and the little description doesn't sound all that appealing, but the other Eos. moms who watched it on October 13th said it was useful to help people see a day in our lives. Mentioned something about how there is even a can of Neocate in the background of one of the scenes. Asher drinks the Neocate Jr. chocolate flavor, by the way. Welcome to our world, Food Network! Here is the short description, from the food network site:

"Edible Enemies is a one-hour special report that looks at the mysterious increase in both the number and the severity of food allergies in the United States. 12 million Americans now have food allergies. There is no cure. There is no treatment, other than a shot of epinephrine in an emergency. We will hear from the parents of small children, and from teenagers and adults living with life-threatening food allergies."

OK, so there it is. If you watch it and it's a dud, well then, oh well. We'll both be disappointed.

Interestingly enough, eosinophilic esophagitis was first "discovered" around 35 years ago. Then about 7-9 years ago, cases of it just started "exploding" all over the place. There is a certainty that it's not something that just went unreported. Like autism, there is a genetic factor, but then there is an environmental trigger that makes it appear. The question is, what is that environmental trigger that began 7-9 years ago?

No Longer a Baby

Leila is no longer a baby. Seemingly overnight, she turned into a child.

I know, it was bound to happen one day. I just wish I had a bit of warning. Perhaps a bit of transition time. Now she's running after her brothers and talking in full sentences (OK, perhaps 2 or 3 word sentences). She refuses to sit in her highchair and insists on sitting on a proper dining room chair just like her brothers.

Admittedly, we now say that we want to put her in a box and send her away somewhere. She's in the throes of the "terrible twos" where she DEMANDS what she wants WHEN she wants and if someone tries to stop her she SCREAMS. And there is no way to reason with her. ("Leila, it's time to put away the paints and come to the dinner table.")

Yes, we'll get through this phase too. And when that happens, I'll be sad too. Maybe.

A Frog For Asher

Asher's favorite birthday present is a bug habitat. It is a plastic environment that you can put bugs and frogs in and keep them there.

One day, when I reached my office, there was a beautiful tree frog on the keypad of the door to my office. This frog was a particularly beautiful shade of green and had long sticky fingers. I thought to myself that I'd take him home for Asher if he was still there at the end of the day. Sure enough, 5 PM rolled around and the frog hadn't moved from the entry keypad. So I scooped him up, put him in the bug habitat that Asher left in the vehicle and brought him home to Asher.

Needless to say, Asher was thrilled. He was over-the-moon in happiness when he saw the tree frog. It is the first pet that was purely for Asher.

And then I learned just how labor intensive it is to keep a tree frog. They need to eat. They eat live crickets. So you have to go to the pet store on a regular basis and buy live crickets. Then you have to keep the crickets alive. And you have to keep habitats clean. That's a lot of work!

Most importantly, the frog I found was a wild one and belonged back where I found it. So, we took the tree frog on vacation to the beach with us and had a blast sucking up bugs with the bug vacuum (remember that thing we bought after Asher's last endoscopy?) and feeding them to the frog and watching him eat. Then, when we got home, I took Asher to the place I found the frog and we released him together.

I've promised Asher that we'd get him a tadpole and watch him grow into a frog. And he can keep that frog for as long as the frog lives. Hopefully we can feed him frog pellets like the grow-a-frog we inherited from Simi's pre-school class, Sofin. Sofin is MUCH easier to maintain.

Asthma for Asher

A mere day after Asher's birthday, he starts wheezing. Asthma is always worse at night. And it's the worst between the hours of 1 and 3 AM, when you're least likely to head to the emergency room.

So last night, poor Asher is coughing like crazy and there we are with the nebulizer machine, giving the poor kid breathing treatments. And he's complaining of a sore throat, so we're giving him cough medicine (allergen-free cough medicine, of course). Meanwhile, nothing's helping and he's absolutely completely miserable. Needless to say, none of us got any sleep last night.

Now we have a prescription for a year for Pulmicort Respules (I just love that name) in addition to the albuterol treatments, just in case this happens again. Phew!

Good thing we haven't begun a new food trial in awhile.

Our Four Year-Old

Asher is now four. He's thrilled. I think he had a great birthday celebration. On his birthday, he wore his birthday shirt to school and we sang the Beatles' song, "Today is Your Birthday" all the way to school. Then, Raj and I both went to his school at lunch time and sang happy birthday to him and handed out Asher-safe lollipops to him and all his friends. Then, at dinner,
we celebrated some more and he got his birthday present: a frog habitat. And now he has a frog.

Did you know that frogs eat crickets and other live insects? Ick.

Asher's Fourth Birthday

Asher is nearly four. And now we have begun to celebrate.

Our first event was at his paternal grandparent's house. We had a small birthday party, sang happy birthday, and put together the cool puzzle he got as a gift.

Next up was the party at Pump It Up. Asher has been planning this party for about six months now. As you can imagine, this is the party he was the most excited for. He and his friends had a blast playing and running around in these inflatables and sliding down the big slides.

Before his Pump It Up party, we made him a birthday shirt. Both boys loved the idea so much that I think we're going to make this a yearly ritual. We took a plain shirt (actually, it was an old shirt from one of their soccer teams, turned inside out) and decorated it. On one side, it said, "Birthday Boy", "I'm four years old", with all sorts of decorations. On the other side, it said something similar. Both Asher and Simi had a great time while we were making the shirt and Asher loved wearing it.

Leila had to miss Asher's birthday party. Because of the ITP, it was too dangerous for her to be there. With low platelets, her blood won't clot as well as it should. So, if she were to get hit or fall down, particularly on her head, it could have catastrophic results. Thankfully, a great friend offered to baby-sit for her; which we gratefully appreciate. Thank you Charles and Shannon!

We still need to celebrate Asher's birthday at school, then, of course, we need to have a party at home on his actual birthday. Golly, he's going to be worn out by the time his actual birthday comes along!

Leila's First Purse

Every day, walking to and from her room at daycare, Leila insists on carrying her lunch bag. Never mind that the thing is bigger or weighs as much as than she. Mostly, she drags it on the floor behind her as she toddles down the hall.

So today I bought her a purse. It's pink with pictures of pixies (think Tinkerbell) on it. Leila absolutely loves it.

The first item to go into her purse (courtesy of her brothers) were two matchbox cars. Leila carries it on her shoulder, exactly like you should carry a shoulder bag, and she struts her stuff across the room. She's thrilled!

That's my girl!

Tough Week

This has been a tough week in the HinJew household. First issue, of course, is Leila being so sick. The ITP thing is bad enough, but now she's pretty much stopped eating solid foods. It's way too reminiscent of Asher's eating habits pre-ee diagnosis and it has me absolutely terrified. And I can't help but think they're related. I mean, ITP is the body's immune system attacking the platelets. EE is the body's immune system attacking food particles in the body. The body's immune system thinks this food is the enemy, just like it thinks the platelets are the enemy.

Leila's not the only one who has had a tough week. Simi has had a very difficult week in track-out camp. It's really hard seeing your child in difficult situations and it broke my heart watching what he's been going through the first part of this week. He's a trooper, though, and has come through it phenomenally well. He's quite the resilient kid. I'm proud of him. Next week he goes to a different track-out camp. We'll see how things go there.

Asher's feeling ignored with all the commotion around him. Thankfully, he's not suffering any sort of thing! Phew!

Although we're ready for another food trial, we've held off to make sure he's healthy for his birthday celebration. It would really stink to have to miss one's own birthday party due to illness. Plus, we're in the midst of allergy season here and don't want any sort of problem due to environmental allergies messing up the food trials. Best to be patient and wait for the ragweed and grass allergies to wane a bit before introducing another food.

Thankfully, this week is nearly over. Let's hope next week is a better one.

ITP

Leila has ITP. She got it as a result of the MMR vaccine.

The doctor explained that a person normally has about 100,000 platelets in their body. Anything under 40,000 is bad. When we brought Leila into the doctor yesterday, she had 4,000 platelets.

This morning, after treatment, the platelets were up to 18,000.

Simi Update

Simi just completed his first quarter of school. Now he has three weeks of vacation. How cool is that?

Simi is absolutely loving school. He's doing incredibly well. He has math twice a day, which he loves. He also does a lot of reading, writing, and listening comprehension. Every day they have a different special: either gym, art, music, computer, or one other thing which I forget right now. He loves it all.

His reading is amazing. He's reading very fluidly right now. He's on level 16 of books, if that means anything to anyone. He is also working on his writing and doing first grade math. I'm so incredibly grateful that he's in the K/1 combination class and can do the math with the first graders. He is just absolutely loving it.

Simi also just started violin lessons. We just got Simi a little Suzuki violin - it's teeny tiny! Both boys continue to take swim lessons on Saturday mornings.

So now Simi is on vacation for three weeks. We enrolled him in one camp this week and a different one next week - just to see which (or both) he likes the best. There are lots of camp options, so we'll try a bunch and see which he likes the best. I've checked out these camps and they look like a lot of fun. In fact, I'd like to participate!

And that's our latest Simi update.

Baking Powder and Cocoa Powder

Here is an update on Asher's food trials: we've declared baking powder (featherweight) a success and have moved on to the next trial: cocoa powder. Cocoa powder enables Asher to have chocolate cookies and cupcakes. It is also rich in antioxidents which is difficult for him to get elsewhere.

When we first approached Asher with the idea of trialing cocoa powder, Asher absolutely immediately said, "NO!" His eyes got big and he said it in a very serious, absolute way. His reaction took both Raj and me by surprise, until we asked him why he felt that way. He's allergic to chocolate, he said, and it will make him sick. It took a good bit for us to talk him through the idea of trialing cocoa powder to see if he is, indeed, allergic to it. We also explained the difference between cocoa powder and chocolate bars, to which he is definitely allergic (it has milk and soy in it).

So, during nap time, Raj went to work making chocolate cupcakes and chocolate cookies. They're absolutely delicious! Apparently, Asher thinks so too because he ate nearly all the cookies AND several of the cupcakes. Cocoa powder is rocking Asher's world.

Let's cross our fingers and toes on this one. On the allergenic scale, cocoa powder is a wild card. We just have no clue at how Asher's body will respond to it.

Raj has been doing an absolutely amazing job in baking! He is figuring out the mixture of rice flour, millet flour, baking powder, and banana (and now cocoa powder) to make some amazing creations. I know that I couldn't do what he's doing. We're very fortunate!

Cephalexin, Baking Powder, and Crickets

It's been awhile since we've had a food trial update. So here's the latest news:

We stopped the grapes on August 5th. Two days after we stopped the grapes, Asher was back to his old self. I think this change in his personality was further proof that grapes did Asher's body no good.

On August 12th, right at the point where we could trial something else, Asher came down with a fever. Since it was four days after Simi was diagnosed with strep throat, we took him to the pediatrician immediately, who prescribed Cephalexin, an antibiotic. So, we had to trial Cephalexin. Now we know that Asher can tolerate that medication.

Next up was baking powder. But here's where it gets tricky, because now we have to look at the ingredients of the ingredients. Some baking powders contain corn starch. Since Asher is allergic to corn, eating corn starch is bad too. Some baking powders contain aluminum, which have its own issues. So we had to buy special baking powder which contains potato starch instead of corn starch and is aluminum free.

Did I hear you ask, "Why baking powder?" and "How in the world do you trial baking powder?". One word: COOKIES. OK, here's another word: MUFFINS. Raj is doing an amazing job mixing rice flour, millet flour, sugar and baking powder to make cookies, muffins, and fried foods. He fries cauliflower and pork (think chicken nuggets) and all sorts of stuff to give Asher the crunchy salty treats he loves.

If you're wondering why we chose baking powder, Asher's birthday is coming up and we're trying to get enough ingredients for a cake. Or cupcake.

So the other day Asher asks if he could trial crickets. Asher wants to eat crickets. "Sure thing, Asher", I reply, much to Raj's surprise. You can trial crickets if you want. Raj made a batch of just fried dough blobs and we call them crickets. Here are your crickets Asher, we say. Some are small fried dough strings and we call those the cricket legs or cricket antennae. Some are big blobs - and those are the cricket bodies. Other's are small round blobs - those are the cricket heads. Nice and crunchy. It's no surprise that our bug catcher absolutely loves eating crickets.

If you're wondering, all those things: Cephalexin, baking powder, and Asher crickets seem safe to eat.

Reader Asher

Just like his big brother, Asher is reading at age three. Truthfully, he is in the beginning stages of reading - putting the sounds of the letters together to form words. Then, once he has a word completed, he moves onto the next word in the sentence and continues along until he has read the entire sentence. Then we talk about the sentence, so that he understands it. Then he continues along until he's read everything on the page. And we talk about the page. Then, everything on all the pages until he has read the entire book. And then we talk about the book. So, I guess that means he's reading, right?

We have been reading the BOB books, but then a neighbor told us about this amazing Web site. It's free and fun and we all love it. Asher BEGS to read from the Starfall site.


And here's another post where we're talking about Asher and not ee! Gotta love it!

Confession Time

OK, it's confession time: Leila and Asher are Jerry Garcia fans.

To be fair, they're also David Grisman fans. And fans of They Might be Giants. And also fans of Antonio Vivaldi, along with G F Handel. Not to mention anything which even remotely sounds like a song for children. I guess you might say they have eclectic musical tastes.

Our current favorite is "Not for Kids Only", by Jerry Garcia and David Grisman. Leila rocks to "Jenny Jenkins" while Asher's current favorite (and mine too) is "There Ain't No Bugs On Me". We all like "Hot Corn Cold Corn". I can almost envision these two chaps sitting in front of each other, one with a guitar and the other with a mandolin, jamming away. I can even envision it being a regular event. Gosh, what a treat it would have been to be present at one of those events! Raffi who?

So if the next time you see Leila and she has flowers in her hair and singing "Sugar Magnolia", you'll understand why.