Tuesday, May 30, 2006

Memorial Day...

On Memorial Day we went over to Grandpa Bob's new house for a cook out. They have a swimming pool and believe it or not it was so hot out yesterday Jack and Jason were in the pool! They didn't last long in the water because it was SO COLD!! Even though Jack was freezing he wanted to stay in the water!

We were sitting in the sun to warm up when Jack asked for something to eat. They had just put the burgers on the grill so we went over to the picnic table to scope out anything we could pick at. Jack saw the chips and nearly dove into the bowl...we had a seat at the picnic table. Now normally Jack would be in a high chair or on my lap but he's such a big boy now and wants nothing to do with mommy's lap so he climbed off and sat next to me. I was so proud at how well he was doing and he was so happy to be eating from his big boy plate at the big people table! I turned my head for one second to say something to someone and all of a sudden I hear everyone GASP! Jack is in mid air falling head first to the CONCRETE...he landed with an awful splat and I was terrified. I couldn't move. Somehow I leaped over everything and everyone and picked him up. He was too shocked to cry...but then he did let it out. He was screaming and Jason came over and took him from me and went in the house to take a closer look. He had cut his ear and there was a pretty gross bruise on the left side of his head (opposite of his shunt, thank GOD). We tried to ice it but that only made him cry more.

He was acting okay, but we decided to take him to the ER to have him examined. We chose HMC because his neuro and neurosurgeon are there and they have his records along with a previous CT scan to make a comparison. There were quite a lot of trauma victims coming in through Life Lion and ambulance so we had to wait several hours. The doctor and nurse were both VERY nice and even though we had a bed in the hallway we totally understood that others needed things first. They gave Jack Chloral Hydrate to knock him out and they did a CT scan. We waited for about an hour for the results — they were totally normal. No fracture and no enlarged ventricles or other damage. We had to wait for radiology to confirm what the attending read — so that took another hour or so and then we were discharged! So we spent our holiday in the ER.

He’s doing well this morning — but I am keeping him home from school just to keep an eye on him. He doesn’t seem to be in a lot of pain so I am taking that as a good thing. I’ve been giving him Tylenol so that should help too. I am going to take him to the ped to check him out later this week.

He's napping right now and I keep checking on him...he must just need his rest today. I'll keep you all updated on how he's doing!

Thursday, May 25, 2006

Monday, May 22, 2006

April and May Pictures!

Jason found the cable to connect the camera so I finally got April and May's pictures online! Check them out -- Jack's Photos You may have to hit refresh to see April and May.

Jack has off from school this week but it's still a very busy week...We started our additional therapy at the outpatient center and we return to CHOP on Wednesday for a follow up appointment. Therapy is going well and Jack is already comfortable with his new friends.

He's got another cold right now so he's taking it easy this afternoon -- poor guy can't get rid of these colds this year!

Thursday, May 18, 2006

They All Fall Down....

Jack's school put on a little graduation program at school today! They've been practicing for several weeks and we had to bring in beach themed items for them to use. I was so looking forward to it! My mom, Paul, Ryan and Shannon went with me this afternoon.

We were gathered in our seats waiting for the kids to come in...they all filed in one by one some in standers, some walking, some in wheelchairs and I was waiting and waiting for Jack. Finally I see his little blond head strolling along with his walker. He gets into place and they start the first song. Not two seconds after they start Jack takes a HUGE FALL backwards and hits the ground pretty hard. He BAWLED through most of the program. I think the crowd scared him because normally a fall like that would not have upset him that much. He's rarely cries when he falls. I felt awful!!

The teachers came over to us afterwards and apologized -- it wasn't anyone's fault and I am not upset with anyone, just upset that it happened. The other kids did so well, they sang and danced and did signs and gestures for all of the songs. I don't have many pictures -- but I did manage to snap one right before the fall! As soon as I can find my cable for the digital camera I will upload them for you to see.

jack was happy to see us and calmed down towards the end of the program and enjoyed some punch and cookies with the family and his friends. He has off all next week and then goes back after memorial day...I don't think it'll stick with him...

I am just so sad that it had to happen at that moment :(

Friday, May 12, 2006

New Photo Album...

I have been working on a new photo display for Jack -- you can check it out if you'd like!

Jack's New Photo Albums

It's a work in progress and as soon as I can find that little dohicky thingy that connects my camera to my computer I will have some long awaited new pictures for all of you!!!

Good night!

Friday, May 05, 2006

Dancing Dreams

With its practice bar, mirrored walls and lush orchestral music, the small dance studio in Bayside, Queens, seems like countless other ballet schools that nurture the dreams of little girls.

Parents peek in from a crowded waiting room as a patient teacher demonstrates first-position to little girls proud simply to be wearing tights, tutus and ballet slippers.

But this studio holds one special class a week for dancers whose movements do not exactly exhibit the refined control of a prima ballerina. There are no lithe leaps, perfect pirouettes or pointed toes here. Most girls cannot walk or stand, much less make a shallow curtsy. Their crutches and walkers lie nearby and their customized ballet slippers are stretched over leg braces.

The eight little ballet students, who have cerebral palsy and other debilitating physical conditions, are assisted in class by teenage volunteers with strong healthy bodies and infinite patience. The teacher is Joann Ferrara, a physical therapist who owns and runs Associated Therapies, where most of the girls go for treatment.

Even at a tender age — the girls range from 3 to 7 — they grasp that they will never romp in a playground or flip onto a gym mat, let alone play hopscotch, tag or hide-and-seek. But being little girls, they are not immune to the dream of being a glamorous ballerina swathed in frilly pink, gliding gloriously on a stage in front of everyone.

"Every little girl wants to be a ballerina, and my daughter wanted to know why she couldn't," said Maria Siaba, whose daughter Veronica, 7, is in the class. "I would bring her into a ballet school and they said, 'We can't accommodate her.' Outside, I'd have to explain to her that she couldn't do what all the other girls are doing."

For an hour a week, Veronica and seven other girls from Queens escape a world plagued by awkward physical motion and enter a room where elegant music is played and they get a taste of movement that is graceful, smooth, supple and refined. Ms. Ferrara teaches only the basics of ballet. The girls do not perform full pliƩs or pirouettes, and they are lifted for leaps. While she coaches the girls to lower and raise themselves and turn slowly, Ms. Ferrara constantly reminds them to smile and "be proud."

And even if the limbs do not obey, the dancers have absorbed the traditional ballet ethic of disciplined hard work. One day all too soon, they will leave their ballet lessons behind and will work simply to stand or walk or move without being too ungainly.

"I just want them to feel the sheer joy of moving and to be proud of themselves," Ms. Ferrara said. She began the dance class three years ago after hearing repeated laments from the families of girls she treated. "The parents all said their daughters wanted to take ballet like all the other girls, but no ballet schools would accept them," she said.

She recruited a group of teenagers to assist the dancers and paired them up. Most pairs have been together ever since. When Monica Chaffardet, 5, began the class, her left side was so weak that she was barely able to use a walker. Heather O'Halleran, 16, of Flushing, has been so persistent with her that Monica is just about ready to stand with the use of a cane, and doctors hope that she will walk one day without any help.

"She's dying to walk," Ms. Ferrara whispered the other day in class as Monica danced to her favorite ballet, "The Nutcracker."

Monica's mother, Joann Chaffardet, said: "She'll never be a prima ballerina. This isn't about that. She just wants to be like everyone else. She doesn't see the difference. When she saw her cousin, who's the same age, taking ballet, she kept saying she wanted to do it, too, but the schools said it was an insurance risk to take her.

"We all know these girls are different, but this is to help them get up there and be like the other girls. Even if for a short time, they're up there feeling like real ballerinas."

Sophia Clarke, whose daughter Jessica is a student, said the class had helped Jessica's self-esteem. "I never thought I'd say, 'I'm taking my daughter to ballet class,' " she said. "I could never put her in a regular class because she falls easily and no one has the patience for her."

The girls had their annual recital last Sunday in the auditorium of the Mary Louis Academy in Jamaica Estates. Backstage, assistants were pulling ballet slippers over the bulky plastic sheathing and hinges of leg braces, and helping the girls put on white tights and pink tutus. Pink fuzzy tiaras were adjusted and pink tambourines and fairy wands were distributed. The dancers were bursting with excitement as they checked their makeup and hair in the mirror.

Monica resolved that during the recital she would try to stand for the first time in front of her dad, John Chaffardet, who was in the audience.

Veronica sat in the lap of her helper, Christina Arfsten, 16, of Flushing, and said her favorite ballet was "Swan Lake" because "it's about a girl who works very hard and never, ever gives up."

She continued: "Ballet made me realize I can still do stuff that other kids can do. It's a great opportunity to do something new and keep trying and realize you can do something you thought you couldn't do. Even if you feel scared, it's the same for anything: If you don't try, you'll never know what you can do."

The recital show, called "Wishes and Dreams," featured the dancers of Associated Therapies performing to excerpts from "Swan Lake" and "The Nutcracker." The girls stood in a line onstage, supported by their assistants behind them, lifting and turning them to the music.

The audience included some of Ms. Ferrara's other patients, who watched proudly and shed tears of pride, not pity. For the finale, "When You Wish Upon a Star," the dancers held shiny paper stars. When the music stopped, Jessica held hers aloft and yelled, "Yea, we did it."

The audience bathed the girls in cheers as Ms. Ferrara handed each ballerina a red rose. Monica held her rose in one hand and used the other to steady herself with her ribbon-wrapped cane. Heather gently released her and beamed as she stood by herself, held up by applause and her father's quivering smile.

Published: May 5, 2006

Wednesday, May 03, 2006

We're in!

Jack had his Botox injections done at CHOP last week. He was such a good boy and a major trooper all day! They did 4 injections in his right arm and 4 in each leg as well. We got there right on time but had to wait on the sedation unit because they didn't have a bed available. Once we were called back we didn't really know what to expect. A nurse came in and explained that they were going to be examining Jack closely to mark the injection sites. Jack got to wear a cool kids gown with trains all over it. The dr. came in and used a black sharpie marker to put the dots on Jack's arm and legs. He also put EMLA cream (a numbing cream) on the sites and placed medical tape over the cream. They started an IV on Jack and hooked him up to monitors to watch his vitals. Then they explained that they were going to give Jack two medications (versed and fentenol) to put him in a "twighlight" state. When they gave him the versed Jack started laughing and giggling -- which in turn made all of us laugh. We had to wipe tears from our eyes -- it was sooo funny! Jack handled the injections very well. He was awake and crying, but we could tell it wasn't hurting him as much as if he weren't doped up. Jack needed a bit of oxygen but only for a moment every now and then. When it was all over they watched Jack for a while and the medicine was wearing off a bit, so they gave him a snack and some apple juice and since he did well we got to go home!

They said we'd notice the full effect of the Botox in about a week. Already we notice his right hand is open and loose!! His legs are nice as well. He's using his walker with more ease and overall it looks great already and it hasn't even been a full week. We go back to CHOP for a three week check up this month. I am sure they'll be pleased with the results.

The move went smoothly -- we're pretty much settled in with some rooms more complete than others. Everything is unpacked and put away and now we're working on decorating and arranging furniture. We LOVE, LOVE, LOVE our new house. It feels wonderful to say that! Jack loves it too...we have a great back yard with a swing and Jack loves to crawl in the grass!

I hope to get some pictures online soon! I'll be sure to post them when I do.
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