Halloween 2006

And now he's five. Today is Simi's birthday. The four days of birthday celebration ended today.

The boys got to wear their Halloween costumes to school today. Asher was so excited, he tried to wear his costume to bed. He was Spiderman today. Simi was also excited and couldn't wait to be Batman. Their school hosted a Halloween parade, which was more for the parents than anything else, I think. The children paraded around the circle in front of the building in their adorable costumes while the parents watched, cheered, and took video clips and photos. After the parade, we went inside and did some trick-or-treating and had a party.

Asher's room was particularly sensitive to Asher's allergies. For the trick-or-treating, each parent brought in one small treat for each child in the room. I brought in "Asher-safe" candy and each parent who gave candy (some gave non-edible treats, such as glow-lights or pencils), was given an "Asher-safe" candy to give to Asher. Asher had absolutely no idea that he was getting something different than the rest of his class. It was his first real trick-or-treat experience and he was thrilled.

Raj and I showed up at the end of the boys' lunch to celebrate Simi's birthday with song and cookies. Asher joined Simi's table and shared in the festivities. Then, at the end of the day, we went trick-or-treating. The boys looked absolutely adorable dressed in their superheroes outfits and went up and down the block in search of candy. Asher, especially, thought this trick-or-treating thing was a great idea. Simi tried telling the folks giving candy that Asher couldn't have those treats; he was allergic to them. Once home, we exchanged all the toxic candy that Asher collected for some "Asher-safe" stuff. Thankfully, Asher's a good sport about this stuff; Phew!

Then, came the difficult part; getting Asher to remove his Spiderman costume. He wanted to sleep in it.

And now my Simi-boy is officially five years old. Where DOES the time go?

Simi, Asher, and Leila

When Asher was born, Simi was 23 months old. While Simi was thrilled to hear that he had a baby brother, he didn't interact much with Asher until Asher was about 2 - old enough to be a playmate. Of course, now, the two are inseparable.

Asher was the same with Leila. He was 28 months old when Leila was born. The way that Leila's birth really affected Asher is that there was less parental supervision, which means that he could get away with more stuff. He hasn't really interacted with her or even noticed that she was around.

Simi, on the other hand, absolutely LOVES Leila. In fact, the challenge is to keep Leila safe from Simi, since he doesn't exactly understand the meaning of "Please be gentle, Simi". He hugs her and plays with her and makes silly faces at her to get her to laugh and brings her toys. They have a special bond and it's entirely because of Simi's efforts.

But now, it's almost like a lightbulb went on in Asher's head. It's like his eyes opened and he noticed that Leila is in the room. Now, the past week or so, Asher has noticed Leila and gone to hug her and touch her and bring her toys. Now that he's three, perhaps, developmentally he's ready to interact with her.

Online photo album

Liz has been putting together some picture books, I've taken one of them and uploaded the pictures. I've put in a few captions, and may put in some more.



Asher Age 2 to 3

Simi's Scar, One Year Later

Here are a couple of pictures of Simi now, one year post surgery. You can't really see it in the first one, the second one is bit closer. 

Ugh!

This is Liz speaking. I need to tell you: Seeing those pictures brings me right back to surgery time again. I feel all those emotions just like I felt them a year ago. Ugh! I am SOOOO very glad that we are on THIS side of the surgery and now Simi's fine and we never have to think about it again. Simi DOES have his one year check-up, which is scheduled for some time in December. But that's no big deal. Phew!

Raj and I mentioned the anniversary to Simi. He mentioned that he has memories of Boston. He remembers parts of the hospital visit: making a building with me with the cardboard "bricks" in the play room (which happened before the surgery), playing with cars with me in the play room (which happened the night before he was released), watching "A Bug's Life", and Raj sleeping with him (although it was actually me who slept with him). When asked if his memories were happy or sad, he responded, "happy". I'm 95% sure that he doesn't remember the surgery. I remember Dr. Breitbart saying something about the pain medication they give the children helps them "not remember" that day. That's nice. I remember bawling my eyes out that entire day and just thinking about it brings back the anxiety I felt - in full force. I've somehow managed to keep that anxiety away from Simi, and we managed to fill his "adventure" with fun and love and that's what he remembers. Phew!

Raj took a photo of Simi and his scar and will post it as soon as he can. In the meantime, I think I'm going to write and write and write and push those pictures WAAAAY down to the bottom of the page.

Simi's Scar, one year ago

Here area a couple of pictures of Simi after the surgery last year. The first is still in the hospital, the second back at the apartment and in much better spirits!

-raj 

Simi and Dr. Pigula, one year ago

Here's a picture of Dr. Pigula talking to Simi the day before his open heart surgery. We didn't post any pictures of the trip last year, so I (Raj) am going to post a few of them now, one year later, and here's the first. Dr. Pigula was the surgeon and was wonderful. 

This Time Last Year...

This time last year, we were traveling to Boston to get Simi's heart fixed. I remember the caldron of emotions that engulfed me during that time. All those emotions come bubbling right back up to the surface like it was happening all over again.

I'm so glad we're on this side of the surgery.

Simi's doing great. He's still nursing his broken arm. He's still thin, although not as "concentration camp victim" thin as he was last year. He's much bigger now.

More later; I'm beat.

Celebrating an Anniversary

On October 6, 2005, almost exactly a year ago, Simi had his atrial septal defect repair. We call it "Our Boston Adventure" since the repair was done at Children's Hospital Boston and since we worked on putting fun into the experience. Mission accomplished. The stuff Simi remembers are the fun parts - like going to the aquarium and seeing the Wallace and Grommit movie. The only residual from the repair is a thin, silvery scar down his chest and a HUGE fear of medical procedures.

One of the highlights of our Boston Adventure was picking up acorns in the park across the street from our temporary Boston apartment. We also picked up acorns at the follow-up cardiology appointment here in Raleigh. Kelly Kunkel, a good friend of ours, suggested we plant the acorns. Surprise surprise - they grew! Now, to celebrate the anniversary, we planted the little oak trees outside.

Now let's hope they grow into big, tall oak trees that are as strong as Simi's heart.

The Arrival of the Monsters

Asher is now three. As if on cue, he has begun to fear the monsters. At least we know that developmentally speaking, he is right on schedule.

When Simi began to fear the monsters, we hung a small dreamcatcher on the wall and we told Simi that it keeps the monsters away. When this "key", as Simi calls it, is on the wall, no monsters can enter the room. Armed with that knowledge, Simi breathed a huge sigh of relief and has never worried about monsters again. Simi does remind us to bring the "key" on vacation with us, to make sure that no monsters enter our vacation home.

So when Asher began to fear the monsters, I brought him into the bedroom that he and Simi share and I pointed to the "key" on the wall, explained its purpose, and hoped that the dreamcatcher would work for Asher too. So far it seems to have done the job. Asher and Simi's bedroom is still a monster-free zone. Phew!

And Now He's Three

Today is Asher's birthday. We've been celebrating for a week.

Our birthday celebrations began last Thursday evening when I took him to Toys R Us and told him he could pick out one thing for his birthday. You should have seen his eyes and face as he went from item to item, checking each thing out. In the end, he chose Superman walkie-talkies with night vision. They fit on top of the head (hands free) and he and Simi talk back and forth in them. I'm not surprised that he picked out a gift that both he and Simi can play with together; it's quintessential Asher.

On Saturday, I brought out a Spin Art, which the boys absolutely loved. It made for a very special day. Then in the evening, Asher went to his grandparents house and got spoiled by them and his aunties.

Sunday he got spoiled some more. His big party was at The Little Gym where he got to play with all his friends. And, of course, we have been making a very big deal about him every single day.

Today is his actual birthday. We had yet another birthday party for him - this time in his classroom. We wore party hats and blew noise-makers and sang party songs. I think he had a great time.

It felt great to spoil Asher like we did. Asher is such a quiet, easy-going child that he often gets overshadowed by the outspoken Simi and Leila. Plus, he's gone through some very difficult moments with all the medical testing. He, more than anyone, deserved some special attention.

And now he's three.

Our First Broken Bone...

...belongs to Simi. Simi broke his arm. He was playing at a birthday party on Saturday and he fell down on it wrong. He fell on a well-padded mat and it seemed so slight an accident that we thought it may just be bruised. So we waited to see if it improved or got worse. Sure 'nough, it got worse. Simi got an x-ray, which was a lot of fun, then a cast. Then reality set in when he realized what a pain in the butt it is to have your arm in a cast. Hopefully, the cast will come off in time so that he can celebrate his own birthday without limitations.

Introducing Simon

At Simi's pre-school, the children in their last year of pre-school get to take French lessons. The day Simi started his French lessons, he excitedly told us about it in the car on the way home. He takes French every Monday, Wednesday, and Friday and each day he tells us about French. But when we ask him what he's learned, he tells us about the sticker he got, or about playing "eeny-meeny-miny-moe". The only thing he ever says in French is that his name is Simon (pronounced something like, "See-mo", with a long o).

Today, the French teacher, Ana, returned my telephone call. We had a great chat about what he's learning in French and how he's doing. Armed with a few vocabulary words and a song, I started saying these French words to Simi (aka: Simon) in the car on the way home today. Suddenly, Simi starts saying these words too! And then he breaks out in French song! And he even sings "eeny-meeny-miny-moe" in French. The kid has been holding out on us!

So, Monseiur Simon will be learning a bit of French at home too now.

What Makes Asher Happy

Yesterday, Asher and I had lunch together at his school. He looked rather pensive.

"Asher", I asked. " Are you happy or sad?" This is a version of a question he often asks of others.

"I'm happy", comes his reply.

"Asher, what makes you happy?" I asked.

"Spiderman. Buzz Lightyear. Superman. Power Rangers. But not the Green Goblin because he's a bad guy."

So now we know.

Endoscopy Results

Raj and I had a chance to talk with Asher's doctor in Cincinnati. He gave us the results of the biopsies taken during the endoscopy. While the eosinophil count is definitely worse than before, it's not as bad as it could be. In fact, the actual number of eosinophils per area is the same as before (24), but before it was focal, meaning that it was spotty in places. Now it is diffuse, meaning that it's all over his esophagus. So it's definitely worse than before, but not as bad as it could be. OK.

Then we talked about next steps. We have two options: 1) we can increase Asher's dosage of Flovent and go back on that to get rid of the eosinophils or 2) do an elemental diet and see if the eosinophils go away. If they do, then it's diet related and we can incrementally add foods back into his diet one-by-one.

If we choose the Flovent/steroids method, then we're committing Asher to long-term, possibly permanent steroid use without the option of avoiding the stuff to which he's allergic. If we choose the elemental diet, we commit Asher to a 10 week liquid (formula) diet at a time where he's not likely to remember it in years to come. Then we can determine the items that cause the allergic reaction and avoid those -- and possibly keep Asher off steroids. While it may be difficult in the short-term, the elemental diet sounds like a better option in the long term. So that's what we hope to do.

I can't even imagine how hard it's going to be to have Asher drink a formula for all of his meals - for 10 weeks. Of course it comes at the absolute worst times - over his birthday (no birthday cake for him) and Thanksgiving holiday. Ugh.

I need to share something else. During our call, I had asked the doctor if the biopsy slides from the endoscopies performed here in NC had been read by the pathologists in Cincinnati. We had sent the slides there before Asher was first seen in Cinci. Sure enough, they had been read and the very first biopsies revealed eosinophils. They didn't catch it here in NC. If they had, we could have gone to an elemental diet at the age of 9 months, where drinking formula is the norm rather than now when it's difficult. We would have been two years ahead of this game rather than watch Asher suffering like he is.

Back from Cincinnati

Raj and Asher returned safely from their trip to Cincinnati. When they arrived home, it was nearly midnight on Friday. Asher was asleep (thankfully). It had been a long two days for them.

Asher has been even more of a goofball now that he's home. I think he's so happy to be home. He's been very clingy to me and extremely goofy in general. It's so good to have him home.

We'll know more about the next steps with his ee after we talk with the doctor, which will hopefully be on Tuesday.

Asher Update - Results of First Three Months

Part of this Weblog is to chronicle Asher's journey through eosinophilic esophagitis, for those who are suffering from the same illness. This journal entry is an update on Asher.

About three months ago, we took Asher to Cincinnati Children's Hospital for help with his eosinophilic esophagitis (ee). We learned that even with restricting his diet and giving him Flovent, he still had mild ee. We tested him for allergies and restricted his diet even further. We discontinued the Flovent and waited for three months to see the results.

The results are nearly in. Today was Asher's follow-up endoscopy at Cincinnati Children's. While the definitive biopsy results will not be in before Tuesday, preliminary results reveal that Asher's ee is worse now than it was three months ago.

We'll let you know the next plan of action as soon as we know it.

The Perfect Vacation

The perfect vacation has come to an end. Monday is back to reality. Deep sigh...

It all started when a friend of mine from the Dominican Republic sent me an email to say that she was going to be in the US for vacation. I begged her to come visit - so she did. She came for nearly a week. In honor of her visit, I took the week off work to be with her.

We talked about things to do while she was here. Turns out that all the things she wanted to do were kid-friendly. So the boys stayed home with us and we had a wonderful time playing. Monday, after I picked Nadia up from the airport, she and I went shopping. Gotta love that. Then Tuesday, we went to the museum to see the animals. They don't have lemurs in the DR, so that was a big treat.

Wednesday we went to the pool, only to find out that they changed their schedule at the last minute and the pool was closed. So we played on the playground then went home and jumped under the sprinkler. It was still fun.

Thursday we introduced Nadia to Duke Gardens. She got to feed the ducks and the fish and roam around the gardens a bit. Then, after lunch, we went ice-skating. Talk about hysterically funny. Ice-skating isn't a common activity in the hot tropics, so it was new to Nadia. It was also the first time that Simi and Asher went ice-skating. Simi did absolutely great. So did Asher, considering that he's two and this was his first time on skates. Nadia did fantastic too. After ice-skating, we were all exhausted and went home to rest. The boys took the longest nap of their lives while us girls hung out and chatted. It was awesome.

Friday, the boys went back to school and Nadia and I hit the stores once more before her trip home. And then the sad day came on Saturday, when Nadia had to leave us to return back home. Gosh, do I miss her.

Fallen Heroes?

I recently wrote a blog entry about Fallen Heroes. After writing that entry, some folks pointed me to some articles that explain Mary Decker's innocence. And now, I'm reading a lot more about Floyd Landis and his "doping" test results. Turns out that Floyd did not test positive for testosterone as the press continues to say. The test showed a high ratio of testosterone to epitestosterone. The testosterone numbers were normal; it is the epitestosterone levels which were too low. Epitestosterone is nothing; it's not a performance enhancement. It's also known that after efforts of extreme exertion, an athlete's epitestosterone levels would get extraordinarily low. Now, anyone seeing stage 17 of this year's Tour de France would agree that there is no effort any more extreme than Floyd Landis' win at Morzine on stage 17. So, it's really a no-brainer that his e level would be quite low after that kind of performance.

Again, the issue is that the t/e ratio was skewed by 11:1, but the actual numbers, the testosterone numbers, were in the normal category. Floyd Landis did NOT test positive for testosterone. That's a fact.

Perhaps my heroes haven't fallen?

Laughing Leila

I know I talk about Leila's screaming and her stubbornness. She also has this amazingly deep belly laugh and beautiful smile. Her entire face lights up when she smiles. And even though she's a teeny tiny baby, she has an amazingly well-developed, deep, belly laugh. That girl just loves to laugh.

This evening, Simi was playing peek-a-boo with Leila. Leila was sitting in her high chair and Simi was running behind her, then popping out in front of her. Leila absolutely loved it and let out this laugh that had the rest of us rolling with laughter. It was quite a treat.