TV Time

When Simi was a baby, he used to love watching the Wiggles. He was between the ages of 1 and 2 and he'd watch the television screen in a mesmerized state while watching the four Australian men performing their show. When they sang, Simi would dance/bounce along -- with a great big smile on his face. He loved it.

He also watched Barney. Simi LOVED that purple dinosaur.

Asher was also a HUGE fan of the Wiggles and Barney. At the end of each Barney episode, Barney sings the same song and Asher would come up to me and say, "he's singing our song, mommy!" Then Asher and I would sing the song along with Barney and hug and kiss and cuddle. OK, so I'm a big fan of that dancing purple dinosaur too!

Leila would love to watch the Wiggles and Barney if she got the chance. Thing is, Simi and Asher control the television's remote control. The poor girl is growing up watching Ben 10 Alien Force, Transformers Animated, and Go Diego Go! Rather than learn what foods are the most nutritious or how to treat your friends, Leila runs around the house with her hand shaped like a gun, yelling "bam! bam! bam!" while shooting her brothers and imaginary bad guys - just as she sees her big brothers doing.

I wonder how this will affect her personality...

The Results Are In

The nurse telephoned with the results of Asher's latest endoscopy. Biopsies reveal three eosinophils (eos) per high-powered field (hpf) in the proximal and 15 eos per hpf in the distal esophagus. Results greater than 15 are bad, which means that Asher just barely squeaked by. Since Asher had over 90 eos per hpf in the distal esophagus in his last scope on October 17th, it's encouraging that the number has gone down that significantly. The general consensus is that it takes a long time for the eos to clear from the esophagus.

In other words, it's a pass. We can begin introducing additional foods into Asher's diet. One at a time, of course. One food, wait two weeks for reaction, then another food, wait another two weeks, add a third food, then scope three months from now.

Once Asher stops vomiting, we'll introduce another food. Right now he chooses bananas, but he's allowed to change his mind.

Asher had an absolutely horrendous afternoon and evening yesterday. He vomited up a storm - from 3 PM to about 6 PM. After there was nothing in his tummy left to vomit, he started to dry heave. His tiny little body shook like crazy while it tried to expel something from its empty stomach. I looked on helplessly, trying desperately to think of some way to help my sweet baby.

In a desperate attempt, I took Asher to the pediatrician's last night to see if there could be a virus or bacterial infection or some sort of medicine to sooth his tummy. No dice. Logic says that it's caused by some irritation due to the endoscopy, so it's best handled by the ped. gastroenterologist. Doctor did suggest giving Benedryl (short term) or Zantac (longer term) to sooth the stomach and help with the vomiting. I had never heard of that before. Something about how they are antihistamines, which suppress the histamine allergic reaction. Oh. good to know. So off I went to give Asher some antihistamine. We'll see if it helps.

And While We're Waiting...

While we're waiting for the results of the biopsies, here's a short update of each of the three children:

Simi
Is having a great time in soccer these days. Although he hasn't played it in over two years (and he's six), he's picked it up and is playing like an old pro. Maybe my opinion is skewed, but he seems to be quite the athlete. He is, by far, more advanced in gymnastics than his kindergarten classmates. We should really move him up to the more advanced level - for both his and his classmates sake. I just wish those classes weren't full.

With all the household talk about Asher visiting the hospital for his endoscopy, Simi began talking about when he was in the hospital to have his heart fixed. It's amazing how much he remembers - and the items he remembers - considering that it happened two-and-a-half years ago and that it happened before his fourth birthday. And he remembers it with distinct clarity!

He remembers the nurse removing the Foley the day after his heart surgery - and how it burned and made him feel like he had to pee. And he remembers getting out of bed and trying to pee. After Simi told me that memory, I too, remembered it - just like he did. I guess it left a significant impression on him for him to remember it that distinctly!

He also remembers how terrible the macaroni and cheese tasted in the hospital. It must have been really bad!

I wish I could remember all the other memories he mentioned. Gosh, I wish I had his memory!


Leila
Is our head-strong, super high maintenance child. Good golly, this girl is STUBBORN! She just doesn't quit until she gets what she wants! She is also as sweet as honey - when she wants to be. Here is a conversation we have frequently:

me: "Leila, you are absolutely adorable!"
Leila: "I'm not adorable, Asher's adorable."
me: "You're adorable too, you know."
Leila: "No, I'm not adorable. Simi's adorable." (says with a grin...)


Asher
Has started vomiting regularly after meals since the endoscopy. That's not a good sign. He either vomits - or wants to vomit - while eating every day since the endoscopy. Yesterday I telephoned the GI doctor on call to see if it was endoscopy related. Before I could even get the full sentence out, he tells me that the vomiting is not endoscopy-related (why do they put it on the release sheet then, to call if vomiting?), and that it's probably related to the reason why he was scoped. He asked why Asher was scoped. "He has eosinophilic esophagitis", was my reply. "Oh, well that explains it", says the ped. GI Doctor on call. "That's the reason he's vomiting." Shucks.

So, we're expecting poor biopsy results. Which may explain why Asher is always tired. And has low energy. And poor cognitive skills. Deep, deep, deep sigh.

And Now We Wait...

Asher's endoscopy was today. Because he was added on at the very last minute, the poor kid was the very last patient of the day. And because the gastroenterologist was running about two hours behind, Asher's endoscopy started around 6:00 PM. He hadn't had a thing to eat since 8:45 AM (he's FOUR!) and didn't have a nap and he was an amazing trooper. I've never met a more easy-going kid in my life.

We lucked out on anesthesiologists. We had the same anesthesiologist as we had last year. I recognized him and remembered what a great recovery Asher had from anesthesia. He looked up the records and - sure enough - he was the same guy. So he mixed up the same anesthesia recipe as last time. And the recovery was just as nice. Now we have a perfect anesthesia recipe for Asher - just what every four year-old should have.

Every one knows us at this hospital. I know it sounds rather pathetic, but I find comfort in it. The woman at the information desk - Kathy - lights up and gives us a great big hug when we walk past her desk. Today she gave Asher a beautiful soft stuffed lion. Asher named it "Ligy", and hugged Ligy and held him for the rest of the day. We meant to bring him into the procedure room with us, but he managed to get left behind somehow. Not to worry, Ligy was there when Asher awoke from his anesthesia cocktail.

The OR nurse, Katherine, has been taking care of my kids in the OR for the past six years. We hug, catch up on each other's lives, and when it's our turn, she takes great care of Asher during his endoscopy. I know my baby is safe in her care. I walk into the procedure room with Asher and I hold him and sing to him as he drifts off to sleep. Then I leave the room knowing that Katherine is there to care for him. When the procedure is over, she comes to get me and bring me to his bed so that I can be with him for when he wakes up. I know that my baby is in good hands.

Being the last patient has its advantages. Today, Asher's pediatric GI doctor and I were able to chat for a solid 30 minutes. Any other time of day, he has about two minutes to talk before he rushes off to another patient. It was blissful to get the opportunity to sit in the conference area and and talk with him.

Perhaps you can tell: we didn't go to Cincinnati this time. We tried. Good golly, I can't imagine trying any harder than we have! Truthfully, we've had a really difficult time getting care from them. No matter how much we tried, we weren't able to talk with the doctor after Asher's last horrendous scope to get a plan of action. We struggled to talk to someone - anyone - after Asher lost the use of his arms and legs and I suspected the huge dose of Flovent he prescribed to be the culprit. I was told to go to my pediatrician, even though the ped. gastroenterologist in Cincinnati was the prescribing physician. And six months of struggling to get an endoscopy date has ended up in failure. I can't imagine getting worse care than this. Which led us back to Duke Children's. And like I mentioned, we know the place. We know where to park so that the walk is a mere feet from the entrance instead of blocks away. And it's so close to our house. It's a five minute drive - instead of a two day excursion. Can't beat that. And they know us. Maybe we'll stick with them for awhile.

And now we wait for the biopsy report. It should be back within the week. Stay tuned for the results...

Scheduled Scope

Asher's next scheduled endoscopy is this Thursday. Please think positive thoughts that he'll have an eosinophil-free endoscopy....

One Step Forward, Ten Steps Back

It was approximately six months ago, around the middle of October, when we learned that Asher had some motor skills delays. The Occupational Therapist evaluated him and put his skill level at the age of a 38 month old (he was 49 months old at the time).

We started occupational therapy, physical therapy, gymnastics, swimming, and we worked with him at home. In all, we made sure he had an hour of strenous activity five days a week. We also worked his hands with Theraputty to strengthen his hands/grip/ability to hold a pencil.

On Wednesday, the Occupational Therapist re-evaluated him. The result: his skill level is that of a 39 month old. He is now 54 months old. All that work and it hasn't helped him. Not one single bit.

It reminds me of when Asher was a baby - before we got the EE diagnosis. He wouldn't eat solid food. Actually, he tried to eat solid food, but it hurt so he'd stop. We took him to feeding therapy every week for months. The therapist said he had "x" disorder, he had "y" disorder. I continually said, "I think it hurts him. I think it's something physical." Finally, after many months of this insane feeding therapy, I said, "what Asher has is physical. He won't eat until we fix the pain." That led us to the ee diagnosis, the flovent, and then Asher quickly started eating solid foods.

I can't help but think there's something physical going on now, too, with Asher, to make it hard for his muscles to work. It's hard for him to get out of bed in the morning. It's hard for him to get moving. As much as he wants to do it, he just can't.

It's not lost on me that he's stuck at the 38/39 month old timeframe. That's about how old he was when we started the elemental diet.

I may be wrong; but I remember Asher being quite the athletic little monkey before his third birthday. I have photos of his second and third birthday parties at The Little Gym to prove it. So...what happened around 38 months to cause him to stop progressing?

We're off to find what else is wrong with Asher.

Asher Update

It's been an unusually quiet week...and we haven't had an Asher update in awhile. So...here it is:

I've been struggling to get Asher's next endoscopy scheduled. The protocol is for for him to be "scoped" every three months. Since Asher's last endoscopy was October 17th 2007, we're getting very close to six months post scope now. Unfortunately, my calls and emails to Cincinnati Children's go answered. So much for quality medical care.

Although we're still in the throes of pollen season, I think we have Asher's environmental allergies under control and he's back to feeling fine again. A nebulizer full of Pulmicort Respules (I love that name!), a nose full of Flonaise, and a netti pot to clear out the sinuses have been doing the job for the kid.

We haven't added any additional food into Asher's diet. Instead, we've added vitamins. Asher has been struggling with muscle weakness and shaky hands. The shaky hands - it really looks like the kid has Parkinson-like symptoms, which is pretty scary considering he's a mere 4 years old. It's been scaring the daylights out of me - watching my sweet boy acting clumsy and falling down all the time, unable to go up/down stairs, unable to keep up with his friends on the playground, and unable to hold his cup of milk in the morning because his hands are shaking too hard. Many of the other families with EE children mention that EE and mitochondrial disease are related - and that scares the daylights out of me. Honestly, all of this stuff has overwhelmed me. I just don't know where to turn. I talk with our pediatrician, who also doesn't know. I have been feeling like we're on our own.

So I've been reading. And reading. And while I'm not sure if this is the cause, I've learned that Asher isn't getting the nutrition he needs. He's only getting one-half of the recommended daily allowance of the most needed vitamins, like calcium, vitamin A, zinc, etc. Plus, there are tons of minerals and nutrients that are normally found in food - which aren't found in his elemental formula. I wonder if the lack of sufficient vitamins, minerals, etc. is causing the problems we're seeing in the kid right now. It seems logical to me that if your muscles aren't getting the nutrients they need, then they're just not going to be able to function correctly. Same with the brain.

I found some children's multi-vitamins made of non-allergenic materials and have been giving them to Asher, along with some zinc (to help him think), coenzyme-Q10 (to help with the mitochondrial-like symptoms), Three-lac (to kill the yeast), and calcium (because everybody needs calcium). Interestingly, he seems better after a mere couple of days on the vitamins. He also seems to be doing age-appropriately on the cognitive development work I've been doing with him. Perhaps it's coincidence or perhaps the supplements are actually working, but it's enough to make me want to continue down this path. We're off to find an integrative medicine doctor to help us identify the right course of treatment for this kid.

Two Sides of a Coin

Simi and Asher had their first soccer games this past Saturday. They were both so incredibly excited about it. They had talked about it for days! Saturday finally arrives. When the day begins, it's roughly 60-70 degrees outside and sunny. Simi's game begins at 9 AM. I tell him to dress in shorts and a t-shirt and off he goes with Raj to the field.

As the rest of us are getting ready for Asher's 10:15 AM game, Raj telephones. It's freezing outside. Cold and very windy. Better dress more warmly.

OK, so off we go. We get in the car and drive to the fields. As we start out, drizzle begins to fall. Not a good beginning. As we get closer to the fields, the rain gets harder. By the time we get to the fields, it's a good soaking downpour. I look at the temperature gauge on the car (which is surprisingly reliable); it reads 40 degrees. Cold. Rain. Simi's playing in this weather. Asher, who is newly recovering from his latest asthma/allergy attack, is scheduled to play. Right.

As I tell Asher that he can't play in this weather, he begins to cry. He's so disappointed. He wants to play soccer so badly. I know how badly he wants to play. I'm dissappointed for him. I feel so terrible that for a moment I almost let him out of the car to go play.

The other part of me is thrilled. It's raining. That means the pollen - the thing that's causing Asher to be unable to breathe - is being washed away. It means relief from the asthma attacks. It means more energy for the Asher-boy. So what if he can't play soccer; he'll be able to breathe. We'll find some fun thing to do indoors.

Two sides of a coin. You just can't lose. Or win.

Simi, by the way, did great in his game. He absolutely loved it.

Ode to Spring

Springtime is my absolutely favorite season. I really dislike the cold weather and the short, dark days. Truthfully, any temperature below 70 degrees is too cold for me, so winter really takes a toll on me.

One of the reasons I love spring is because it means that winter is over. Winter really and truly is painful to me. And I love to watch the birds return, build their nests and lay their eggs. I love to watch the flowers popping and the trees getting their leaves. It's a time of rebirth and it's absolutely lovely.

But I don't love it anymore. Because now, to me, it's the season that kicks Asher's asthmatic butt. He gets these dark circles under his eyes, super-congested in his nose, and starts to wheeze. The pollen causes him to struggle in his breathing. So now, the things I used to like about springtime are on the opposite list. And now, instead of reveling in spring, I count the days until the pollen is gone. And I dread the arrival of Autumn, my formerly second favorite season, when we have to go through a similar allergy season.

Maybe winter isn't so bad after all.

Easter in the HinJew Household

It's true: here in the HinJew household, we celebrate Easter. Better said, we celebrate the Easter Bunny and everything that comes with him - coloring eggs, going on egg hunts, and getting Easter baskets. Frankly, I don't see the connection between the Easter Bunny and Christ. For the children, it's a way for them to have fun, do some artwork (coloring eggs), get some exercise (running, searching, and reaching for the eggs during the hunt), have fun with friends (at the neighborhood egg hunt) and get a couple of pressies too. Gotta love that.

We also don't celebrate Easter with food. Nope, none of that chocolate shaped like a rabbit or pink or yellow edible chicks for us. Instead, our Easter baskets are filled with bunny shaped tiddly winks, plastic eggs filled with small toys, bunny temporary tatoos, and straws shaped like Easter bunnies. The children loved them.

'Bout the only complain we heard was when it was over. The children wanted to do it all over again.

Giving Big

I was on the track team when I was in high school. Each year, during Winter Track season, we had an annual fund-raiser for muscular dystrophy. The fund-raiser lasted 24 hours. We arranged ourselves into teams of four people. Each team ran around our winter track for an hour (one person ran a mile, passed the baton to the next person to run a mile, and so on.) Then we rested for three hours until it was our team's turn again. I can't remember exactly how much we raised; my guess is that we raised about $20,000 annually.

This is a mere pittance.

Students at Highland Park High School hold an annual fund-raiser too. They choose an organization which meets the following criteria: 1) the organization must focus on children, 2) have a local connection, and 3) be small enough that the money raised will significantly boost research budgets.

This year, the students chose to raise funds for CURED. Every single penny they raise will go to research on eosinophilic disease.

Unlike my high school track team, these children give BIG. They raised $247,000 for CURED. An anonymous donor has offered to match what they raise, bringing the total to nearly $500,000 for research on eosinophilic disease.

You can read more about their efforts in this first Wall Street Journal article, in this second Wall Street Journal article, and on the CURED Web site. Go ahead and watch the closing ceremony. It's amazing.

Talk about making a difference! To my knowledge, that's the most money EVER spent on eosinophilic research - in TOTAL!

Thank you Highland Park High School students. You are truly inspirational. And a great big thank you to the anonymous donor who, in one swift pen stroke, made a difference in a HUGE way.

As a family who suffers from eosinophilic disease, we're grateful for your fund-raising efforts. You truly have made a difference. Thank you.

The Leila

Now that Leila has gotten those monster tonsils removed, she's a very different child. She's eating like CRAZY! In her entire second year of life, she gained only one or two pounds. Now, just a mere one month post-surgery, she's gained four pounds! The girl just doesn't stop eating now. She's a little fatty! She loves her fat, too. She rubs her little Buddha belly and smiles and jumps up and down to jiggle her little baby fat. Admitedly, it makes us all laugh. I feel like we must have starved her last year when her tonsils got in the way of her eating.

Last night, during bath time, when I told the boys to clean their penises, Leila reached down and tried to clean hers. She looked very confused until I distracted her with some soapy bubbles and a toy.

After the bath, Simi and Asher were playing "super-heroes", which brothers tend to do instead of putting on their pajamas. They had their hooded towels on their heads and used the towel parts as capes and ran around the room and pushed each other. Leila just had to get in the act too. Except she's a lot smaller so she can trip on her towel cape. And get hurt when her big brothers trample her. That didn't matter to her and there she was, Miss Pink Girl, pushing and flying and running with her big brothers.

On St. Patty's Day, Leila dressed in pink, as she does every day. She just loves the color pink. Simi mentioned that Leila would get pinched because she wasn't wearing green. Personally, I pity the fool who tries to pinch that girl! She'd pinch them right back - and scream at them in the process!

That's my girl..

Pink

Leila LOVES the color pink. Perhaps it seems a bit stereotypical, but she's really really into the color. She chooses her clothes these days and she insists on wearing the color pink. She insists on wearing her pink shoes (not her tennis shoes, which are white with pink trim, but her PINK shoes). Although they're not pink, she LOVES her black patent leather shoes. They're very girly. But the pink ones are definitely her favorite.

The other day, while we were in the grocery store, she noticed some yogurt in a pink container. She just HAD to have it. "It's PINK!", she screamed at the top of her lungs in the middle of the grocery store. Didn't matter that she wouldn't want to eat it, she just had to have the yogurt in the pink container.

I think those marketers know what they're doing.

The Tooth Fairy

Simi's loose tooth fell out! It happened at night while we were all sleeping. I learned about it at 5 AM, when I went to check on Asher and Simi woke up to check under his pillow to see what the Tooth Fairy left him. He was VERY disappointed that the Tooth Fairy hadn't shown up yet.

A few weeks ago, Simi had read a book on Sacajawea, the Indian woman who led Lewis and Clark on much of their expedition. Her image (and that of the baby she carried on her back) was imprinted on a gold dollar coin in the year 2000. Somehow, a long time ago, Raj managed to get one of these coins. He also managed to keep track of it all these years. So, when Simi told me about his lost tooth at 5 AM, I woke up Raj and asked for the gold coin.

After the 5 AM check-in, Simi fell back to sleep. Asher was wide awake. He called me in to fix the bed sheet that hangs off the bunk bed between the bed and the closet. That sheet keeps the monsters (who lurk in the closet) from reaching his bed in the middle of the night. With Simi snoring away, I fixed the sheet and tucked the gold coin under Simi's pillow. Perfect.

So there we were, at 6 AM (It's true, NOBODY sleeps at our house!), when Simi woke up, found the gold coin and starting shouting with glee! He was absolutely thrilled that the tooth fairy had left him such a great treasure!

Asher, who was awake when the tooth fairy visited, told us all that. And he said he SAW the tooth fairy. She looked just like a sprite in the Spiderwick Chronicles, with wings that fluttered quickly.

I wonder where we can get more gold coins.

The Flu

It's official: Asher has the flu. He came down with it Thursday night/Friday morning (why do these things ALWAYS happen between the hours of 1 and 3 AM???). He woke us up from a sound sleep to complain about his body hurting him, and when I went to pick him up from his bed, I felt his fever.

I know all the fever-reducing tricks, but this fever just wasn't budging. And on our way to take a warm bath, Asher vomited all over the hallway. It was classic...there he was walking and then all of a sudden he was vomiting. Multiple times. Luckily, the hallway is an easy clean-up.

So, off to the doctor we went and got an official diagnosis of flu, type A. And we all got prescriptions for the Tamiflu.

The doctor told us that, with the Tamiflu, we could expect Asher to be sick for four days instead of seven. OK, I'll take that. So imagine my surprise when Asher awoke this morning fever-free and feeling fine. How did that happen? Aside from a lack of appetite, Asher has been feeling quite fine all morning. I'm impressed.

Which leads me to a related topic: Parents, if your children are sick, PLEASE KEEP THEM HOME! I know Asher got the flu from running around Monkey Joe's and putting his hands in his mouth. Why in the world would anyone bring a child with the flu to Monkey Joe's? I can certainly understand the need to bring a sick child to daycare because bosses sometimes just don't understand that you have to stay home with a young 'un AGAIN when deadlines loom. But, Monkey Joe's??? Mum, if ya just HAVE to have that playdate with your best friend and her child, do it at HOME. Don't make everyone else's child sick too. Thank you.

Loose Tooth

One of Simi's best friends is a girl named Christian. Simi and Christian have known each other since they were three months old. Every chance they get to be together, they're inseparable.

Simi has another best friend named Alex. Whenever Simi and Alex see each other, they run and play and play and play.

Simi also has a lot of friends at his new school.

Christian and Alex - and many of Simi's friends at his new school - have something in common. They have all lost a tooth. They are at that age when their permanent teeth come in.

At school, they make a big deal when a child loses their tooth. The teacher writes their name on the "lost tooth" chart and the child stands in front of the class and shows the class what the tooth fairy has brought them.

Thing is, Simi hasn't yet lost a tooth.

Since the beginning of the school year, Simi has been hoping and begging for a loose tooth. He very much wants to join the "loose tooth" club. He asks quite frequently when he's going to lose a tooth. Every once in awhile, he states that he thinks his tooth is loose, and he points to one of his big molars in the back or some other very stable tooth. And he looks heart-broken each time I tell him that the tooth isn't coming out - just yet.

Until tonight.

Simi runs downstairs after his bath with a great big smile on his face. He thinks one of his teeth are loose! Sure enough, he's right! It's the front tooth on the bottom. Simi is losing his first tooth! He's so excited, he's jumping up and down for joy.

My heart is melting as I watch my baby reach this Very Important Milestone. Slow down, Simi. Don't grow up too fast. Stay my baby for just a little while longer. Please....

I can't wait to see what the Tooth Fairy brings him.

What the ...?!

When talking about the cause of autism, allergies, and asthma, the experts all agree on one thing: there is a genetic component to it and an environmental component to it. If you have the gene (or genes), the environmental cause pulls the trigger, so to speak, for that thing to happen. In eosinophilic esophagitis, they have already identified the gene. They also know that cases of EE have risen SIGNIFICANTLY in the past 8-10 years. They know it's not just an issue of not diagnosing the cases correctly. Researchers have pulled up biopsy slides for the past 30 years and the eosinophils just aren't on them. Now, all of a sudden, it's a problem. The question is, what is the environmental trigger?

Well before Simi was born, the controversy ensued about having thimersol, a mercury derivative, in pediatric vaccines. Thimerosal is known to cause neurological issues in humans. The only reason it's used in vaccines is because it's the cheapest preservative available. But in 2001, the vaccine companies agreed to remove thimerosal from pediatric vaccines. And the pharmaceutical companies are saying, "see, we removed this thing from the vaccines yet the cases of autism, allergies, and asthma are still increasing at astronomical rates. Obviously, it's not the thimerosal in the vaccines that's the cause."

I believed them. I completely believed all the doctors who told me that that horrible thing was removed from the vaccines. And now I learn that it's simply not true. That horrible thing not only still exists in our babies vaccines, but they also inject our babies with the stuff before the infant is even 24 hours old! It's in the Hepatitis B vaccine our infants receive immediately after their born.

Now, who in their right mind thinks it's a good idea to inject our newborn infants with a toxin known to cause neurological issues? And why in the world are we even injecting our babies against Hepatitis B at such a young age? Hepatitis B is contracted via 1) sexual contact, 2) sharing a needle with a person who is Hep B positive, or 3) at birth to a mother who is positive for Hepatitis B. Thing is, all pregnant women are tested for Hep. B - it's required by law. So why not just vaccinate THOSE newborns? Why vaccinate ALL newborns for Hep B? I can promise you that my newborn infant isn't going to be having any sex or sharing any needles for at least a few years. We can truly wait on those shots.

OK, if you want to see just what's in the vaccines your children received, look here. Or shield your eyes if you want to stay blissfully ignorant.

Epoca de Futbol

Spring time means that it's soccer season here in North Carolina. Which makes me wonder...why in the world is it called "soccer"? I mean, what does that word mean? It's called "football" (or futbol in Spanish) everywhere else in the world, so why not call it that? We can differentiate it between "North American football" - that sport that's played using some weird oblong ball and by hitting your opponents as hard as possible - by using exactly those words.


It's been a long time since the boys played futbol and they're really enjoying it. Gotta love a healthy activity...

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!