Post Endoscopy

Asher isn't feeling well. He's whiny and barely eating. Everything bothers him and he is complaining about aches and pains everywhere. I remember him being similar to this after the last endoscopy too and being very nervous about it. This just isn't Asher.

In the meantime, bananas have been added to Asher's diet. Several weeks ago, Asher begged me to have a banana. Now, he's really more excited about the idea of eating a banana rather than actually eating them. He has been eating them, just not with the gusto that you would expect. Truthfully, he's not eating much of anything right now. He just doesn't feel well.

We've made him banana ice cream (put a frozen banana in a food processor until it becomes the consistency of soft ice-cream. It's really delicious!), dehydrated bananas, fried bananas, and, of course, plain banana.

Meanwhile, Asher is having a blast with the bug vacuum. He's forgotten all about using it as a gun and instead is completely obsessed with using it for its intended purpose: to suck up bugs. We've captured all sorts of bugs - baby grasshoppers, ants, roley poleys, june bugs - to name a few. We even made a habitat for the roley poleys and have kept them on the kitchen table. They're fun to watch.

Asher even took the bug vacuum to school with him for show and tell. He was so excited about it and showed it to his teachers who both looked at each other, looked at me and said in unison, "we're really glad you have a daughter too." Knowling Leila, though, she'll probably be just as into bugs and bug vacuums as are the boys.

Meanwhile, we await the results of the endoscopy.

Endoscopy Is Over

Asher got through the endoscopy and we're now home and doing well. Gosh, I hate the endoscopies. I truly don't know what is worse - being forced to drink icky formula or having to undergo the endoscopies. The endoscopies are really hard on Asher.

Since he wasn't allowed to drink anything after 4 AM, I had planned to wake him up before 4 am to drink some formula. Turns out, Asher awoke at 3 AM because he had a rash on his tummy which hurt him enough to wake him up. Applying calamine lotion only hurt worse and Asher was screaming at the top of his lungs. If anyone knows why that would hurt, please clue me in! Anyway, we got through that, had some formula and went back to bed.

The endoscopy was scheduled for 12:15 PM, but it was started earlier. Asher did great and the visual inspection looked good. Dr. Ulshen was quick to tell me that in 30% of the cases, the visual inspection isn't enough and we need to await the biopsy results. The results should be available in about a week. So now we wait. But at least the hard part is over.

Asher did just great in the endoscopy. He walked with me to the operating room, let me pick him up and put him on the table, then put the mask on his face and breathed in the gas. The hard part was coming out of the anesthesia. It's REALLY hard on him and he was crying and in pain. They called me back to the recovery room and when I looked at him, he was all curled up in a ball and he looked so teeny tiny. He was still sleeping and it took a really long time for him to awaken. Then, once he woke up, he started crying, which got me crying. There we were, both of us bawling like babies. We sat like that on his gurney for about 45 minutes or so until the nurse insisted that he get dressed and leave. OK then, we're on our way.

I promised to buy him a toy, so off we went to Target in search of a toy. It took awhile to agree on the toy. My criteria was that it not be a gun. He ONLY wanted a gun. He ended up choosing a bug vacuum, because it LOOKS like a gun. At least it can't shoot things at people.

By the middle of our shopping trip, Asher started feeling better. He's still woozy and walking wobbly, but he's definitely on his way to recovery. I wish these endoscopies weren't so hard.

Next food trial? Bananas. We need a fruit.

Rice and Potatoes

It's been awhile since we've given an update. We were at the beach. But that's another story for a different blog entry. Right now, I want to tell you how Asher's doing in his food trials.

After two weeks of eating rice, Raj and I breathed a sigh of relief and moved on to potatoes. Honestly, I thought that it was certain that Asher would fail the rice trial, so I'm absolutely thrilled that things have gone as well as they're going. I'm afraid to get my hopes up by thinking that perhaps we can actually, one day, feed this kid.

Asher has been eating potatoes for about one and a half weeks - well past the dreaded 5th day.

It's wonderful that Asher has been eating food. He only drinks about 4-6 oz of formula now with his meal - of food. It's just great. Raj has been cooking him "pork fried rice" - with pork and rice and broccoli all fried up together. Asher just loves it. He is REALLY enjoying his potato chips. Golly, adding rice and potato have done GREAT things for his outlook. It's been wonderful.

The protocol is to trial 3 foods, then perform an endoscopy to check for allergic reaction. Some children show no outward symptoms yet an endoscopy will reveal eosinophils in the esophagus upon biopsy. So the endoscopy is an important step. We're scheduled for an endoscopy tomorrow.

Truthfully, I hate endoscopies. They're so hard on Asher and the risk of complications, although small, is frightening. I'll breathe a BIG sigh of relief after the endoscopy when all goes well. And when we have the results - in about a week - I'll be sure to post them.

Rice - Day Five

Asher has been eating rice for five days now. Today is the dreaded day five on the rice trial.

I hate day five. It's always on day five that we see a food failure.

Days one and two are the honeymoon phase. It is when Asher is really enjoying his new food, happily eating away. Beginning around day three, I look at Asher and he seems so healthy, so energetic and happy and, well, healthy, so I think we're doing well. Then around day four, he's still doing great - very healthy and energetic and it feels like we're in the home stretch - just rounding the bend and heading for the finish line. Then, along comes day five and - bam! - Asher becomes sick as a dawg. I hate day five. It's really tough to see your child become so sick. It's even tougher when I realise that I caused it by allowing my child to eat something to which he is allergic. That's day five.

Today is day five on the rice trial. The dreaded day five. I've been worried about this day - concerned about how sick Asher is going to feel after eating rice for five days. He's been eating A LOT of rice!

Here it is, the end of day five, and Asher's still acting healthy and happy and not complaining or feeling sick.

All food trials last two weeks, so we still have a way to go before the end of the rice trial. But it's nice to know that day five is behind us.

Blueberries: A False Start

I know it's quick, but the verdict is in for the blueberry trial: Asher doesn't like them. I think they're too tart for him. It's early in the season and difficult to get good, juicy, sweet ones. So he doesn't want to eat his blueberries.

He is, however, chowing down like never before on his pork and broccoli. That's a good sign that he's feeling well.

We're not going to force him to eat something he doesn't like, so the blueberries are shelved for now.

Next up: rice. Asher thoroughly enjoyed eating a rice cake last night.

Broccoli, Augmentin, and Blueberries

We have officially declared broccoli and Augmentin as food trial successes. Phew! We really needed to see a success. Aside from a small bit of " whole-body" tiredness, Asher is feeling pretty good these days. So, we're moving on.

Asher has chosen blueberries to be the next food to add into his diet. Off to the store we went to purchase some blueberries (gasp - do you know how much these tiny little things cost?) and he had them for his dessert last night. And he's absolutely thrilled to learn that now he can drink a little bit less of his milk.

Swimingly Simi

When Simi was three, he began swim lessons. We took one five-week session of parent-tot classes, then put him in the group lessons. Then, we got permission to do another five-week session of parent-tot lessons because he was too small for the group lesson. He did absolutely fantastic in the parent-tot class and was close to swimming when we stopped to get his heart fixed. After we got his heart fixed, we focused on other activities, such as soccer and t-ball. Swimming took a back seat to all the other activities.

Seven weeks ago, we enrolled the boys in swim lessons again.

On Saturday, during the lesson, Simi swam about 10 feet all by himself. He did it! He swam by himself!

Augmentin - Day Five

Today marks the fifth day that Asher has been taking Augmentin. It's the dreaded day five. Keep your fingers crossed. Cross those toes too - we need all the superstitious luck we can get. After all, it's day five. Is Asher allergic to Augmentin or is it safe for our little guy? Stay tuned....

Sinus Infection for Asher

After another trip to the pediatrician's office, we have a prognosis for Asher's latest illness: sinus infection. And we have another prescription so that he can kick the infection: Augmentin.

Now we get to see if Asher's allergic to Augmentin.

The Doctor suggested we get Asher some probiotic while he's on the antibiotic. I explained that I couldn't find one that didn't dairy or wheat in it. Asher's allergic to both of those things. Deep sigh....

Stay tuned for the next installment of "how to make Asher sick to his stomach".....

Asher's Sick - Again

For the third time in less than six weeks, Asher is really sick. He is coughing so violently that he can't keep anything down. He just coughs so violently that he vomits up anything that he eats/drinks. We're giving him cough medicine, breathing treatments, and Flovent to ease his pain. I think it's helping a little bit, but the kid hasn't kept any fluids or calories in his tiny little body at all yesterday. Jeez.

At first, I thought he was having an asthma attack because the weather dropped 30 degrees overnight. I thought the temperature triggered it. It's also not lost on me that it happened on day five of the broccoli trial. If we're going to see a reaction, it happens on day five. Honestly, I hate day five. It's just enough time when you think that everything is going all right and then, bam! something bad happens.

Is it asthma? Is it broccoli? Is it ___ fill in the blank here? Who knows. I just know this kid is really sick.

Sweet Potatoes and Broccoli

Here is an update on Asher's food trials:

Looking back, I realise that I forgot to mention the sweet potato trial.

After the dismal failure of the apple trial, we had to wait until Asher was feeling better. Then we added sweet potatoes into Asher's diet. First, we gave him baked sweet potatoes. He didn't like them. So then we sliced them and made French-fry type sweet potatoes. We made fried sweet potato balls. We learned to make a lot of different things with sweet potatoes.

The verdict? Asher simply doesn't like sweet potatoes. He just doesn't want to eat them.

On day 6 of the sweet potato trial, pre-school called to tell me that Asher was leaning over the toilet trying to vomit and was crying. All of our initial thoughts were that the sweet potato trial was failing. Turns out that Asher caught the virus that Leila had the week before. He had a fever for four solid days and complained of a tummy ache. I'm pretty sure that it was a virus and not a food trial failure. But it doesn't really matter because Asher doesn't like sweet potatoes. OK then.

This evening we began broccoli. Why broccoli? Because it's low on the allergenic scale and because it's what Asher requested. So, broccoli it is. I'll be reporting back in two weeks or less on the results.

Getting Ready for Kindergarten

Simi is getting ready to go to kindergarten. He's so excited; he just can't wait. Every time we talk about it, he gets a great big smile on his face and he jumps up and down; he just can't wait to go.

I think this year at pre-school has been difficult for him. He was REALLY sad last year when his friends moved on to kindergarten and he had to stay at pre-school. Now, he is the oldest in his class because he missed the cut-off for kindergarten by a mere two weeks. Academically, he is reading and doing math on a first grade level - in pre-school. So, he's excited to move up to kindergarten.

Poor kid, he's going to be in for a shock when he learns that he's far and away ahead of everyone else in kindergarten too. He is going to be bored out of his mind while his kindergarten class-mates are busy learning the letter of the week.

Simi and I went to the pediatrician for his kindergarten check-up. He got FIVE shots and he was REALLY brave about them. I just about passed out watching this kid get his shots and he took them so bravely.

The pediatrician was checking Simi's development and asked Simi to identify some shapes (circle, square, and triangle). Then, she asked Simi to draw one of each and to draw a picture of a person and she left the room to pierce another child's ears. Simi draws his shapes, then moves onto drawing his person. He first draws a head, with eyes, nose, mouth, and ears. Then, he draws a neck, shoulders, and arms. He draws a torso, and legs and feet. Then, he goes back to the arms and he draws hands and fingers. He draws five fingers on each hand. He would have continued but I asked him some questions and then we started reading a book.

The pediatrician walked back into the room, saw Simi's person and explained that at age five, they look for stick people with three parts (for example, a head, torso, and leg). Simi's person had well over 15 parts. So then the pediatrician and I talked of ways to keep him engaged and continue his love of learning while he's at school....

OK, now for his stats. But before we talk about this year's stats, let's review last year's stats. Last year, just before we got his heart fixed, he was in the 25th percentile for height and in the 5th percentile for weight.

Now, he is in the 60th percentile for height and 50th percentile for weight, with a BMI of 10.

And now we can register Simi for kindergarten.

Failed Apple Food Trial

On day 5 of Asher's apple trial, Asher had a full-blown asthma attack. Even the albuterol didn't help. It's painful to watch your child gasp for breath, to watch him cough so hard that he vomits, and resist eating or drinking any food because he feels sick to his stomach all the time. He's exhausted, yet the coughing interrupts his sleep.

Raj isn't convinced that the asthma attack and the food trial are related. I'm pretty sure that they are. He has only had two other asthma attacks: one at 4 months, right after we started feeding him rice cereal (with stage 1 applesauce) and one when he went on the elimination diet. I think that the food allergy triggers the asthma attack. At any rate, apples are out of Asher's diet and Raj and I intend to confer with Asher's doctor to get an understanding of what this means and what to do next.

If Asher is allergic to something as benign as apples, just imagine to what else he is allergic.

We've had one step forward with the successful pork trial and a million steps back with the big-time asthma attack.

More later as we figure this thing out..

Successful Pork

We're declaring pork a successful food trial. We're so grateful that Asher 1) can eat pork and 2) that he can eat and enjoy a food again. Asher is absolutely enjoying his pork fest.

Now we're trialing apples. Asher and I went to the supermarket on Saturday and bought tons of apples and applesauce. We're serving them fresh, dehydrated, fried, and cooked with pork. Asher is really having a good time with this now. With two foods in Asher's diet, his diet almost feels normal again.

Stay tuned to learn if the apple trial is successful.

Easter HinJew Style

We have been celebrating Easter all day and loving it. This morning, the boys woke up to find that the Easter Bunny left them both baskets filled with goodies. Out of respect for Asher, the goodies were all toys (silly putty eggs, eggs with stickers, rings, and other small fun things) and no edible treats. After breakfast, we had a few egg hunts, then went on to color Easter eggs. In short, we've all had a wonderful day.

What's a HinJew family doing celebrating Easter? Today's cartoon For Better Or For Worse speaks volumes. Honestly, what does Jesus have to do with the Easter Bunny?

Caminando!

Leila is 14 months old. We thought she'd never start walking. She seemed happily content to trot anywhere she needed to go while on four paws. She seemed to say, "why bother walking when crawling is a perfectly fine form of transportation?"

Then one day, she just started to take steps. Just as quickly, she stopped. There we were, patiently waiting for some more steps, which didn't seem to come.

Yesterday, she just decided that she was going to walk everywhere from now on and forget about crawling altogether.

And so it is. The little half-pint is walking.

[update]Here's a video of her starting to walk:


And another of her getting much better at it:

Asher Update

Asher has been eating pork for the past five days. I'm terrified to jinx it by saying anything and my fingers and toes are all crossed in the hopes it brings good luck. So far, we haven't had reason to stop the pork trial, so that's good news.

Yesterday, the boys went to a friend's birthday party. While getting ready to go, I had thought about what to do with Asher when the cake was being served and figured that I'd bring the Dum-Dum lollipops. They are allergen-free. My thought of Asher eating pork while the other children were feasting on cake and ice cream and juice was - well - was that it seemed really sad.

But in my rush to get to the party on time, I forgot the lollipops. We got to the party and when cake time arrived, Asher runs up to me and asks for his pork. Poor kid, he really wanted the pork. Every bit of distraction failed. He REALLY and TRULY WANTED THAT PORK. Little slivers of pork are Asher's treats. How absolutely incredibly sad.

So here we were playing in the gym, jumping on the trampoline and the ball pit (Well, Asher was jumping in the ball pit) and people kept coming up to us and asking if we wanted cake. And each time I said, "no thanks", I just felt sadder and sadder for Asher.

But now let's talk about good news:
1. His EE is under control. For the first time in Asher's life, his EE is under control. Just that is cause for celebration - woo hoo!

2. The first week that Asher began the elemental formula, I felt someone had to call the child welfare authorities on us. But then, during the second week, Asher underwent a transformation. He became a different kid. His energy level increased dramatically. He started climbing the furniture because he just didn't know what to do with his newfound energy. I used to call him my "teen-ager in training" because he was so difficult to get out of bed. Now, most days, he bounces out of bed in the morning and is raring to go. The dark bags under his eyes are gone. He seems to have more focus on tasks. Now we know what Asher SHOULD be like. Because he has always suffered with EE, we have never seen how he SHOULD be.

If nothing else, the trial of elemental formula has been a gift because now we know Asher's baseline.

Endoscopy results

We received the results of Asher's endoscopy today ..... everything looks good. There are still eosinophils in Asher's esophagus, but they are "under the limit". Dr. Putnam says that it just takes a very long time to completely get rid of them.

Now we can add foods back into Asher's diet - one at a time. Offer one food; wait a month. Offer another food; wait another month. After 3-4 foods, do another endoscopy and get the results. Repeat.

I know this is good news. This is exactly the news for which we hoped. The joy was tempered with other news....

While preparing for the endoscopy, the nurses asked routine questions. One of the questions was, is Asher allergic to any foods? After giving the nurses this long laundry list of foods to which Asher tested positive on the skin prick test, I asked Dr. Putnam what he thought - if Asher really was allergic to all those foods or if some of them were false positives. Dr. Putnam's response took me by surprise. He said that he suspected that they were all true positives - that Asher is truly allergic to all those foods and that there are probably going to be a lot more foods to which he tests positive. And he tried to prepare us for a lot of food failures as we go into food trials. The thought of that is overwhelming.

Anyway, for a lot of reasons, we chose pork as the first food to try. Asher's thrilled that he gets to eat food -- and less super-milk. So, we'll just keep going and see where this road takes us. But we reserve the right to change our minds at any moment.

Asher in Cincinnati, scope looks clean!

Asher and Liz are in Cincinnati for his first endoscopy since starting the elemental diet. Liz called from the hospital to tell me that everything went well and that Dr. Putnam said the scope looks clean, though he's been surprised before so we'll wait until the lab results are back Tuesday afternoon/Wednesday to be sure. Later, they went to the zoo and Asher had a rice cake, his first "real food" in about two months!

We'll post more later (including some pictures).

Admin note: RSS feed posts out of order

We've switched to the new Blogger interface. One of the new features is "Labels" (which the rest of Web 2.0 world calls "tags"). I've been going back and tagging labeling old posts. Unfortunately, Blogger orders the RSS feed by update time, and labeling counts as an update. The actual webpages are ordered properly, but if you are using a blog reader then the list of posts will probably be confusing (the "Set-back for Asher" post at the top of the list is actually from March 2005). If you aren't using a blog reader then this doesn't matter and is probably confusing ...

[April 3 update: you can use the link http://rubensingh.blogspot.com/feeds/posts/default?orderby=published to get a feed ordered by published date]