A SpiderMan Birthday Card

We've been doing a lot of talking about birthdays lately. Asher's birthday is at the end of this month and we're having Simi's birthday party early (October 1st) before he's off to surgery. Since Asher is an incredible fiend for The Incredibles, that's what his birthday theme will be. Simi has chosen a Spiderman theme for his party.

Raj's birthday was yesterday. Upon seeing the cake and learning that it was his daddy's birthday, Simi said, earnestly and excitedly, "Daddy, you need a Spiderman birthday card! Mommy, go get him one!"

Simi got lots of hugs.

Conversations with Asher

This morning, while Asher was playing outside with his daycare class, he tells the head teacher, "I'm thirsty". Bridget says, "OK, let's go inside and get you some water." To which Asher replies, "I want orange juice." Bridget replies, "Asher, we don't have orange juice." "Apple juice?", Asher asks. "No juice, Asher, we only have water right now", replies Bridget. "OK, then. Water's good." says Asher.

Quite a conversation coming from a kid who's not yet two.

How Can We Explain It To Our Children?

In the aftermath of Hurricane Katrina, I find myself trying to answer one basic question: How do we explain what happened in New Orleans to our children?

I've been hiding the news of the storm's aftermath from both Simi and Asher. Asher is not yet two, so he's still rather oblivious to things not in his immediate world. But Simi is nearly four and is starting to understand and ask questions.

Simi hears things. He hears the news on television or on the car radio. He hears the two of us talking about the news. He hears his teachers talking. He's my son, and because of that, I want to shield him from the tragedy in New Orleans.

But what do I say if he asks?

Mommy, why did the rivers flood the city? Mommy, why did all those people and their pets die in New Orleans? Why were people forced to stay in that building - with no food or drinking water, no place to bath or poop, in the squalid, stifling air with no electricity? Why didn't anyone help them, Mommy?

How do I begin to answer his questions?

Open Heart Surgery

Simi was born with a heart defect; an Atrial Septal Defect. That means that there is a hole between the two Atrial Chambers of his heart where there should be a wall. As heart defects go, this one is the easiest one to fix. But it does mean open heart surgery. This is where they crack open his chest, stop his heart, sew a patch in the hole, restart his heart and close him up.

We hoped to be able to avoid open heart surgery and close the hole via catheterization instead. Unfortunately, the hole is too large to be closed via catheter/amplatzer device.

Simi is nearly 4 years old. We've known about this defect since he was two months old. And we've known that the day to close the hole was coming. Now, it's nearly upon us. On October 6th, Simi will have open heart surgery to close the hole.

After a lot of thought and investigation, we've chosen to go to the Children's Hospital of Boston for the repair. They're leaders in pediatric cardiology and he's in good hands there.

Now let's hope that time fast-forwards quickly to November/December so that we can have this thing behind us.

A Baby Sister

And now for more news: Simi and Asher are going to get a baby sister. A baby sister! Asher is oblivious to this news; Simi is really excited about it. Us two adults are still getting used to the idea of having three, no wait THREE children.

The big event is expected in mid-January.

August Update

We haven't written in awhile. In a way, there was a reason for it. Well, perhaps there are many reasons for it. The main reason is the overwhelming task of preparing for the repair of Simi's heart defect. But more on that later.

Our summer has been wonderful. It's been filled with t-ball and soccer and splashing in the swimming pool and sliding down the incredibly fun water slide. It's been filled with playing on the new backyard play set and our way-too-infrequent get-togethers with our friends.

Asher is talking up a storm now. His favorite phrase is: what's its name? He remembers all these new vocabulary words and uses them properly in sentences - with no help at all. He's a special kid. He's an incredibly happy kid; so full of life.

Simi, too, is growing by leaps and bounds. He's getting more "boy-like" and less "toddler-like" every day. He talks up a storm and it's fun to listen to his imagination blooming while he spits out a stream of consciousness.

We're incredibly lucky to have such wonderful kids. These kids are just amazing.

It's a good time to end this post - on such a note. We'll write about the upcoming open heart surgery in a different post.

Potty Time for Asher

Our baby has just turned 21 months old. In fact, we still calculate his age in terms of months, not years. For me, that means he's still our baby.

Most kids learn to use the potty at around age 2 1/2. Girls tend to learn a little earlier, boys tend to learn a little later, so somewhere between the ages of 2 and 3 years, most kids learn to use the potty.

Not Asher.

The other day, while at daycare, Asher asked to use the potty. Then, once on the potty, he proceeded to make a pee-pee in the potty. He did that two additional times that day. Since then, he been regular about pee-peeing in the potty before his bath, when he first awakes in the morning, and when he asks during the day.

Holy Cannoli!

Our sweet baby is growing up! snif

T-ball Time

The day of Simi's first T-ball practice has FINALLY arrived. Simi was so excited about it; he has been looking forward to this day for a LONG time.

Little did we know, our first day of T-ball practice should have been long ago....

It seems like all the kids on Simi's team have already been playing t-ball. In fact, Simi seems to be one of the few players on the team not well-practiced in the art of catching with a mitt and hitting with a big, heavy bat.

Simi's lack of experience hasn't curbed his enthusiasm for the sport at all; he had a wonderful time.

Magnificent Milestones

Our baby is growing up. It's a bittersweet thing, really. On one hand, I want him to stay that sweet adorable baby that he is yet on the other hand, I love to see him develop into the person he's meant to be.

In this round of developmental milestones, Asher just galloped through them.

First came the talking. He spent a week putting words to objects (hat, dog, shoe, toe), then decided to speak in whole sentences. For the most part, those sentences are still two-word sentences (my hat), but the way in which he uses them are quite funny. One day he stands on a bench and pronounces, "I'm tall".

Asher also outgrew his crib. Although he's only 20 months old, he had outgrown the crib several months ago. We finally admitted to ourselves that our baby is growing up and we got him a "big boy bed". He loves it and sleeps so much better now. We're all a lot happier, I think, except for the knowledge that our baby is turning into a boy.

Pretty soon our baby's going to go off to college - sniff.

Brotherly Love

Before Asher was born, people would tell us stories of sibling rivalry - the trials and tribulations of having two children of the same sex that are very close in age. In hind sight, it's probably similar to being forced to listen to the plethora of nightmarish birth stories while pregnant with your first child. (Why do people feel like they have to tell a new mother all those horrible stories, anyway?)

Now that Asher is here -- and walking and talking -- these two boys are so incredibly close. They absolutely love each other. Simi LOVES to read to Asher, teach him how to brush his teeth, and do other big boy stuff. Asher follows Simi around like a little puppy.

Sure, they have their moments. Like when our socially inept 20 month-old takes the toy right from Simi's hand while he's playing with it, Simi is sure to holler. Or when Simi pushes Asher down in his effort to be first to wash his hands before dinner, you can be certain to hear a protest from Asher. Or when the boys are playing adorably and they accidentally bonk heads, well, sometimes they both cry in pain.

Tonight, Liz drove Cecilia home while the boys sat on Raj's lap and read bedtime books. Better said, Simi read the books while Asher turned the pages. And when it was time to say good-night and go to bed, Asher had an absolute fit. He didn't want to be away from his brother.

Annual Beach Trip

It's been awhile since we added an entry. We've just returned from a week at the beach. This year we went to Corolla Light, which is near Duck, NC. That's in the Outer Banks, NC.

It was a really nice trip - very fun and relaxing. The weather was beautiful - with the exception of one day. The boys had a great time. Simi's best friend Alex and his family was also there, which was great. Simi and Alex had a lot of fun playing on the beach and playing in the houses. Asher did his best kid brother routine and chased after them as best he could.

Asher seemed to have a number of developmental advances while we were at the beach. His vocabulary grows by a number of words each day and now he's even putting together two-word sentences. He's still a super funny baby and knows how to get us to really laugh. That kid's going to be a comedian when he grows up. Asher's also into the "I'll do it myself phase" - which means that I have to wait patiently while he struggles going up/down stairs, toddles to the beach or to where-ever we're going, or putting on shoes, etc.

We'll post pictures soon.

Tomorrow we're back at work/school. We need another week at the beach, I think.

---Update: Here are some pictures:

At the beach

Simi and Alex play on the surf

Asher at the Beach

Simi's Cardiology Appointment

Here's an update for you on Simi's appointment with his pediatric cardiologist: We've been going annually to monitor his atrial septal defect, or hole between the two atrial chambers of his heart.

Summary:
In a nutshell, we're going to wait until this time next year before closing the defect. On May 12, 2006, we'll do another echo of the defect and talk with his Dr. about the best method of closing it. At that time, I think we'll go ahead and schedule "it" (whatever method "it" may be).

Background:
When he was under two, the Dr. said the only way to close the defect was open heart surgery, where they open his chest, break open his rib cage, stop his heart, and put him on a heart/lung bypass machine for hours, then sew a patch where the hole is. The risk of complications is 1% (amazing it's not higher), but it's highly invasive and requires a long recuperation period. Plus, being on heart/lung bypass reduces your mental capacity.

Last year, the Dr. said that he now qualified for a (much) less invasive procedure, where they can snake a catheter in through a vein in his leg and place a device (amplatzer) in the hole to close it. The reason he suddenly qualified is because there is now tissue on either side of the hole, which they need to anchor the device. Last year, the Dr. said that kids do better the bigger they are and suggested we wait a year. So we did.

More information on this visit:
This year, after doing the echo, the Dr. said that there is a 70-75% chance that they'll be able to do the amplatzer catheter procedure, but they'll only know that when they go in to place the device. (Last year, we didn't realize that there was a chance they couldn't do it.)

It's questionable just how much tissue he has on either side of the hole and they'll get a better view of it when they go into his heart. One side, in particular, has less tissue than the other side. So we could submit him for the catheterization procedure - go through the four hour procedure and its risks - only to have to submit him again for open heart surgery.

Timing (age of the child) has its factors too. The younger the child, the less they remember and the less emotionally traumatic it is. It's important to close it before the child starts school so he doesn't miss 6+ weeks of school.

While our memories can certainly fail us, both Raj and I thought there was more tissue on either side of the hole this year over last year. And the year before, there was no tissue at all on one side. So it seems like the tissue is growing. At worst, we'll still have the same odds next year that we do this year.

So we decided to wait a year - with the hope that the tissue on either side of the hole will grow and we'll have improved odds for a successful amplatzer device. Simi will be 4 1/2 then with the plan to close it before he's five.

Asher's Test Results

The results of Asher's endoscopy and pH probe came in today (insert drum roll here....):

Biopsy results show "intense eosinophilic infiltration". If you remember from an earlier post, eosinophilic esophagitis is an allergic reaction that manifests itself in the esophagus. No wonder the reflux medication didn't help him any. His pH probe study came back normal. (Did you know that everyone refluxes at some part of the day?)

At least now we know. And now we can give him the appropriate medicine which will treat his condition.

And for all those doctors who said this thing was behavioral and not medical, I give them a great big, "TTTHHHHPPPPPFFT".

There's a moral to this story: ALWAYS believe the mom.

Funnybaby

AsherStar	Asher's new "hat"

Here are some recent photos of our clown-baby to entertain you while you're awaiting Asher's test results. He's a silly baby.

Last week-end, while doing sticker work, Asher suddenly decided to put his stickers on his face. What a goofball! You can see the result in this photo.

Later that day, upon awaking from his nap and seeing Simi's new t-ball glove, he exclaimed, "my hat!" and promptly put the glove on his head. We were able to compose ourselves from our deep belly laughs enough to snap this photo.

Asher Endoscopy and pH Probe

Asher with pH Probe	Asher in Jail

Asher had his Endoscopy and a pH Probe yesterday. We'll get results on Wednesday.

(we'll edit this post with more info later...)

**
It's Liz writing. I've been struggling for days with what to say about Asher's endoscopy and pH Probe. My first thought is to make it short and succinct. That thought is quickly followed by the thought to give more information for folks who may be surfing into this blog who are going to have to go through this stuff with their own child.

In some ways it was like running a marathon. Some parts were tough, but if you can stick with it, you'll make it to the finish line. Good golly, I can't tell you how many times I wanted to quit during that 24 hours. Seeing Asher suffer so much at some points really got to me. But we did prevail and made it to the 24 hour mark and now we have the data we need to know what's going on in that adorable little body of his.

So, without further ado, here goes:

The endoscopy experience was a little weird, but over with quickly. The anthesiologist was a bit lackadaisical about Asher's weight (do they not need to get his weight right for the anesthesia?), the doctor was a bit lackadaisical about getting into the room and preparing for the endoscopy, and it must have taken the Dr. a total of 5 minutes to do the actual procedure. I guess that although it's a big deal for us; it's routine for them. What's important is that we got the look and the biopsies and that Asher did fine. We'll get the results of the endoscopy on Wednesday and plan a course of action from there.

Next, the pH probe: nurse Fay inserted the probe while Asher was under anesthesia. They also taped Asher's arms to boards -- from his armpits to his fingers -- so that he wouldn't be able to pull out the pH probe.

Poor Asher, he came out from anesthesia and couldn't move his arms and was hungry and mad. Anyone seen the movie, "The Incredibles"? If so, think of Jack-Jack at the very end of the movie. Asher was so mad, I thought he'd burst into flame.

The nurse wouldn't let him eat or drink anything until they properly placed the pH probe using x-ray. I'm a big planner, so the rest of the pH probe placement drove me absolutely nuts. The nurse waited until Asher was ready to be discharged from recovery to call x-ray and have the probe placed properly. When Asher was ready for discharge, she was hard to find. Meanwhile, Asher was crying because he was hungry. Faye returned and called x-ray. Then we had to wait for x-ray to get ready. Meanwhile, Asher is screaming mad and really hungry and I wasn't allowed to feed him.

Finally, we get into x-ray. We put our precious baby in a foam basin (it keeps him in place during the x-ray) and we're told to stand behind the glass because it will only take "2 seconds" to place the probe. Minutes later, we're still waiting. Asher is crying hysterically and I'm ready to scoop him up and take him out of there. The test just about stopped before the probe was even in place! I think that was the worst part of the entire 24 hours.

After the probe was placed, we were allowed to offer Asher a bottle. He took one sip, felt the probe down his throat and started to cry. He took another sip and did the same thing. Then he cried and cried because he was hungry and there was some horrible thing going down the back of his throat. Asher cried and cried for hours. He cried so hard he became hoarse. Again, I doubted we could make it the entire 24 hours.

At about 6 PM, Asher drank his bottle. By this time he was so hungry that he drank the entire 8 oz in less than 4 minutes! Then he promptly vomited it right back up again. I was glad the nurse suggested I bring a change of clothes! I cleaned us up and changed us both and gave Asher a few extra ounces of bottle. He stopped crying and was a bit less cranky.

Asher vomited 3 or 4 more times during the night. We both ran out of clothes to wear and started to wear hospital gowns. I got about an hour sleep; Asher got about 5 hours of sleep. We did manage to get through the night. By the time 8 AM rolled around (Nurse Faye mentioned that she and Dr. Ulshen would return to remove the pH probe between 8 and 9 AM), we were doing the victory dance. We made it!!!

Poor Asher was completely traumatized by strangers. Anytime anyone came into our room he cried, turned away from them, and clung to me like crazy. I hope he forgets this experience quickly.

Next step....patiently await the results....

Asher Update

Asher's endoscopy and pH Probe is scheduled for Thursday, April 28 and 29th. We have to be at the hospital at 8 AM Thursday. The endoscopy itself will happen at 9 AM - right after they put him under general anesthesia. After the endoscopy, they'll insert the pH Probe, do an x-ray to get perfect positioning, then bring him to the recovery room and allow him to wake up from the anesthesia. Then, we'll move to a hospital room for the next 24 hours while he has the pH Probe in place. The plan is to remove the probe at 9 AM on Friday, April 29th. Then we get to go home and recuperate.

The probe itself will be inserted through Asher's nose and into his esophagus. By measuring the acid that may be splashing into his esophagus, it will tell us if he still has reflux and, if so, how much and when he's refluxing. We then use that information to guide us in our next course of action.

They'll have to put mitts on Asher's cute little hands while the probe is in place. Since it's irritating, he'll try to pull out the probe. We get to entertain him for the 24 hours that the probe is in place so that he doesn't try to pull it out.

In preparation for Asher's pH Probe, we have had to stop giving him the medicine we've been giving him. First we had to remove the Prevacid. Today we had to stop the Reglan and Erythromycin.

Interestingly, his eating has both taken a nose dive AND improved. He's eating table food at school, but he refuses any sort of solid food at home. Plus, today and yesterday he seems to have a lot more energy and seems to be a lot happier -- at least at school. At home he's the same ol' adorable Asher.

This is really one of those times where I wish the "vulcan mind-meld" was a real thing - where we can go into Asher's adorable brain and figure out exactly what is going on with him. Guessing is REALLY hard.

So, please wish that time goes fast for us - that Friday comes quickly, and that we get some answers on what really is going on in that adorable little belly.

Asher Update

We took Asher to UNC Pediatric Gastroenterology today for a second opinion. He's nearly 19 months old and eats only stage 2 purees and a bottle and continually vomits and we're desperately searching for a way to get him better.

It was an interesting appointment.

The Dr. listed the four possible issues that could be the cause of Asher's problem:

1. Structural: something didn't form right when he was in the womb.
2. Reflux: That spincter muscle in his stomach just isn't doing its job.
3. Allergic: This is that esosiniphial esophagitis thing I mentioned earlier.
4. Delayed gastric emptying: Where his stomach doesn't empty as quickly as it should.

We've tested for items 1 and 4. Structurally, all his parts are in the right place and they all tilt the right way. His stomach empties just fine, although two of his medicines are to make his stomach empty faster anyway (because it makes him vomit less). That leaves reflux and allergy.

Asher had an endoscopy in June 2004 that revealed inflammation due to reflux, so that's the likely culprit. Thing is, we're already treating him for reflux. The only other treatment is surgery, which has several complications a large percent of the time. Deep heavy sigh.

The Dr. suggested doing a second endoscopy to rule out item 3, because if it is that, then it's a different treatment. He also suggested doing a pH Probe, which is the definitive test for reflux. Although we're already treating for reflux, testing for it would give us the answer - definitively - if that's what's going on in Asher's adorable little stomach.

So, our second opinion confirmed our original doctor. I guess that's good.

The Dr. also told us that he sees cases like Asher regularly and we should get used to this because it's going to be our way of life forever. Deep, deep heavy sigh.

I guess there are worse things. We can teach him how to feed himself his stage 2 purees. I can get him proper nutrition via liquid and puree. His weight is fine, so he's getting calorically. And I don't have to give up searching for a cure for him....

Which leads me to the next step: endoscopy and pH Probe. We had already scheduled these tests at Duke, so we're going to move forward with them. They're scheduled for next Thursday and Friday, April 28th(?). Asher will be admitted to the hospital. They'll put him under general anesthesia, do the endoscopy and insert the pH Probe. Then we'll hang out in a little room for 24 hours and let the pH Probe do its reading. On Friday at about 9 AM, they'll remove the PHprobe and we'll get to go home.

Deep, deep, deep heavy sigh....

Verbal Asher

While Simi accomplishes his literary skills, Asher is accomplishing his own communication skills. Asher is learning to talk. He is also very proud to show anyone (well, not just ANYONE, it has to be someone he KNOWS and TRUSTS) his eyes, ears, nose (while he sticks his finger IN his nose), mouth (which he lovingly refers to as his "mouff"), and then he lifts his shirt and says, "belly" (or a word that resembles that word). The last item is said while he sticks his finger in his bellybutton and with a very proud smile on his face. If encouraged, Asher will also point down to his feet and proudly say, "toe".

Today he began saying words that have "s" in them. My guess is the day he begins saying, "Simi" is very close.

Reader Simi

OK, proud parent boast here: my son, who has not yet turned 3 1/2, is reading!!! I'm so proud of my little reader!!! We write a simple word on the Magna Doodle and Simi sounds it out and shouts out the word. WOW!! Simi absolutely loves this game and he keeps asking to play it again and again. Raj is great at thinking up words to write. My little reader!

Liz learning to add photos

Simi and Alex	Asher the clown

Thought y'all might enjoy some recent photos of the boys. The first is of Simi and his friend Alex at fútbol practice. The second is of Asher with a half of a plastic Easter egg on his nose. We played with these eggs a lot this season and Asher had a great time making us all laugh when he put the egg on his nose. That Asher is such a clown! Every time I see this photo, I burst into laughter.

These photos are a poor substitute for the real thing; the boys are so much cuter than their photos reveal!

Click on the photos for a slightly larger image.