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.