Simi's Kindergarten Presentation

At Simi's school, each year, each grade level has a presentation for the other students and parents in the auditorium. The Kindergarteners sing songs and each child takes a turn to say one sentence in the microphone.

Simi's presentation was today. It is absolutely adorable. All the children wore the same thing: blue jeans and the same t-shirt. They wore bandannas around their neck and some children wore straw hats. The theme was: "A Day At The Farm". They sang songs like "Old McDonald".

Simi's growing up too fast. When he's with his friends, he doesn't want to pay attention to me. He's only six years old and he's already too busy with his friends. It breaks my heart. Soon, he'll be going off to college and moving away (to an Ivy League school, of course, on full scholarship). Thankfully, I still have Asher and Leila who don't mind hugging me and having me hold them and love on them still.

Bison for Asher?

Asher has been trialing bison for 2 weeks now. And the verdict is.....still out. After he eats it for a number of days, I notice that he is very tired in the mornings and can't get himself out of bed. He is low energy the entire day and, although not irritable, he's definitely not his smiley happy self. This past gymnastics class, he couldn't do any of the things the other children were doing. They were things he had done easily in the past, yet he couldn't do them on that particular day.

The question is: are these symptoms due to the bison or to something entirely different? I mean, I know that sometimes I'm more tired than other times and it's probably not food-related. There are so many variables, it's hard to tell cause and effect sometimes.

Yesterday and today, he's been feeling GREAT. He has high energy, very smiley, doing great on his puzzles and moving quite well. Let's hope he keeps it up.

So, we're going to stop the bison for two weeks and see what happens. If the symptoms stop, it'll be another data point. Then we'll resume bison for another two weeks to see what happens.

Leila Sans Tonsils

It is nearly three weeks post tonsillectomy and adenoidectomy and I'm proud to report that Leila is now nicely recovered. She's doing GREAT!

She's eating, easily, more than her two older brothers combined. Golly, that girl can really chow down! Prior to her tonsillectomy, she barely ate. In fact, she hadn't gained a pound in a full year (and she's only two years old). I suspect she's gained a pound just in the past week with all she's been eating. I have honestly never seen a child eat as much as Leila has been eating this past week or two. Wow!

Leila learned to talk with two large marbles (her tonsils) in her mouth. Once they were removed, she had a very difficult time talking. I couldn't understand a word she said. Now she has to relearn how to talk. She's working on it, but it's still difficult to understand her. I suspect, in time, her speech will improve. Of course we'll give her speech therapy if she needs it.

Even though she's back at daycare and it's the middle of the winter, she is congestion-free. It's the first time ever! And now, just because I wrote this, I suspect she will come down with some incredibly nasty bug!

I'm so glad she had her tonsils removed!

Jump Rope For Heart

Yesterday, Simi and I jumped some rope to benefit the American Heart Association. It was quite the fun event! Sponsors, thank you VERY much for your support. Together, we raised $100 to benefit the American Heart Association.

The event was done during Simi's gym class. The gym teacher had five stations set up within the gym. The stations were: traditional jump rope, hippity hops, individual trampolines, hop scotch pads, and "new-fangled" jump ropes. The children did the activity in each station for five minutes while the teacher played some fun music. The music stopped, then the children stopped, returned the item to its proper location, then did some gross motor skill (skip, roll, crab crawl, etc.) over to the next station. The music played and off they went. In this particular classroom, about five mums showed up to participate (me included) and all of us children and mums got our heart rates up for the half hour class. It was really fun!

Making Pizza

In Asher's gymnastics class, the teacher plays different games with the children to warm them up. One of the games is "making pizza". They sit on the floor with their legs spread apart and they go around the circle taking turns to add ingredients to the pizza. One child will add a make-believe ingredient, then they add it to their pretend pizza which is in front of them, and they mix it up and stir it around -- all the while stretching their arms, legs and torsos to warm up.

Asher's never eaten pizza. It's a concept he doesn't have.

During Asher's turn, he adds things like "chocolate" to his pizza. Some children follow his lead and then add other things, like cotton candy to the pizza. Other children add mushrooms and black olives; they've obviously eaten that kind of pizza. So, when the pizza is all put together, it becomes a very interesting mix of ingredients. Good thing it's all make-believe.

Bison - Day Six

If Asher has a reaction to a food, we usually see it on day five. I hate day five of a food trial. The days leading up to it are nerve-wracking because I tear myself apart with worry that I'm giving my child something which hurts him. On day five, I'm super-sensitive all day, looking for any and all signs of food failure.

Today is day six of the bison food trial. And the verdict is.......the jury is still out. There are some signs of food failure, but the evidence is not enough to pull the food just yet. Sometimes it is very difficult to tell if he is having a food failure.

Yesterday, Asher couldn't wake himself up in the morning. He needed help waking up and getting started in the day. When he's feeling good, he gets up and out of bed by himself. Thing is, Leila kept all of us up the night before, so perhaps he was tired because he didn't get enough sleep.

When he's feeling good, he is a medium to high-energy kid. Yesterday, he was a medium energy kid. He had a lot of fun and worked really hard in gymnastics. If he was having a food failure, he would not be able to work as hard in gymnastics class.

This morning, even with a good nine hours of sleep (with a three hour nap on Wednesday), he couldn't get himself out of bed. Although he needed help getting up, he had medium energy while getting ready.

Have I mentioned how much I hate food trials? I can't begin to tell you just how much I'd like to stop these food trials and just let Asher feel good for a long while. But stopping the food trials means that Asher can only eat four foods and drink his nasty-tasting elemental formula. Either way, it's a mean thing to do to the kid.

Bison

Asher continues to be healthy. I can't believe what I'm about to say: for the first time EVER, all children are HEALTHY! Woo hoo!!!

Asher has had a nine-day stretch of feeling good...well, except for Thursday and Friday when he battled strep throat. But I don't really count that as sick because...it's treatable! Now he's back to feeling great again.

With three healthy children, I'm on cloud nine.

I can't believe that I may possibly, willingly, mess things up now. It's time to try a new food. Asher wants a bit of variety in his diet. Eating the same four foods three times a day, every day, gets a bit boring. But what's a good, safe food? BISON!

Beginning today, Asher and Leila are eating Bison. They both love it. Leila just can't get enough of it; she easily eats more than double what Asher eats. Needless to say, they're very happily enjoying their new food.

I tried to find rabbit, because rabbit is the least allergenic meat. Unfortunately, Whole Foods doesn't have a rabbit supplier who meets their rigorous standards. They tell me it'll take some time to find one. Lamb is next on the bottom of the allergenic list. Thing is, I just can't bring myself to buy that. Thankfully, the chap at Whole Foods talked me out of buying lamb and into buying bison when he told me that people either love or hate lamb and that the taste isn't one children generally like. Which led us to bison.

Which leads me to a different topic:

People who don't eat meat shouldn't cook it. I really have no clue how to cook any of this stuff and I don't taste it to see if it's cooked enough, so I think I overcook things quite a bit. Asher and Leila get rubberized pork burgers all the time. Luckily, they don't seem to mind. And although I'll do ANYTHING for my children, cooking this bison is kinda gross to me. I think it's because the meat is so RED. Or maybe it's the texture. Whatever the reason, I struggle not to lose my lunch while cooking theirs. Thankfully, they really seem to enjoy it and are blissfully ignorant that I have such a difficult time with it.

Let's hope that Bison is good to Asher. And next time we go to the zoo, we can show him what he's been eating.

The Monsters

Asher is four years old. It's the prime age when children are afraid that monsters will come out from under the bed or from inside the closets at night.

When Simi was four and afraid of the monsters, we put a "monster key" on the wall, which wards off monsters. It worked. Simi slept fitfully. The key remains on the wall.

Before Asher felt well, he slept too deeply to care about any monsters. But now that he's feeling fine, he wakes in the middle of the night, scared that the monsters will come out from the side of the bookcase and eat him. The monster key, which helped Simi, doesn't help Asher feel more safe.

So now Asher goes to bed with a sword, so that he can beat off any monster who comes near him.

I'm relieved to have a "common" problem to solve!

Leila's T&A

As Raj mentioned, Leila had her tonsils and adenoids removed. She had her adenoids removed last year, but they grew back. Her tonsils were HUGE. She couldn't breathe and was constantly getting sick. While she was under anesthesia, the ENT also inserted ear tubes since her first pair was such a godsend.

For recuperation period, the ENT prepared us for 7-10 days of absolute misery. Having tonsils removed is quite painful. Then, on day 7, the scabs fall off and the bleeding begins, which could be a problem.

So far, Leila's recovery is congruent with the description. It's painful, so she cries and cries. She says, "hurt hurt hurt" and "ouch ouch ouch" and just cried. I give her tylenol with codeine, which takes the edge off her pain but makes her nauseas. On Saturday and Sunday, she was sick. She laid around like a sack of potatoes - feeling terrible and dry heaving all day Saturday. In the middle of the night (why do these things ALWAYS happen in the middle of the night???) she vomited and vomited and vomited - and spent all day Sunday laying around nearly lifeless. The ENT doctor on call says she must have gotten a virus because vomiting isn't a complication of a tonsilectomy. Luckily, she's over it and we're moving on, happy to be this far past the surgery.

Poor Leila, she learned to talk with HUGE tonsils, which were like having marbles in her mouth. So now that they're gone, she can't talk. She squeeks a lot and makes lots of nasal sounds. I can't understand a word she says. I'm sure she'll adapt in due time.

Jump Rope For Heart

In honor of Heart day/week/month, Simi's school is raising money for the American Heart Association. On February 15th, during gym class, Simi and his classmates will be jumping rope. And since parents are encouraged to jump rope with the children, I'll be joining Simi in jumping rope during his gym time. I can't wait!

Since it's a fund-raiser, we have to raise money. Would you like to donate to a worthy charity (the American Heart Association) and support Simi in his jump-roping efforts? If so, you can do it online by clicking here.

Update: 4 PM: At the link above, go to "Sponsor a Student" and type in Simi's first and last names in the box.

Another Fascinating Article

Here is a fascinating article on eosinophilic esophagitis. Forewarning: It's full of "medical lingo" (don't those medical people know that us non-medical folk read their stuff too?), so plan accordingly.

Leila having her tonsils removed

Leila went in for surgery today to have her tonsils removed. She had her adenoids removed last year at this time, but she was too young to have her tonsils taken out. She's still younger than they would have liked (3 years old is usually the minimum), but they were enough of a problem that the doctor agreed they needed to come out now.

She'll probably be miserable for a week. After that, hopefully, she'll no longer have chronic sinus infections, she'll stop snoring, she'll eat much better, ... generally be much healthier. We're really looking forward to that.

Asher Update

Here is a long overdue Asher update:

Short story: Asher's feeling GREAT!

Long story: grab a cup of your favorite beverage and settle down for a long read...

Asher latest wild ride has FINALLY come to an end. Truthfully, he has been struggling since the last scope. Some days he felt good, followed by days where he could barely get out of bed. Then, the truly bad days set in: where Asher's arms and legs couldn't follow the instructions given to them by his head. The pediatrician described it as a muscular dystrophy type of thing, where Asher's muscles didn't work the way they should. I describe it as horrifying to see my sweet baby struggle to move his legs or keep his eyes open. It was truly frightening.

In addition to the muscle problem, Asher suffered from a severe lack of energy. Getting him out of bed in the morning was quite the ordeal. I'd try to wake him up, then after 20 minutes, I'd pick him up out of bed, like a sack of potatoes, and jiggle him. He'd cry. I'd put his little body on the floor and he'd lay nearly lifeless right where I put him. I pondered dunking him in the cold shower, and would start to tickle and tickle and tickle him. He'd cry some more. In short, it took A LOT of effort and a whole lot of crying on his part to get him out of bed, only to see him with ZERO energy for the entire day. He'd have a three hour nap at school. At the end of the day, Asher would ASK to go to bed early. The minute his head hit the pillow, he would be sound asleep. Then, 12 hours later, I'd struggle to wake up the exhausted boy yet again.

We're not quite sure what caused the exhaustion or the muscular dystrophy. I don't think they were caused by the same thing. I suspect the muscular dystrophy was caused by too much Flovent. The exhaustion, I suspect, is a food failure.

Once we adjusted the medication, Asher's arms and legs started to work again. His exhaustion, however, remained. This is why I think they're caused by two separate things. Question #2 is to try to identify the cause of the exhaustion. During this time, we tried to trial beef. We bought organic beef from Whole Foods. We made beef stew. We made hamburgers. Is the problem a reaction to the beef? Or...is it a reaction to bacon? Bacon was the one remaining food from the failed last round of food trials. And he's been tired since before the last scope. Is bacon the culprit? Are they both bad? Or is it something else entirely? After removing both things, Asher's energy perked up considerably. Now, Asher gets himself out of bed in the morning - before the alarm even goes off. He doesn't have that excess of energy that he did when he was on a purely elemental diet; he's more medium energy now. Heck, medium energy looks mighty wonderful after such a long bout of zero energy days. And if a purely elemental diet will give us a healthy, energetic Asher, then not eating food suddenly doesn't seem so bad.

Truthfully, Asher has only had the past three days of feeling great. We'll just make absolutely no plans to add any new foods or make any medication changes anytime soon. We just need to savor these good days.

Grand Rounds Presentation on EE

Little is known of Asher's disease, Eosinophilic Esophagitis. One of the goals of this blog is to help other families whose children suffer from this disease. Another one of the goals is to help you, dear readers, understand it too.

Here is an amazing presentation given by Asher's doctor at Cincinnati Children's Hospital.

Four noteworthy items:

1. The presentation is 54 minutes long, so budget your time accordingly,
2. you get to see pictures of what it looks like inside the esophagus. You even get to see what it looks like under the microscope.
3. The talk is geared towards a medical audience so for us non-medical folk, some of it may be difficult to understand, and
4. you can see what Asher's doctor looks like. It's totally cool watching him speak.

This link was shared by one of the fellow mums of an EE child. I'm quite thankful to her for sharing the link.

She's Two!

Leila is now two years old. We celebrated by browsing her baby pictures and eating allergen free cupcakes. She got a pink balloon and some ribbons in her hair and she was super-happy.

At first she wanted to put on a pretty dress, but then she changed her mind and stayed in play clothes. That's my girl.

When Simi turned one, we had a BIG party for him - mainly because we were thrilled that he actually made it to his first birthday. We've had a big party for him every year since.

Asher's first birthday was low-key, but from his second birthday on, he's had a big party.

In true third child fashion, Leila's first and second birthdays were low-key. Maybe next year she'll get a big party for her birthday. Or maybe we'll wait a few years.

People Magazine News Story

Gosh, news stories on Eosinophilic Esophagitis are popping out all over the place now! The latest one is in this week's issue of People Magazine. It's a beautiful story of a seven year-old boy named Adam with Eosinophilic Esophagitis. He gets treatment at Children's Hospital of Philadelphia, one of the two national hospitals who specialize in Eosinophilic Diseases. (Asher gets treatment at the other one, Cincinnati Children's Hospital.) Like Asher, Adam is on elemental formula. Unlike Asher, Adam is tube fed, which means that instead of drinking the formula, it goes into a tube straight into his stomach. Adam can eat six foods; Asher currently has four. Interestingly, the foods Adam can eat are poison to Asher.

It's a beautiful article and well written. I was hoping to link to it on-line, but People Magazine doesn't seem to offer an online version.

Asher was thrilled to see a boy JUST LIKE HIM in the magazine. Adam even had a bed JUST LIKE HIM.

If you get a chance, go ahead and read the article. It truly is a beautiful piece.

Check Out This News Story

I've just learned about a news story that Charles Gibson of ABC is doing on EE (Asher's condition). It will air on ABC on Thursday, January 10th at 6:30 PM ET.

I think the focus on the story is on the refusal of insurance companies to pay for treatment. Children with EE (Asher included) can't eat food - food is the enemy. So they have to drink this nasty tasting formula - or get a g-tube and be tube fed. That's bad enough. However, the formula costs about $1200/month and most insurance companies don't cover it. I can relate.

Did I mention that it's a medical necessity to drink/intake this formula? A kid's gotta get nutrition somehow and if food is the enemy, this formula is the only way they can survive (Asher included).

A link to the description on the ABC Web site can be found here.

If you get the chance, watch this program. It's certain to be enlightening.

The Bad Haircut

Simi just got the worst haircut on the planet.

Simi and Asher have been in need of a hair cut for a while now. With all the extra stuff going on during the holidays, I haven't had a chance to make an appointment where I normally take them. Simi's hair is so long, it was in his eyes. So, a few days ago, while Simi and I were out running errands, we found ourselves near one of those "no appointment needed", "walk in and get your hair cut for cheap" places.

"Simi", I said, "Would you like to get your hair cut while we're here?",

"No" Simi replied. "I like it just the way it is."

"Come on, let's get your hair cut. You need it." Into the store we went.

The stylist asked how we wanted it cut. "A trim", I said. "Just keep the same shape but make it a bit shorter." To my horror, she got out the buzz cutter and started shaving Simi's head. As I was watching the "hair stylist" do her thing, I was reminded of all those horrible haircuts I got as a child. I'd ask the hair stylist for a trim and I'd walk out with the shortest hair imaginable. I remember crying and crying and crying after each terrible hair cut. And here I was, inflicting the same sort of punishment on my own child. I cringed with each stroke of her hand.

As I was watching, I kept thinking that perhaps it wouldn't look so bad, that the change in hair styles might be a refreshing one. Wishful thinking, perhaps, but it wasn't meant to be. It really and truly is a crappy haircut. Deep, deep sigh.

I'm pretty sure we won't be going back there.

At least Asher escaped the trauma. I'll make sure to take Asher to our regular hair stylist.

The Little Chef

Asher loves to cook. Not surprisingly, he identifies with Remy, the chef rat, in the movie Ratatouille. He walks around saying, "I'm the little chef. You can call me Remy." To which we sometimes reply, "OK, Remy, go make a pee-pee on the potty before you go off to bed."

Since Asher loves to cook so much, we decided to make some allergen-free cookies and bring them to the local Ronald-McDonald house. There may be some children there who have food allergies and may appreciate having cookies made for them.

So, off we went to make cookies. Asher and Simi both participated. Raj created the recipe. I still can't believe that Raj figured out this simple yet delicious recipe. Rice is the main ingredient: rice flour, rice milk (cooked rice processed and filtered), sugar, potato starch, canola oil, and water. Oh, and a bit of Featherweight (corn-free, aluminum-free) baking powder. Mix it together, drop bits of dough on a baking sheet, stick it in the oven for 18 minutes or so and ...voila, you have some delicious Asher-safe cookies. I sincerely mean it that these cookies are quite delicious!

Once the cookies were made, we put them on a paper plate, covered them with plastic wrap, and went to deliver them to the sick children. Asher was a little sad that we couldn't keep them, but was very excited at the idea of giving them to children who need them more than he does. So, then, off we went.

We didn't get to meet any of the children who were staying at the RMH, but we were still very happy at the idea that they may enjoy the cookies. And we can't wait to do it again sometime soon.

Tea Party

Leila received a tea set from her aunties this year. So of course we had a tea party! Among the invitees were brother Simi, cabbage patch baby, Simi's puppy, Simi's baby sister doll (which we got him before Asher was born to prepare him for Asher's impending arrival), and me.

I poured the tea. Leila drank rice milk in her tea cup and ate potato chips. I drank make-believe tea from my tea cup. Simi drank orange juice from his tea cup and used the saucer as a tiddly wink. Leila fed her milk to the dollies. I cleaned up the mess. Asher joined us for the last bit of tea, then they all got up, threw their tea cups on the floor, and walked away to watch a movie.

I can't wait until the next tea party!