Nicole's Bat Mitzvah

This past weekend Simi and Liz went up to NY for cousin Nicole's Bat Mitzvah. Nicole is, undoubtedly, Simi's favorite person in the world, and he got to spend a lot of time with her and her friends. Simi couldn't get enough of dancing with Nicole and her friends.

Click on each photo for a larger image.

Asher's Throne

We bought a vibrating toddler seat for the boys to sit in once Baby Sister arrives; Simi used to enjoy sitting in the baby bouncy seat when Asher was a baby even though he was too big for it, so we figured this would be better. Asher already loves to turn on the vibrations and plop himself down on his throne to watch TV, and we think it looks pretty funny.

Simi getting dressed up

Here's a picture of Simi trying out some new dressy clothes for his trip up to New York for his cousin Nicole's Bat Mitzvah. I caught him in a nice "cool" pose here that I like a lot :-)

Number 3

With all our energy going into Simi's surgery, in addition to focusing on our full-time jobs, running the household, and raising Asher (not necessarily in that order), we haven't had much time to focus on the arrival of Baby Sister. Someone recently reminded me that her arrival is imminent in about 9 weeks. HOLY CANNOLI, that's soon! She needs a name!

Terrible Twos

It looks like the "terrible twos" have overtaken our sweet, easy-going, happy, young Asher. He routinely has break-downs; he knows he really wants something, but he's not all that certain what that something is. Admittedly, it's really hard not to laugh at him when he gets himself into a fit. Although we try hard not to overtly laugh at him; it's really hard to resist.

For example, back in Boston, early one morning when he was in a sleepy daze, he got into a frenzy, clung to the apartment wall and announced, "my wall!". Both Raj and I were rolling on the floor with laughter at that one. Now, he's begun to wail, "I need (name of parent who is not there)! I need (name of something not readily available)!" Luckily, Asher gets distracted easily and forgets all about what he needs or made him mad.

The "terrible twos" hit Simi around age 12 months and lasted until he was about 3 years old. He would routinely fling himself on the ground right in front of us and pound the floor with his fists. Now THAT routine was difficult not to laugh at. Raj and I would simply step over Simi and pay him absolutely no attention. Simi would get up, fling himself in front of us again and pound his fists. Way too funny!

Words From Our Two-Year Old

Last night, while trying to divert Asher's attention away from Simi's new car to a different car, I asked Asher if he wanted to play with the dump truck. I then proceeded to vroom the truck around in order to entice him.

Asher corrected me. "It's a cement-mixer, Mommy."

He was right, of course.

!

I have a confession: every time I see Simi's scar, I want to cry. I get this lump in my belly and this big rock in my throat and think that it was Raj's and my decision to hack up our child. We marred his beautiful body and gave him a permanent scar - a great big bang ! - on his chest.

When I'm with him, I act non-chalant about it; I don't want him to be self-conscious about it or think there's anything wrong with having it. I do everything I can not to draw attention to it. But it pains me to see my baby all carved up.

I knew I'd feel this way. I thought about it a lot before the surgery. I even had photos taken of him in a bathtub setting (with Asher) so we can have a permanent memory of his perfect chest. And rationally, I know we didn't have a choice - that scarring his beautiful body was the only way we can fix his heart. And fixing his heart was more important that having an unblemished chest. But there it is - right on his chest - the perfect exclamation mark. !

Well, I guess if you're gonna get a scar permanently placed on the middle of your chest, then it should be a good one - like a ! A very appropriate symbol for it's purpose. Yep!

So why does it upset me so much?

Asher Who?

While Simi's gotten a lot happier, Asher's gotten a lot grumpier. Now, in addition to the night antics, he is giving his day care teachers a hard time too. He cries when we drop him off in the morning and is very tired and cranky by lunchtime. Deep sigh. Is he needing more attention? Or has he spent so much time with us that he doesn't want to leave our sides?

Last night, after both boys said they wanted to sleep in each other's bed, we moved Asher's bed into Simi's room. They both loved that idea. Strangely, they both fell asleep quickly and quietly (I feared a night of raucous playing). I hoped that being with Simi would keep Asher in his own bed - but that's not how it turned out. At around midnight, Asher came crying that he wanted to be with us in the big bed. Deep deep sigh.

This, too, shall pass.

Simi's Finally Four!

Because of his surgery, we held Simi's formal birthday party a month early. Since having 20 four year-olds into a gym can be very physical, we chose to have Simi's party before his surgery. And since we left for surgery on October 4th, we had his party on Saturday, October 1st. That's when we started celebrating Simi's birthday.

Then, we had a small party while we were in Boston. Well, the party was actually for Simi's Grandpa Harris, but Grandpa Harris didn't want a party so we had one for Simi instead. Plus, he had just gotten out of the hospital, so it seemed like a good idea...

And, of course, we had a party at Grandma and Grandpa Singh's house to celebrate...

And I can't remember the rest right now, but I think we had a few small parties along the way...
But I do remember thinking, "is this kid ever going to turn four? Good golly, it feels like we've been celebrating for a LONG time and he's STILL not four?

Today, he finally turned four. He had an absolutely wonderful day. The first thing Simi said to me when he woke up this morning is, "Mommy, I'm four years old today!!!!!" He was VERY excited. He dressed up as Spiderman (his choice), and happily paraded around with the other Spidermen in his pre-school parade. Then, we had a small Halloween party at his pre-school (parents invited). Then, they sang "Happy Birthday" to him at lunch time. Then, we had a cake and a small party for him here at the house.

We can now FINALLY stop celebrating Simi's birthday. Phew!

Asher Who?

With all this hub-bub surrounding Simi, it's easy to forget about Asher. Plus, Asher is such an incredibly easy-going kid and isn't the kind of kid who screams for attention.

Until now.

Since we've returned home, Asher has had a very difficult time sleeping. He's always liked to sleep snuggled up next to someone, so sleeping in his own room and his own bed has always been difficult for him. Now it's impossible. After two weeks at home, he's finally falling asleep in his own bed - but only if we're in the room with him. He wakes up in the middle of the night, sees that we're not still sitting in the rocker, and gets up to find us. After nearly two weeks, we've given up on trying to keep him asleep in his own bed and have reluctantly pulled him into bed with us in the middle of the night. Chronic exhaustion will do that to a parent.

Truthfully, the only time Asher has slept really well has been when sleeping with us or sleeping with Simi. So we're thinking of moving his bed into Simi's room and letting him sleep there -- but we don't want to ruin Simi's ability to sleep either. So...no hasty decisions. We'll see how it turns out..

A Weighty Issue

Simi's a small kid for his age. He's about average in height but he's very skinny. During the past year, he's barely gained a pound. We feed him ice cream nearly every night before bed (Ben & Jerry's, which has the highest fat content) in an effort to put some bulk on his scrawny frame. With all that we've pushed into his mouth, Simi has managed to gain a mere one pound this year. This entire year, he has managed to stay at around 29.x pounds. After a full meal, after dinner, bath, soaking wet, he'd MAYBE manage to get to 30 lbs. His lack of weight gain was one of the reasons why we wanted to have his ASD repaired sooner rather than waiting any longer. He is in the 5th percentile for weight and there was a concern that it may soon affect development of vital organs, such as the brain.

See, with his heart defect, his body had to work harder. That means that Simi's body burned more calories than other boys his age.

So now the hole is closed.

He got on the scale last week. Morning weight. Naked. Before breakfast. After potty time. 31.2 pounds. HUH? This kid, the one who managed to barely gain a pound all year, gained a pound in 2 weeks time. HUH?

This morning I weighed him again. Again, it was the first thing in the morning. Naked. Before breakfast and after potty. 32.2 pounds. HUH? He gained a pound in a week? Can that be possible?

We'll keep you posted on his progress...

Back to School

Simi returned to school full-time this past Monday. He was so excited to see all his friends and his teachers. He really missed them.

I can't believe that 2 weeks after open heart surgery and the kid is running around nothing ever happened.

Having said that, his poor teachers have the most difficult job. The kids are on the playground several times a day and they get to keep him from hurting himself. They're in an unenviable position. Every day we tell Simi when we drop him off at school, "Stay in the sandbox, Simi", and so far, he has. We'll all breathe a sigh of relief 3 weeks from now, when he's 6 weeks post-surgery and much more fully recovered.

A Skinned Knee

In our quest to keep Simi injury-free, we went to the zoo on Friday. It's about a 1.5 hour drive each way and we thought to take the double jogger so the boys could sit during the entire journey - perfect!

We did manage to get the boys to sit in the jogger for much of the zoo trip, but there were parts they wanted to get out and walk. At one point, while helping Simi get back into the jogger, Simi tripped on my (Liz's) foot and fell. He took a hard fall and immediately started crying. Something like this issue was exactly what we were trying to avoid! My breath was held while Raj and I examined Simi. The result? A skinned knee. There was no injury to Simi's chest at all. Phew!

Later, back home, we had to clean the skinned knee and put antibiotic ointment on it. Just the thought of cleaning the knee was enough to send Simi through the roof; he wasn't letting us anywhere near the knee. The look of fear on his face was at maximum level - at just the mere thought of anyone touching that knee.

Next step? Find a way to help Simi work through some of these residual fears.

Running in Circles

In some ways, this recovery thing has taken a different turn.

During Simi's open heart surgery, the surgical team cut open Simi's breastbone to get to his heart. Now, he needs to give his bones time to mend. This means no falling down. Which means we need to keep him from running around so that he doesn't fall down.

Problem is, Simi has about 10x more energy than he did BEFORE the open heart surgery. Guess his body really and truly was working harder due to the defect. Anyway, today after nap time, Simi was running in circles in the living room, then jumping from the furniture onto the floor. Raj was home with him and had a heck of a time getting the kid calm (let's do a puzzle, Simi.).

These bones just can't mend fast enough!

Completely Fixed

We went to our local pediatric cardiologist for our follow-up appointment today and received surprising news: Simi never has to return. His heart defect is completely fixed!

The doctor listened and did a short ultrasound to check for fluid around the heart and/or leaks in the patch - both of which are common complications. Everything looks perfect.

Raj and I were both thrilled. Simi was excited that we can now leave the doctor's office and go pick up acorns.

We've never had a cardiology appointment where we didn't make a follow-up appointment. It seemed weird to walk out of there knowing that we won't return.

Our challenge now is to keep this increasingly energetic kid from hurting himself. It takes some time for his bones to heal and we're supposed to keep him calm. HA! This kid has more energy than ever and it's really hard to keep him from running around.

And for the curious, the size of the hole (or should I say: former hole?) is about the size of a quarter.

A Healthy Dose of Asher

Now that we're back at home and have gotten a bit of sleep, we can begin to tell you a bit of how Simi spent his first few post-hospital days...

Understandably so, Simi was really sad while in the hospital. Once he was released, he and Asher got to pal around together again. Asher is such a two-year-old goofball that it's hard for anyone to be sad while being around him. Plus, Simi and Asher are genuinely close, so it helped Simi a lot to be with Asher.

After just a day or so, our challenge as parents was to keep Simi and Asher from hurting Simi. Simi kept forgetting that his chest was just recently cracked open and we'd regularly see the two of them begin to wrestle or hug or do something on the physical side. And with the Boston weather as dreary as it was, we were cooped up in the apartment. Being cooped up in the apartment made it more difficult for us as parents to keep the two of them from hurting Simi.

We did a lot of sticker work (thanks, Peter and Karen, for bringing the 10,000+ stickers. I think we used them all!) We did a lot of coloring work (thanks, Trettle family, for the crayola markers. They were fun! We used them up too!) And we saw a lot of matinee movies. We went to the aquarium so often that we became members. At the aquarium, we could strap the boys in the stroller and keep them calm and contained - perfect! We could also sit in the IMAX theater and watch really cool 3D movies. (OK, only Simi thought they were really cool; Asher was terrified.) We also saw the new Wallace and Grummit animated movie. Asher got over his fear of movies while watching that one.

How's Simi doing now? Our challenge to keep Simi calm and safe is even more difficult now. Rest and regular Motrin/Tylenol doses help Simi routinely forget that his chest just got cracked open, and it's way too enticing to engage the playful Asher in a game of wrestling. Thankfully, the weather in NC is MUCH nicer than we had in Boston. We've been taking them out in the double jogger (strapped down and sitting - perfect!) for long walks since we've been home. It'll be easier to keep Simi calm once Asher returns to daycare on Monday. Then we'll probably return to doing more table work - painting, crayons, puzzles, reading, etc.

The cardiologist mentioned that Simi would be more tired than normal these first few weeks. We've noticed only the opposite. He seems to have a lot more energy now than he ever has. If this is more tired, then we're really in trouble when he gets less tired. That's good, right?

We had hoped that now that we're home and they're sleeping in separate bedrooms, that perhaps they'd sleep longer in the morning. They must have developed some sort of sibling radar because this morning Asher awoke at about 5:30 AM and Simi awoke about 10 minutes later. What's up with that?

A lot of folks have asked to see post-operative photos of Simi. Maybe in a couple of years. Seriously. Raj took a lot of photos during the trip and I (Liz) had (have?) plans to make him a photo book of the experience. We viewed the photos once while in Boston and they're so difficult to view that I bawled like a baby through the entire slide show. In other words, I think it's going to take a while before we can view them again - nevermind post one.

Alright, from now, I think the posts are going to be a lot happier. Thanks again for all your support, good wishes, cards and prayers. We appreciate every single one of them.

Back in NC

We are back in sunny Carolina! Truthfully, we're exhausted, so perhaps we should blog tomorrow when we can actually type complete sentences.

Until then, here's some good news worth sharing:

Simi's back to his happy self again. It doesn't even seem to bother him that he has this nasty gash down his chest. He just calls it his "boo-boo" or his "scar" in a rather non-chalant way. He's an amazing kid.

We asked Simi to name the highlight of his Boston Adventure, part II. Immediately, he talked about picking up acorns in the park across the street from our apartment. He carried those acorns all the way back to NC, by the way. So now you know: picking up acorns ranks higher than getting a heart fixed (from a 4-year-old's perspective).

Although it may be temporary or perhaps completely unrelated to his heart, Simi's actually eating A LOT. Twice in the past few days he's even mentioned that he's hungry! The kid is nearly 4 years old and I can't ever remember a time when he's looked forward to eating or even confessed to being hungry. Regardless of the reason, it's music to our ears and we're happily feeding him.

Last, although Simi and Asher have been extremely close, I think this trip has made them even closer (if that's possible). They missed each other terribly while Simi was in the hospital. Back at the apartment, they shared a bed. From a parent perspective, it was amazingly cute to see them sleeping together. Now that we're home and they're each sleeping in their own beds, it'll be interesting to see how well they sleep without each other. (Selfishly, I hope they sleep LATE tomorrow!)

And on that note, it's now 8:15 PM and well past OUR bedtime. We'll write more about the rest of our Boston Adventure, part II tomorrow.

We're all back at the apartment now. Simi is back to his normal self again, you'd never know he just got out of the hospital unless you saw his chest. He's laughing and goofing around and being silly with Asher as if nothing happened.

Yesterday Liz's brother Peter and family came down and we all had a great time together here at the apartment. They brought a bag full of birthday presents and Simi had fun opening them and then playing "Hi Ho! Cherry-O" with cousin Nicole and Aunt Karen. Peter picked up some "Legal Seafood" for dinner, and we ended the evening with a bithday cake for Simi and Grandpa Harris (whose birthday was today).

This morning the grandparents headed back home, then the rest of us walked around the mall for a while and had lunch together before Peter, Karen, and the girls headed back home.

We're being Released!

We're nearly out of the hospital!!! Woo hoo! We're out of here just as soon as we receive the discharge papers from the nurse. We can't wait!

Simi's doing great. He'll do better and better with each passing day. And I think getting away from doctors and nurses will do him a lot of good emotionally.

OK, from here, the postings will be sparse until we return home. Thanks again for all your prayers, calls, and good wishes. We really appreciate them.

Until soon...

Boston Children's Hospital

I can't believe I've been forgetting to mention what wonderful care we're getting here at Boston Children's. I'm so incredibly glad we chose to come here to fix Simi's heart; I can't imagine a better place. The surgeon did a great job; he truly is a miracle worker. The surgical team took great care of Simi during the operation. The surgical liaisons did a great job taking care of us during the surgery. And all the nurses and doctors on the floors are just incredible. It's because of them that Simi has healed so well. I'm forever indebted to them.