The Bad Haircut

Simi just got the worst haircut on the planet.

Simi and Asher have been in need of a hair cut for a while now. With all the extra stuff going on during the holidays, I haven't had a chance to make an appointment where I normally take them. Simi's hair is so long, it was in his eyes. So, a few days ago, while Simi and I were out running errands, we found ourselves near one of those "no appointment needed", "walk in and get your hair cut for cheap" places.

"Simi", I said, "Would you like to get your hair cut while we're here?",

"No" Simi replied. "I like it just the way it is."

"Come on, let's get your hair cut. You need it." Into the store we went.

The stylist asked how we wanted it cut. "A trim", I said. "Just keep the same shape but make it a bit shorter." To my horror, she got out the buzz cutter and started shaving Simi's head. As I was watching the "hair stylist" do her thing, I was reminded of all those horrible haircuts I got as a child. I'd ask the hair stylist for a trim and I'd walk out with the shortest hair imaginable. I remember crying and crying and crying after each terrible hair cut. And here I was, inflicting the same sort of punishment on my own child. I cringed with each stroke of her hand.

As I was watching, I kept thinking that perhaps it wouldn't look so bad, that the change in hair styles might be a refreshing one. Wishful thinking, perhaps, but it wasn't meant to be. It really and truly is a crappy haircut. Deep, deep sigh.

I'm pretty sure we won't be going back there.

At least Asher escaped the trauma. I'll make sure to take Asher to our regular hair stylist.

The Little Chef

Asher loves to cook. Not surprisingly, he identifies with Remy, the chef rat, in the movie Ratatouille. He walks around saying, "I'm the little chef. You can call me Remy." To which we sometimes reply, "OK, Remy, go make a pee-pee on the potty before you go off to bed."

Since Asher loves to cook so much, we decided to make some allergen-free cookies and bring them to the local Ronald-McDonald house. There may be some children there who have food allergies and may appreciate having cookies made for them.

So, off we went to make cookies. Asher and Simi both participated. Raj created the recipe. I still can't believe that Raj figured out this simple yet delicious recipe. Rice is the main ingredient: rice flour, rice milk (cooked rice processed and filtered), sugar, potato starch, canola oil, and water. Oh, and a bit of Featherweight (corn-free, aluminum-free) baking powder. Mix it together, drop bits of dough on a baking sheet, stick it in the oven for 18 minutes or so and ...voila, you have some delicious Asher-safe cookies. I sincerely mean it that these cookies are quite delicious!

Once the cookies were made, we put them on a paper plate, covered them with plastic wrap, and went to deliver them to the sick children. Asher was a little sad that we couldn't keep them, but was very excited at the idea of giving them to children who need them more than he does. So, then, off we went.

We didn't get to meet any of the children who were staying at the RMH, but we were still very happy at the idea that they may enjoy the cookies. And we can't wait to do it again sometime soon.

Tea Party

Leila received a tea set from her aunties this year. So of course we had a tea party! Among the invitees were brother Simi, cabbage patch baby, Simi's puppy, Simi's baby sister doll (which we got him before Asher was born to prepare him for Asher's impending arrival), and me.

I poured the tea. Leila drank rice milk in her tea cup and ate potato chips. I drank make-believe tea from my tea cup. Simi drank orange juice from his tea cup and used the saucer as a tiddly wink. Leila fed her milk to the dollies. I cleaned up the mess. Asher joined us for the last bit of tea, then they all got up, threw their tea cups on the floor, and walked away to watch a movie.

I can't wait until the next tea party!

Twas a Jolly Good Christmas

For me, the best part of Christmas is seeing the children's faces on Christmas morning. The past few years, it's been the same: Simi and Asher run down the stairs and into the living room to look to see if Santa left them presents. The looks on their faces when they see the presents under the tree says it all. Then, Simi runs into the kitchen to see if Santa ate any of the cookies we put out for him (he always does, that Santa) and then immediately runs over to the window to check on the carrots we leave out for the reindeer. Excitedly, Simi jumps up and down that all the carrots are gone too! The reindeer ate them all! This is my favorite part of Christmas.

This Christmas, I barely managed to keep Simi and Asher from ripping open their pressies until Raj had a chance to wake up and join us all... Then, they were quickly into their task at hand...

Without a doubt, Asher's favorite Christmas present is the violin Santa brought, followed closely by the Orange Power Ranger transformer sword (he transforms into a sword AND an orange power ranger!). Asher takes out his violin and plays and plays and plays. It doesn't matter to him at all that he doesn't know how to play it. I'm impressed with how well he holds it and handles the bow.

Simi hasn't shown a distinct attachment to any one present. He loves the LeapFrog Leapster games he received, especially the Spiderman game. Both boys love the Hot Wheels 4-Way Racetrack toy.

Leila was very happy with all her toys. She got really into it and ripped the wrapping off her presents. Nobody seemed to notice that most of her toys were toys given to her brothers in Christmases past. She did get a few new things, like the cabbage patch baby which she seems to love. Her affection to the doll surprised me; she has shown only disdain for dolls in the past.

This year, it was harder to get the children to stop playing with their new toys long enough to sit down for breakfast than it has been in the past. Then, the little ones go upstairs for their nap, then off to visit the grandparents...for more Christmas fun....

Christmas is over way too fast...

The Leila

It's been a LONG time since we've had a Leila update. The hazard of being the third child; I can relate!

Leila's daycare room had their holiday party yesterday. Leila wore one of her favorite holiday dresses - a pink velvet one with fake fur around the wrists and neck with matching pink nappy cover. She was thrilled that she got to wear her white tights and black patent-leather shoes. She loves those shoes. She can barely walk in them (I think they may be a little big for her), but she insists on wearing them to school every single day.

Leila is speaking in full sentences now. She says, "I love you, mommy". She also says, "Eat, Simi!", which is usually screamed out at the top of her lungs. I think she's heard me and Raj say that a few thousand times... She says a whole lot of other things.

Yesterday, she said she wanted a yellow candy cane. I handed her the box and asked her to pick out the yellow one. So she did!

Letters to Santa

The boys wrote their letters to Santa this week-end. You know the letters; the ones with the wish list of toys they want to receive. I need to make a mental note to myself for next year to get them to write their letters to Santa BEFORE I do their Christmas shopping!

Simi can write his own letters now, without any help. For Asher, I wrote the word in dashed lines and he traced them.

The interesting thing about the letters is that Simi asked Santa for items for Asher. He wanted Asher to have a dinosaur.

Later in the day, while they were in the car, Asher asked Simi to ask Santa for a violin for him. He wants it so bad that, even though it's on his own list, he hopes Simi's second request clinches the deal. Too cute. We better get that violin!

Simi wrote a separate note, reminding Santa not to forget the wrapping paper. I'm grateful for that note, because I HAVE forgotten to get some. Doh!

Bravo Simi!

Simi participated in his first violin recital. He did GREAT! I'm so proud of him on how well he did and how much he practiced for his special day.



Most of the students of this violin teacher participated in the recital. It was really neat watching everyone perform at their particular level of skill. And watching the violin teacher interact with each student was also very heartwarming. She's very good with the children.

Asher's so excited; he really wants to play violin. So after the recital, he and Raj went to the violin store to be measured for his own violin (Simi's violin is too big for Asher). So now that he knows what size he is, he knows what to request of Santa (wink).

Asher Update

Every time I begin to write an update on Asher, things change. It makes it very difficult to write an update on him!

We have decided to take a different approach to treating Asher's EE. We have tortured him with the elemental formula and food trials with the idea that if we can identify the foods which cause Asher the allergy, we can avoid those foods. That way, he can stay drug/steroid free and live a healthy life.

Thing is, Asher is allergic to A LOT of foods. So much so that feeding Asher a balanced diet is next to impossible. The elemental formula, which was designed to be a short-term thing, appears to be a permanent thing. I wouldn't wish anyone to drink that yucky tasting stuff on a long-term basis.

Plus, this drinking yucky tasting formula and eating only a few foods takes a HUGE toll psychologically and socially. It's really been H*ll for the kid.

We also know that before we started with all this elemental formula and food trials, Asher was on a very small dose of Flovent and a restricted diet. The diet was still rich in foods and that tiny dose of Flovent was almost enough to clear up his esophagus. Raj and I feel that with an increased dose of Flovent, Asher can have a wide assortment of foods and have a fine quality of life.

And the drugs: we still had to give them to Asher to protect his airway from an asthma attack. So he wasn't able to be drug-free.

So.... if he has to take medication for asthma, we might as well let him swallow the Flovent (vs. using a spacer and inhaling it) so that it can protect his esophagus as well as his lungs. It just seems ridiculous to me to give him a drug which could help his EE and give it to him in a way which doesn't help his EE at all. Like, what's the point of that?

We increased his dose of Flovent and now we're letting him swallow it to help his esophagus. We also had to remove all the foods from this last trial, unfortunately. So, right now Asher is eating only four foods: pork, broccoli, rice, and potato. I'm amazed at how well he's handling the set-back.

I know we have to let his esophagus heal for the next three months, then scope again in March or so. But then I'm not sure what the plan is to introduce additional foods. As soon as I know, I'll post it here.

Asher is feeling a lot better. I'm hesitating because there's something going on which I don't really understand. And truthfully, the only thing I really fear is the stuff I don't understand. So...this scares the sh*t out of me.

Asher's been limping. The limp got worse right after the last scope. The thought is that it's due to his immune system being on overdrive, which is causing the limp. We started giving him the Flovent, and he began feeling better and his limp went away. I breathed a sigh of relief, thinking that the worst was over.

Suddenly, the Sunday after Thanksgiving, the limp returned. I don't understand why, since nothing really had changed, to my knowledge. But there it is, a serious, debilitating limp.

The limp is less now, but it's still there a bit. More importantly: Asher's body definitely doesn't work the way it should. He has a difficult time turning his body and moving it. It takes him a lot of effort to move his body in a way that most people don't even think about. It kills me to watch him struggle like this and I'm not sure what's going on to cause it. Like I said, the thing I fear most is what I don't understand.

So, there it is: a mixed bag. I wish I had something better to report.

More Simi Update

Simi has also begun violin lessons and is preparing for his first violin recital. It will take place this week-end. How exciting!

Simi Update

Simi is in a K/1 combination class, where 9 of the children in the class are in kindergarten and the remaining 10 are in first grade. This is an ideal classroom for Simi and I was thrilled at the thought that he would be in this room for two years - through both kindergarten and first grade.

From day one, Simi has been working with the first graders. So it was no surprise when he brought home his first report card and it showed he was working above grade level in every item. The lowest "grade" he received was a "satisfactory" in music and art classes. I can't remember what he got in Physical Education (gym class); perhaps he got a satisfactory in that too.

About a month ago, I had my first parent-teacher conference with Simi's teacher. Ms. Teacher and I sat down and she began to describe how she tested Simi in his reading and math skills. Her description of the evaluation seemed very logical and thorough and fair. Turns out that Simi is reading on a mid-second grade level (level 24?). He has surpassed all the books in the room, so she had to go to the 2nd grade classes to get some books for him to read. So now, for homework, the kid brings home a 2nd grade level book, along with corresponding questions to answer and reports to write. Right now, my kindergartener is reading about Abraham Lincoln.

Next, Ms. Teacher dropped the bomb: if Simi were to stay in her room next year, it would be a complete review for him. He would be bored and may become a behavioural problem in the classroom. She recommends that he go into a different first grade classroom - of this one particular teacher who takes a project-oriented approach. The school year is divided into quarters. In one quarter, for example, they will look at chicken eggs and watch them hatch and grow. Then everything they do revolves around that project. They'll do reading about chickens and eggs, math about the number of chickens, eggs, etc. And so on. And they do it on their own level.

I asked Ms. Teacher about having him tested so that perhaps he could just go straight into second grade; she didn't recommend that. Simi is slightly built, skinnier than a toothpick, and cries at the slightest thing. She said that as children get older, they get meaner and it would be better emotionally and socially if Simi were to stay in first grade next year.

So, I'm a bit nervous about all of this. I don't like the idea of him "repeating" first grade, particularly since he is already working on a second grade level. I can only imagine how boring it would be for him. On the other hand, staying with his age group is a good thing. Is it possible they could challenge him enough to stay engaged in school?

Then, on Friday, I took him to his first gym class. I signed him up for the Kindergartener class because, well, he's a kindergartener. The next level up is the first-6th grade boy level. After the class, the teacher comes up to me and tells me that he's already ready for the next level. Sigh....

So...if you have any suggestions on what to do for this kid for next year, please let us know.

Happy Chanukah

Chanukah snuck up on the HinJew household this year. Luckily, we realised it was the holiday BEFORE it actually began - phew! We've been lighting the candles and reading the story of Chanukah each night. The boys are crazy about the dreidle game.

Now, if someone could suggest a good way to explain G-d to the children. Good golly, that's a difficult one!

Like the good HinJews we are, the children get one present for Chanukah, and then Santa puts the rest under the Christmas tree. Many years ago, some friends of ours from Boston turned us onto the holiday Hess vehicles. These things are the best toys around; our children just love them. This year, the Hess Monster Truck was the Chanukah present - for all three children. Simi proclaimed it was the best pressie - EVER! Leila had a great big smile on her face as she vroomed her truck around the kitchen. Asher was equally happy playing with his.

Hopefully soon we'll get a chance to buy and decorate the Christmas tree...

Extreme Home Makeover

So much to share with you...so much to say....

The first thing I'd like to share is about tonight's episode of Extreme Home Makeover. Every Sunday, this show has me in tears as I watch hundreds of people come together to create an amazing home for a deserving family. Tonight's episode hit closer to home when Ty and Company built a house for a family whose four children have the same disease as Asher. Good golly, I haven't cried like that in a LONG time!

Here is a link to some information on this episode. Here is an article from the local paper.

Normally, the family goes on vacation while their house is being rebuilt. In this case, the family chose to go to the Children's Hospital of Philadelphia to consult with the specialists there on EE.

Thank you, Extreme Home Makeover. I'm completely humbled by the work you do and how you change people's lives. Thank you.