Asher Update

I love to share good news, so here it is: Asher is riding an incredibly great wave right now. He is feeling great. He has tons of energy, is very active, and seems very happy.

Yesterday, I took both boys to Monkey Joes, an indoor playground with lots of inflatable things to climb up, squeeze through, and slide down on. They met a friend there and ran around like crazy for 1.5 hours. Asher kept running from the front of the place to the back. He ran so super-speedy fast that we started calling him "Dash", his favorite character from the movie, The Incredibles.

Asher's naughtiness has also increased, much to Simi's chagrin. Asher really enjoys tormenting his big brother now.

Naughtiness aside, it's wonderful to see Asher feeling so great.

E028 Splash

Asher is undergoing a new food trial: E028 Splash. It, too, is elemental formula but there are many anecdotal stories of children with eosinophilic esophagitis who have reacted to something in it. We cannot assume that Asher can drink this stuff safely.

These "juice boxes" have rocked Asher's world. They add a bit of flavor to his life and make him feel like all the other children - because he, too, can have a juice box. He's thrilled. I'm thrilled to find something which could be safe AND nutritionally complete.

So far, the trial is going exceedingly well. He has been drinking the juice boxes for at least a week with no sign of side effects. In fact, I just ordered a month's supply of grape, since that's the flavor he loves the best.

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!

Twas a Jolly Good Christmas

For me, the best part of Christmas is seeing the children's faces on Christmas morning. The past few years, it's been the same: Simi and Asher run down the stairs and into the living room to look to see if Santa left them presents. The looks on their faces when they see the presents under the tree says it all. Then, Simi runs into the kitchen to see if Santa ate any of the cookies we put out for him (he always does, that Santa) and then immediately runs over to the window to check on the carrots we leave out for the reindeer. Excitedly, Simi jumps up and down that all the carrots are gone too! The reindeer ate them all! This is my favorite part of Christmas.

This Christmas, I barely managed to keep Simi and Asher from ripping open their pressies until Raj had a chance to wake up and join us all... Then, they were quickly into their task at hand...

Without a doubt, Asher's favorite Christmas present is the violin Santa brought, followed closely by the Orange Power Ranger transformer sword (he transforms into a sword AND an orange power ranger!). Asher takes out his violin and plays and plays and plays. It doesn't matter to him at all that he doesn't know how to play it. I'm impressed with how well he holds it and handles the bow.

Simi hasn't shown a distinct attachment to any one present. He loves the LeapFrog Leapster games he received, especially the Spiderman game. Both boys love the Hot Wheels 4-Way Racetrack toy.

Leila was very happy with all her toys. She got really into it and ripped the wrapping off her presents. Nobody seemed to notice that most of her toys were toys given to her brothers in Christmases past. She did get a few new things, like the cabbage patch baby which she seems to love. Her affection to the doll surprised me; she has shown only disdain for dolls in the past.

This year, it was harder to get the children to stop playing with their new toys long enough to sit down for breakfast than it has been in the past. Then, the little ones go upstairs for their nap, then off to visit the grandparents...for more Christmas fun....

Christmas is over way too fast...

The Leila

It's been a LONG time since we've had a Leila update. The hazard of being the third child; I can relate!

Leila's daycare room had their holiday party yesterday. Leila wore one of her favorite holiday dresses - a pink velvet one with fake fur around the wrists and neck with matching pink nappy cover. She was thrilled that she got to wear her white tights and black patent-leather shoes. She loves those shoes. She can barely walk in them (I think they may be a little big for her), but she insists on wearing them to school every single day.

Leila is speaking in full sentences now. She says, "I love you, mommy". She also says, "Eat, Simi!", which is usually screamed out at the top of her lungs. I think she's heard me and Raj say that a few thousand times... She says a whole lot of other things.

Yesterday, she said she wanted a yellow candy cane. I handed her the box and asked her to pick out the yellow one. So she did!

Letters to Santa

The boys wrote their letters to Santa this week-end. You know the letters; the ones with the wish list of toys they want to receive. I need to make a mental note to myself for next year to get them to write their letters to Santa BEFORE I do their Christmas shopping!

Simi can write his own letters now, without any help. For Asher, I wrote the word in dashed lines and he traced them.

The interesting thing about the letters is that Simi asked Santa for items for Asher. He wanted Asher to have a dinosaur.

Later in the day, while they were in the car, Asher asked Simi to ask Santa for a violin for him. He wants it so bad that, even though it's on his own list, he hopes Simi's second request clinches the deal. Too cute. We better get that violin!

Simi wrote a separate note, reminding Santa not to forget the wrapping paper. I'm grateful for that note, because I HAVE forgotten to get some. Doh!

Bravo Simi!

Simi participated in his first violin recital. He did GREAT! I'm so proud of him on how well he did and how much he practiced for his special day.



Most of the students of this violin teacher participated in the recital. It was really neat watching everyone perform at their particular level of skill. And watching the violin teacher interact with each student was also very heartwarming. She's very good with the children.

Asher's so excited; he really wants to play violin. So after the recital, he and Raj went to the violin store to be measured for his own violin (Simi's violin is too big for Asher). So now that he knows what size he is, he knows what to request of Santa (wink).

Asher Update

Every time I begin to write an update on Asher, things change. It makes it very difficult to write an update on him!

We have decided to take a different approach to treating Asher's EE. We have tortured him with the elemental formula and food trials with the idea that if we can identify the foods which cause Asher the allergy, we can avoid those foods. That way, he can stay drug/steroid free and live a healthy life.

Thing is, Asher is allergic to A LOT of foods. So much so that feeding Asher a balanced diet is next to impossible. The elemental formula, which was designed to be a short-term thing, appears to be a permanent thing. I wouldn't wish anyone to drink that yucky tasting stuff on a long-term basis.

Plus, this drinking yucky tasting formula and eating only a few foods takes a HUGE toll psychologically and socially. It's really been H*ll for the kid.

We also know that before we started with all this elemental formula and food trials, Asher was on a very small dose of Flovent and a restricted diet. The diet was still rich in foods and that tiny dose of Flovent was almost enough to clear up his esophagus. Raj and I feel that with an increased dose of Flovent, Asher can have a wide assortment of foods and have a fine quality of life.

And the drugs: we still had to give them to Asher to protect his airway from an asthma attack. So he wasn't able to be drug-free.

So.... if he has to take medication for asthma, we might as well let him swallow the Flovent (vs. using a spacer and inhaling it) so that it can protect his esophagus as well as his lungs. It just seems ridiculous to me to give him a drug which could help his EE and give it to him in a way which doesn't help his EE at all. Like, what's the point of that?

We increased his dose of Flovent and now we're letting him swallow it to help his esophagus. We also had to remove all the foods from this last trial, unfortunately. So, right now Asher is eating only four foods: pork, broccoli, rice, and potato. I'm amazed at how well he's handling the set-back.

I know we have to let his esophagus heal for the next three months, then scope again in March or so. But then I'm not sure what the plan is to introduce additional foods. As soon as I know, I'll post it here.

Asher is feeling a lot better. I'm hesitating because there's something going on which I don't really understand. And truthfully, the only thing I really fear is the stuff I don't understand. So...this scares the sh*t out of me.

Asher's been limping. The limp got worse right after the last scope. The thought is that it's due to his immune system being on overdrive, which is causing the limp. We started giving him the Flovent, and he began feeling better and his limp went away. I breathed a sigh of relief, thinking that the worst was over.

Suddenly, the Sunday after Thanksgiving, the limp returned. I don't understand why, since nothing really had changed, to my knowledge. But there it is, a serious, debilitating limp.

The limp is less now, but it's still there a bit. More importantly: Asher's body definitely doesn't work the way it should. He has a difficult time turning his body and moving it. It takes him a lot of effort to move his body in a way that most people don't even think about. It kills me to watch him struggle like this and I'm not sure what's going on to cause it. Like I said, the thing I fear most is what I don't understand.

So, there it is: a mixed bag. I wish I had something better to report.

More Simi Update

Simi has also begun violin lessons and is preparing for his first violin recital. It will take place this week-end. How exciting!

Simi Update

Simi is in a K/1 combination class, where 9 of the children in the class are in kindergarten and the remaining 10 are in first grade. This is an ideal classroom for Simi and I was thrilled at the thought that he would be in this room for two years - through both kindergarten and first grade.

From day one, Simi has been working with the first graders. So it was no surprise when he brought home his first report card and it showed he was working above grade level in every item. The lowest "grade" he received was a "satisfactory" in music and art classes. I can't remember what he got in Physical Education (gym class); perhaps he got a satisfactory in that too.

About a month ago, I had my first parent-teacher conference with Simi's teacher. Ms. Teacher and I sat down and she began to describe how she tested Simi in his reading and math skills. Her description of the evaluation seemed very logical and thorough and fair. Turns out that Simi is reading on a mid-second grade level (level 24?). He has surpassed all the books in the room, so she had to go to the 2nd grade classes to get some books for him to read. So now, for homework, the kid brings home a 2nd grade level book, along with corresponding questions to answer and reports to write. Right now, my kindergartener is reading about Abraham Lincoln.

Next, Ms. Teacher dropped the bomb: if Simi were to stay in her room next year, it would be a complete review for him. He would be bored and may become a behavioural problem in the classroom. She recommends that he go into a different first grade classroom - of this one particular teacher who takes a project-oriented approach. The school year is divided into quarters. In one quarter, for example, they will look at chicken eggs and watch them hatch and grow. Then everything they do revolves around that project. They'll do reading about chickens and eggs, math about the number of chickens, eggs, etc. And so on. And they do it on their own level.

I asked Ms. Teacher about having him tested so that perhaps he could just go straight into second grade; she didn't recommend that. Simi is slightly built, skinnier than a toothpick, and cries at the slightest thing. She said that as children get older, they get meaner and it would be better emotionally and socially if Simi were to stay in first grade next year.

So, I'm a bit nervous about all of this. I don't like the idea of him "repeating" first grade, particularly since he is already working on a second grade level. I can only imagine how boring it would be for him. On the other hand, staying with his age group is a good thing. Is it possible they could challenge him enough to stay engaged in school?

Then, on Friday, I took him to his first gym class. I signed him up for the Kindergartener class because, well, he's a kindergartener. The next level up is the first-6th grade boy level. After the class, the teacher comes up to me and tells me that he's already ready for the next level. Sigh....

So...if you have any suggestions on what to do for this kid for next year, please let us know.

Happy Chanukah

Chanukah snuck up on the HinJew household this year. Luckily, we realised it was the holiday BEFORE it actually began - phew! We've been lighting the candles and reading the story of Chanukah each night. The boys are crazy about the dreidle game.

Now, if someone could suggest a good way to explain G-d to the children. Good golly, that's a difficult one!

Like the good HinJews we are, the children get one present for Chanukah, and then Santa puts the rest under the Christmas tree. Many years ago, some friends of ours from Boston turned us onto the holiday Hess vehicles. These things are the best toys around; our children just love them. This year, the Hess Monster Truck was the Chanukah present - for all three children. Simi proclaimed it was the best pressie - EVER! Leila had a great big smile on her face as she vroomed her truck around the kitchen. Asher was equally happy playing with his.

Hopefully soon we'll get a chance to buy and decorate the Christmas tree...

Extreme Home Makeover

So much to share with you...so much to say....

The first thing I'd like to share is about tonight's episode of Extreme Home Makeover. Every Sunday, this show has me in tears as I watch hundreds of people come together to create an amazing home for a deserving family. Tonight's episode hit closer to home when Ty and Company built a house for a family whose four children have the same disease as Asher. Good golly, I haven't cried like that in a LONG time!

Here is a link to some information on this episode. Here is an article from the local paper.

Normally, the family goes on vacation while their house is being rebuilt. In this case, the family chose to go to the Children's Hospital of Philadelphia to consult with the specialists there on EE.

Thank you, Extreme Home Makeover. I'm completely humbled by the work you do and how you change people's lives. Thank you.

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.

Feisty Girl

There's no doubt who rules the roost here: Leila. This little half-pint is FEISTY and she makes sure that she gets what she wants. Heaven help you if you try to change her nappy when she doesn't want to be taken away from her brothers or if you try to take a toy away from her. If you make her mad, she'll HIT you!

She's also tremendously funny - especially considering that she's a mere 19 months old. It definitely seems like she's heading into a successful career as a comedienne.

Today we went to the swimming pool. I was shocked when Leila plunged into the cold water, lay on her back and even let her ears get wet (unheard of for a baby her age). And she even did some kicking when I encouraged her to kick.

That's a smart girl!

School of Choice

When I was a child, there was no doubt which school I was going to attend. I went to the public school which was located closest to my house. End of discussion.

Here in North Carolina, we have choices. There is the base school option, which is the school closest to one's house which operates on the traditional calendar year (September to June). Then there are the year-round schools. Those schools have sessions which last for nine weeks, then everyone gets a three week break. Next are the magnet schools. Those are generally schools in "low performing" areas. The magnet schools are generally renovated VERY nicely and pumped full of resources and given a theme to entice folks to send their children to that school. For example, here in Durham, we have a gifted and talented magnet school, an arts and humanities magnet school, one for languages, and several more which I can't think of right now. And then there are the charter schools. They are free for all residents of North Carolina but operate like a private school. And, of course, there are private schools, but students' families have to pay for those.

So last year was the start of the search for the proper elementary school for our children in preparation for Simi's transition to Kindergarten. After a lot of research and attending each school's open house sessions, I narrowed down the choices to five and applied to those. Simi was accepted to the second choice school and wait listed for the first choice school.

As you know, he started the year at the second choice school. It's an excellent school and we all love his teachers, his fellow students, and are very satisfied with the education he's getting there.

And then we get the call from the first choice school: we have a spot there if we're interested. Of course, we have to let them know in 24 hours otherwise they will offer the spot to the next child on the list.

Raj and I went to visit the school. It's absolutely a phenomenal school. It has Spanish instruction, amazing art program, excellent music program, a Montessori approach to learning, and very close to our offices. One of his best friends from pre-school is also in Kindergarten there. Plus, it goes through middle school. Most of the children there are learning two or three grade levels above their age. But, we like where he's at too. So...which do we choose?

This decision is one which will affect all three of our children's elementary and middle school education. It's one which will influence their education, friends and environment for nine years of their lives. It doesn't get more important that this.

Durham public schools generally have a bad reputation. Can it be possible that we would choose a Durham public school over one of the most coveted public schools in the area?

It was an agonizing decision, but we chose to keep Simi at the school he is currently in. While we'll never know the impact of the decision, I just hope we made the right choice.

Asher's Frog

Here in North Carolina, it's been a sweltering 100+ degrees Fahrenheit this week. Today, it's a relatively temperate 94. Asher was extremely disappointed to hear that he couldn't go outside today to look for bugs. Although I suggested he go look for bugs inside the house, he didn't seem to want to do that.

So imagine the surprise when Asher managed to catch a frog in the dining room. It was alive and covered completely in lint (I do clean the house - promise!). It was a good size for a frog, between 2-3 inches. We're still trying to figure out how he managed to get in the house!

Raj speculates that Asher has magical powers and willed the frog to come into the house. Truth is, only Asher could find a frog inside the house.

And here is one post where Asher is mentioned and NOT EE!

Farewell, Moss Randolph

My great-uncle, step-grandfather passed away yesterday. While I've been expecting the news for quite sometime, I was quite unprepared for his actual death. He died alone, much like he's spent his entire life.

Before I knew him, Moss was my grandmother's brother-in-law. He was my grandfather's brother. Except my real grandfather died well before I was born (when my mum was 17) so I never knew him. And since my father's father also died well before I was born, Moss was really the only grandfather I ever knew.

Some 20+ years after the death of his brother, Moss and my grandmother met at some family function and sparks flew. Moss confessed that he had always been in love with her and they started some long-distance courting. Moss lived in Los Angeles, CA while my grandmother lived in New York City. It wasn't too long before they married and my grandmother moved out to Los Angeles to be with Moss. As a young teen, I spent school holidays and summer vacations in Los Angeles with them.

You know, I remember Moss telling me stories of when he grew up, but now I can't remember them. I'd give anything to hear one of those stories again. But one thing I do remember is how much he idolized his big brother, my grandfather, and followed him to McGill University and became an engineer. See, they grew up in Canada. He found his way down to the United States and took a job here, took a job there - more interested in the adventure than in settling down and starting a family. He spent some time in Mexico. Then he spent some time in southwest US before settling down in sunny California. Even after he married my grandmother, he would take her on adventures. They went to live in Chile for awhile and traveled to lots of other places. I think he and I are a lot alike.

I loved to listen to his stories. Sometimes, he'd tell me the same story over and over again. It's been so long since I've heard him tell me a story that I can barely remember them. I'd give anything to hear one of his stories again.

When I was a kid and would visit him in Los Angeles, he and I would go for a run every day. Then, after dinner, we'd go play billiards in the apartment building where he and my grandmother lived. One day he came home after stopping at the public library. He had a bunch of books on how to play pool. He poured over those books in his typical engineer-style. I wasn't interested in reading about angles or strategy. He got to be a really good pool player; I still stink at the game.

The 1984 Olympics were in Los Angeles. I managed to get some tickets and Moss and I went to see Mary Decker, my idol, run. Actually, we saw her fall, but that's a different story for another time. We watched the men's steeplechase and a lot of other events. I'll never forget that day. We asked a stranger to take our photo. I still treasure that photo.

Another time, after he and my grandmother retired and moved to Florida, I visited them there. I had a watch where you could enter some metrics and it would calculate the distance you ran. In his true engineer style, he measured my stride by measuring distance ran by number of strides between two light posts so that we could enter the accurate stride length into the watch. His calculation was perfect.

Then, my grandmother got sick. She was dying. He was the one who took care of her. He did everything for her. He got one hour off each day when a nurse came in to watch over her while he took a break. He never complained. He just stayed there with her until the very end. I was in graduate school at the time.

A year later, I flew down to Florida to visit him during the one year anniversary of my grandmother's death. Her clothes and stuff were just where she left them. It almost seemed like she was going to walk in the door any minute. I helped him get rid of her stuff. I bawled my eyes out but he didn't cry at all. He loved her more than anything, but to him, it was just stuff. And he didn't really have much emotional attachment to stuff.

I loved our time together. Moss came to visit me once when I lived in Takoma Park, MD. I remember eating turkey burgers on our screened in back porch and he was telling me and my roommates stories. They were mesmerized by his stories and would ask questions. He'd tell story after story. After he left, my roommates begged for him to come back to visit.

He came to visit me one year at the farm I lived on in Durham, NC. I remember him washing my truck. He had a particular brand of soap he loved to use and a particular cloth - just perfect for washing cars. He did a great job on my truck - better than I had ever done.

At the farm, we sat on my front porch and watched the cows in the field. He was an old man by then and we no longer ran together. Instead, I'd go for a run and he'd wait for me to come back. He met my friends; they'd always ask me when he was returning for a visit. Everyone loved Moss. I'd ask him why he never married before he married my grandmother. He'd shrug his shoulders and not say much. I guess he was too much of a free spirit to really settle down much. Everyone loved him, but he spent a lot of time alone.

One time he came to visit me right after I bought my first house. He helped me prune the trees in the yard. He picked up the pitch fork and said he wanted to turn the soil so that I could have a garden. " Tarheel soil is clay, Moss.", I said. "It's hard to turn. You're going to hurt yourself." But he insisted. "OK. I'm going to go for a run, then", I said. "I'll be back after a few miles. " He picked up the pitch fork and stuck it in the ground. I trotted across the street to begin my run. I didn't get even 1/4 mile before I turned around, terrified that he was going to hurt himself while turning the soil. When I returned, he looked relieved. I asked him if he wanted a glass of ice tea. He put down the pitch fork and gratefully followed me inside the house for a glass of cold ice tea. We never talked about the garden again.

About a year after that visit, he suffered a stroke and he never recovered. I wanted him to come live with me, but my uncle insisted he stay in a nursing home in Connecticut near my uncle. I'm grateful to my uncle because I probably wouldn't have met the man I married, nor would I have had my three wonderful children if I had to take care of Moss after his stroke. However, having Moss in such a horrible place was painful. It was a horrible place - the kind of place where one can easily lose their mind. It pained me just to think of him there. Here was a man so full of life stuck in a place so full of insanity. Just that thought made me crazy. He deserved so much better.

He couldn't make it to my wedding. And he never met my daughter. I wanted so badly to name one of my children after him, but couldn't. And now he's dead and all I have are these fading memories.

Goodbye, sweet Moss. I love you more than anything. If there is a heaven, you, more than anyone deserve to be there. I miss you.

Post Grapes

OK, we pulled grapes out of Asher's diet and now he's like a different kid. It's like someone flipped a switch and we got a new Asher. He's happier, goofier, and more energetic. He isn't so hard to get out of bed in the morning.

I guess it was the right thing to do.

End of the grapes (for now)

On day 10 of the grape trial, we finally pulled the plug on the grapes. Asher's tummy ache, which began as soon as he started eating grapes, never went away and his food intake has taken a nose dive. Thing is, when Asher has a reaction to a food, it's different from this reaction, so we're not convinced that this is a food failure. At any rate, we did decide to remove it from Asher's diet.

As soon as we made the decision, Asher began to ask for grape juice. Then he said that his tummy ache disappeared. He's really sad that he can't have grapes or grape juice for awhile. Truthfully, so am I.

Today I went to Whole Foods to get some things for Asher. While there, I was looking around at the breads and cheeses and cakes and pastries and I just started to cry. I literally burst into tears while looking at the cheeses. Here was this huge store fool of delicious food and Asher will never get to eat any of it. It made me really sad for him. So, there I was, bawling my eyes out and I walked over to the check-out counter, saw a really nice nutcracker on-sale for half price and I bought it - all the while thinking, "this is a really wasteful purchase; when are we ever going to be cracking nuts in this house?" Which got me even more sad and crying more. So, then it was my turn to check out and I looked up at the cashier, who was of Indian descent and on her name tag was the name, "Laila". Good golly, a woman of Indian descent with a Hebrew name? What a coincidence! So, we talked for a bit, all the while I had tears in my eyes and the cashier didn't say a word about my tears. And then I come home to a tearful Asher who wants to drink grape juice but can't.

Tiddley Toddler

Leila wants to do EVERYTHING her big brothers do. She follows them everywhere, even when they're in time-out, she toddlers over to them and plays with them. So it's not surprising that when she sees them pee in the potty, she wants to do the same thing. So one day I said, "OK, Leila, do you want to make a pee-pee in the potty too?" Leila responded with a "pee-pee too", and proceeded to pull off her nappy, walk over to the toilet, and stand in front of it just like her big brothers.

So we pulled out the plastic potty and now she knows to sit on it, although she doesn't know that she's supposed to do something other than sit while she's there. But, heck, she's only 18 months old. She'll figure it out in due time.

Grapes, Day Eight

By now you would think we'd have an idea of how well grapes are treating Asher. Truthfully, the jury is still out. It's probably okay, but this food trial has not been the "slam dunk" that the other trials have been. We'll give it another week and see how it goes.

My last blog entry, on day four of the grape trial, Asher had a really bad stomach ache and gastrointestinal distress. Raj rightly pointed out that grapes are quite acidic and Asher hasn't had something like that in his system for a very long time. Raj had tried to prepare me for potential gastrointestinal distress with the bacon trial - something that could cause a shock to Asher's system but wasn't an allergic reaction. However, with bacon, that reaction didn't happen (and the kid eats A LOT of bacon!). Perhaps grapes are just a shock to Asher's adorable little body and that it's not an allergic reaction. We'll give it another week.

Asher hasn't eaten any grapes in two days. In fact, today he ate very little. Yes, it's quite concerning. But he doesn't have some of the other symptoms of ee - tiredness, achyness, queasy stomach, vomiting. So, we'll see. And that's why the jury is still out.

Grapes, Day Four

I recently bought a new book in order to better understand these food allergies. In it, the author writes about how children are specifically susceptible to certain groups of foods. For example, her son had lots of physical symptoms when eating meat, specifically beef and pork.

I wonder if Asher may have difficulties with fruit.

On Thursday night and Friday, Asher gobbled down grapes like crazy. He just couldn't get enough of them. Saturday, he said they were yucky and wouldn't touch them. Yucky? Is that a three-year old way of saying that he doesn't feel well when he eats them? Because they certainly aren't yucky in the true sense of the word.

Sunday, today, we went to Whole Foods and bought some pure grape juice. He drank it down happily. Then, about a half-hour later, he complained of a tummy ache, doubled over on the floor in pain, and spent the next few hours on the toilet with gastric distress. Yes, that's yucky.

Millet and Grapes

Asher is making these food trials seem easy. We've declared millet a success.

Asher chose grapes for his next food trial and he started eating them tonight. Both boys gobbled up a lot of grapes before bedtime.

Beginning a food trial always makes me nervous. Before we started on this food trialing journey, we knew that there was something in Asher's diet to which he was allergic. We just didn't know what it was. So every time we add a new food back, I wonder, is this the food? And with each food trial success, I breathe a sigh of relief, but then the list of potential foods which caused the reaction gets narrower. It makes me wonder when we will hit the allergen. Hopefully it won't be grapes.

School Bus Ride

On Friday, Simi rode the bus to school. He loved it and enjoyed the ride. I managed not to cry as I walked off the bus and left him there. It sounds like he did great, too. He said that when he got off the bus, he walked into the school but felt lost (I think they enter the school from a different location when getting off the school bus), so he asked a teacher. The teacher guided him the right way. Phew!

Simi was enjoying his time in after-school care when I arrived to pick him up. He wanted to stay for a bit to play on the playground and excitedly showed me what he earned from the treasure box for not having his fish moved this week (your fish gets moved if you behave poorly).

I think we're all getting the hang of this elementary school thing.

Kindergarten - Day One

Wednesday was Simi's first day of kindergarten. We didn't let him ride the school bus. Instead, I drove him to school and walked him to his classroom, with video camera in hand. We joined the many other parents and grand-parents who were walking their own first-day kindergarteners to their classrooms with their video cameras in hand.

Simi knew the way to his classroom - found it with no problem. His teacher was at the door with a big smile on her face, greeting all the new students and their parents. Simi found his desk, met the only new child he hasn't yet met, but was more engrossed in the two pieces of paper lying on the desk. One was a connect the dots (a-z-A-Z) and the other was a "find the hidden words in the big block of letters on the page". Both of these things are some of Simi's favourite things to do and he was thrilled. In fact, he was so engrossed in the work that he barely even said good-bye to me. I don't think he even looked at me as I said good-bye and just kinda waved me away. OK then.

So, I walked back toward the door, said good-bye to his teacher, and just started bawling my eyes out. I was totally unprepared for the wave of emotion that hit so hard. Simi didn't see; he was still too engrossed in his work. The teacher gave me a big hug and suggested I stay as long as I want, but I left. Simi was fine and it was better that he didn't see me crying.

All of us went to pick him up at the end of the day. Simi was in after-school care. He was in the art room with his fellow kindergarteners and first-graders doing an art project. It seemed like good care and he seemed to be having a good time. And then, instead of going to swim class, we all came home, had dinner together and had a low-key evening. He told us all about his first day and admitted that he, too, was a little scared. Phew, he's normal!

Simi really wants to ride the school bus. Raj says, "OK, you can ride the school bus. And I'll be driving behind it." I think he's not kidding. We both tell Simi that he needs to be able to carry his own book bag, and until that happens, we'll be driving him to school. So, we'll see when he actually does ride the school bus.

School Open House

Simi's new school held an open house so that Simi can meet his new teachers and fellow students. Simi was absolutely thrilled. I wish I captured the look on his face when he walked toward the building and then into it - he had a huge smile and a spring in his step. He's so ready to take this next step.

All of us love his new teachers. Simi formed an instant friendship with a boy in his same "desk grouping". They hugged each other and ran around exploring the room together. Then we walked down the hall to show the two new friends the location of the library, cafeteria, office, and how to get to his room from the front door.

We returned from the open house just in time for Simi's graduation from pre-school. They wore paper motarboards - complete with tassels on them - and received a diploma and a present (a photo of the children who graduated with him - and they signed their names on the wooden frame. It's absolutely beautiful!).

Simi is officially done with pre-school and is moving on to elementary school. I just wish his parents were as ready for this transition as Simi!

Cauliflower and Millet

Oh, and by the way, we're declaring cauliflower a success and have moved on to millet. Millet is a low-allergenic grain which is a good source of iron and potentially a flour we can use in baking.

Swimming Fun

We have been having a manic summer - going from work to swim lessons four evenings a week for the boys. Raj and I got our satisfaction when we saw Simi swimming the width of the pool on his own. What a beautiful sight!

Asher is doing great in his own swim class. He's putting his head under the water regularly now and blowing bubbles in the water and jumping in. They're both loving it.

And we're loving watching them progress with their new skills...

Kindergartener Simi

Simi is starting a new phase in his life. He is leaving pre-school and all the friends he has had for his entire life and starting elementary school. Simi is going to Kindergarten.

Simi couldn't be more ready. He's so incredibly excited to go.

He got his kindergarten medical check-up and vaccines. He got his "ready for school" haircut. He chose some new school clothes. He rode the school bus for practice and learned all about school bus safety. On Friday, he gets to meet his new teacher and his fellow students.

It doesn't even matter to him that he's going somewhere completely new where he knows no one. He's ready. He's so incredibly excited and thrilled.

Simi was chosen for the K/1 combination class. That means that 10 of the students in the class are in kindergarten and the remaining 10 are in 1st grade. They stay in that class for two years. Simi and I had already met and spoke with his new head teacher and we both really like her a lot. I don't think we've met the assistant teacher; we'll meet her on Friday.

Simi is going to a year-round school. He goes to school for nine weeks, then he gets three weeks of vacation. He's used to going to school year-round, and the three week break seems humane to us. It gives us a chance to take family vacations throughout the year (not just once during the summer). We all like that.

And now Simi starts school on July 18th!

Bacon, Cauliflower, and T-ball

With Day Five of the bacon trial safely behind us, and since bacon is so closely related to pork, we decided to take the risk and move forward swiftly with the food trials. We added one of Asher's favorites: cauliflower. Beginning yesterday, Asher has begun to eat one of his favorite dishes: cauliflower and potatoes. Cauliflower is high on the food allergy scale, so I'm a bit nervous.

If he passes the cauliflower food trial, his diet will be very close to what it was before we started this process. Let's hope that apple is the only thing we need to remove from his diet....

Yesterday, we had our second t-ball practice. Raj and I were a little more prepared this time. I had done some Web surfing and found some great information to guide us through coaching t-ball. Raj and I shared the information, talked about a few things, then implemented all this stuff on the field. Some of it worked, some needs tweaking, but we're getting better at this coaching thing. But the most important thing is that the children seemed to have a good time and to be learning how to play t-ball. Phew!

One of the most rewarding moments on Asher's team was with a three-year old named Olivia. This was Olivia's second practice and she couldn't have been more terrified. She arrived sucking on three fingers, her arms wrapped around her and her head down. As her mum pushed her toward the crowd of pre-schoolers, tears dropped from her eyes.

Our first drill was to run around the bases. Since I was the only coach for the team, I asked one of the parents to help. The parent lead the team around the bases while I brought up the rear. There was Olivia, trying desperately to make her way back to her mum. I gently took her arm and with a gentle bit of persuasion, I coaxed her to run the bases with me. And that's how we began the practice.

With each drill, I had to gently coax Olivia further and further. At the end of the practice, I actually saw a smile on Olivia's face; she was enjoying herself! And she even joined the rest of the team as we put our hands together, raised them up and cheered "White Tigers!"

One of the negatives of coaching is that I'm so wrapped up in working with all the children that I don't get to see Asher play. I saw him hit the ball off the tee once, and he can run the bases really well, but that's all I managed to see.

I look forward to next week's t-ball session.

We Interrupt This Blog Post With An Important Announcement....

Today is Day 5 of the bacon trial. You know what Day 5 means. In other words, today is the dreaded Day 5. Day 5 always worries me. If we can make it through Day 5, then I think we're in a good place. All days leading up to Day 5 make me nervous. They give me a sinking feeling in the pit of my stomach. I think, am I going to feed my child something which will make him sick? And when he gets sick, he gets really sick. Am I really going to do this to my child?

But here it is, Day 5 of the bacon trial. The day I've been dreading ... and it's here.

Asher's pre-school teacher tells us that Asher is the envy of the school. They heat up his bacon before they serve it to him and the smell wafts through the entire lunch room. All the children perk up and ask for bacon. The teachers want bacon too. Asher gets to be the envy of everyone in the cafeteria. I bet they'll be thrilled when he starts eating cauliflower.

Now it's the end of Day 5. Day 5 is nearly behind us and we've seen no negative side effects.

Soon it will be Day 6 and a feeling of being on the other side of Day 5...and I can begin to breathe a sigh of relief.....