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.

Simi's swimming gear

Here's two old pictures of Simi posing with his new swimming outfit. This was a couple of months ago, but it still makes me laugh. The second picture is Simi showing one of his swimming strokes, but it looks like a great bodybuilder pose!

-raj

Update

Gosh it's been too long since the last update. Here are the highlights:

Simi had his first soccer "practice" on Wednesday. It was a miserably cold, rainy day and we were both very glad that he's playing INDOOR soccer. He and his best friend, Alex, are enrolled in soccer together and you've never seen anything as adorable as the two of them running around the field, chasing after their size 3, regulation weight soccer balls. There are about twenty 3 year-olds in the class. Graeme, the coach, did a GREAT job of coaching. We're still really amazed that he got these little toddlers to follow his directions. They played "red light, green light", where red light - you stop the ball with your foot, green light: you kick the ball, yellow light: you go SLOWLY, and BLUE light: you SIT on the ball. Then all the little toddlers lined up and kicked their ball into the goal.

The look of glee on both Simi and Alex's faces was just heart-warming. I don't think I've ever seen Simi this happy. Of course I didn't bring the camera; you better believe I won't forget it this-coming Wednesday!

Now for an Asher update (I have to take a big, deep sigh before posting. OK, another one): The good news is that he's eaten four 4 oz. jars of stage 2 veggies and chicken today -- plus a couple of Wendy's french fries. And it's only noon. In fact, I haven't even given him a bottle all day. That's the highlight of the week. In other good news, he's just tremendously, absolutely, incredibly adorable. Let's just leave it at the good news today.

This morning was the annual easter-egg hunt in our neighborhood. Both Simi and Asher had a wonderful time. Asher didn't really care much about picking up plastic eggs, but he had a great time playing on the playground. Simi had a wonderful time picking up the eggs and eating the candy treats inside them. He even got a couple of yo-yos -- woo hoo!

We'll post some photos -- just as soon as Raj teaches me how.

Until soon,
Liz

Set-back for Asher

We learned something this week: it's probably not a food allergy that's causing Asher to vomit. The results of the allergy tests show no signs of any allergy - except for wheat which is too small to count. Plus, even with his stringent elimination diet, he's still vomiting. So, his issue is not food related.

While it's a good thing that Asher has no food allergies, we're still left with the unanswered questions: Why does Asher vomit all the time? What's going on in that adorable tummy of his that's causing all the distress?

Stay tuned while we continue to go 'round and 'round in this seemingly fruitless effort....

Meanwhile, if you have any suggestions on doctors who may help or Internet searches to read, or anything else that may help poor Asher's stomach, we're open to hearing them.

Epoca de Fútbol

In addition to swimming lessons, Simi wants to play fútbol norteamericano -- otherwise known as "soccer" in this country (isn't that a weird word?). Thing is, on Saturday mornings, Simi can either play fútbol or go swimming.

The other day, Liz found a flier for an indoor soccer league. They have classes during the week at 4:30 PM -- late enough for one of us to leave work a little early and take Simi to soccer play. Simi was sooo incredibly excited -- he hounded us until we signed him up. Then, it was off to the sporting goods store to buy a ball. Simi is now the proud owner of a size 3, regulation weight soccer ball. I can't wait until I get to say my first, "GOOOOOOOLLLLLLL!"

Swimmingly Simi

Last September, Simi began swim lessons. He first began with a six-week session in the parent-tot class; he really enjoyed that class. The following six-week session, we put him in the 3-5 year old group lesson, which was much less enjoyable. With five boys in the class, he hardly had any practice time with the instructor. And since he's too small to reach the step they put in the water, he had to cling onto the side of the pool. With his back to the action going on in the pool, he couldn't even see what the other kids were doing. Last, since he was in the water for so long without moving, he got so cold his legs barely moved by the end of the class. He learned nothing.

When it came time to sign up for the following sessions, we asked if we could go back to parent-tot class. With a parent in the water with him, Simi can spend the entire 1/2 hour lesson learning to swim. Plus, he'll be moving around and keeping warm. With permission granted, Liz and Simi trotted off to swim class. The next six-week session, Asher and Raj joined in, now that Asher is finally old enough. The Saturday morning parent-tot swim class is now a family event.

What a difference a few weeks in parent-tot classes make! Simi is really doing great! He kicks and paddles and even puts his face in the water and blows bubbles. This past Saturday, Liz tied a noodle around his waste, and Simi motored off on his own. It was just beautiful to watch! Simi is VERY proud of his aquatic accomplishments! You can practically see his chest bursting with pride.

Asher is doing great too, considering he's been in the water exactly twice now.

Our instructor is trying to get us to move Simi up to the 3-5 year old class again; we'll resist for as long as possible :-)

Torturing Asher

In an effort to find out what's causing Asher's gastro-intestinal distress, he has had to endure a battery of torturous medical tests over the past few days.

Asher first visited the pediatric allergist, who heard Asher's story and said it sounds like eosinophilic esophagitis. The symptoms do quite resemble Asher's symptoms. If it is this condition, it explains why Asher's vomitting isn't like reflux vomitting and why he's not improving on reflux meds. To cure him, all we'll need to do is keep him away from the foods causing the allergy.

Two vials of blood were taken from our little dude to see if we can determine what is causing the allergy (if it is, indeed, this condition). We need to go back and get his skin tested, but that's another day.

The next day was shear torture: the upper gi series. This is the test where you drink some nasty-tasting barium and lay on a table and get x-rays taken of your belly while the barium is going through the digestive tract. It's quite neat if you're into that kind of stuff, but for a 17-month old who doesn't understand what's going on, it's really really scary. They strapped him down onto a board, strapped his arms over his head, put him under this big, noisy machine, and force-fed him some nasty goop.

The good news is that he's anatomically correct -- all the parts are there and in the right position. Even better news: no sign of reflux -- even with a belly full of barium, them pushing on his belly trying to provoke the reflux, and him screaming and crying in fear. If there ever was a time when a child would reflux, it would have been then. Which gives even more credibility to the eosinophilic esophagitis theory.

So we'll continue down this path and see where it takes us. Hopefully it'll take us to a healthy happy Asher -- one who doesn't vomit so regularly and who eats age appropriately.

We'll post his progress.

Put in-Take out

Asher has another game: the put-in-take-out game. I think you can get an idea of how it goes: you put something into a box, then take it back out. Except Asher's game has a twist to it: he puts a toy into the garbage can, then walks away before you notice him doing it. We have inadvertently thrown away a lot of stuff.

Adorable Asher

Asher has a new game. While we're in the kitchen fixing a meal, he toddles into the adjoining dining room and hides behind the wall separating the two rooms. Just before he hides, he smiles, waves, and says, "bye-bye". A moment later, he reappears laughing.

If we're too busy and don't play the game with him, he continues to say "bye-bye", each time getting louder and longer until we pay attention to him and play. If we play the game with him, he laughs hysterically.

We love the game too.

The Greatest Show on Earth!

Simi and I went to the Circus today. What a blast! Before the show they let people in an hour early to go down to the floor and watch some warmup stuff, and that was a lot of fun. Simi loved the show, especially the animals (elephants, horses, lions, and even a zebra!), the motorcycles, and the popcorn. And he got a new motorcycle to vroom!

We had excellent seats, 4th row, so we got a great view of everything, though taking pictures in the dark is tough. Simi enjoyed every minute of it (except he got a little bored waiting in line for popcorn). Hopefully next year we can take Asher as well.

-raj

Babysitter

We went out on a date, actually got a babysitter and went out to a nice restaraunt. Cecelia came over at 6:30, and Asher started crying when we left as we expected. We were nervous the entire time that he wouldn't stop crying or would throw up, but were delighted to hear both boys giggling when we got back home. Next time we'll be able to enjoy the night more not worrying about the boys, though we still had a good time.

We went to Backus, on Ninth St, a very nice Tapas place. It took a while to get noticed and seated at the bar, and the "about 15 minutes for a table" became "nevermind the table", but the food was very good, as was the Sangria, and it was a beautiful place. Next time we'll make reservations.

-raj