Sara Update 51 Banner Week!

Sara Update 51 Banner Week!

 Banner Week

Sara Ann had a banner week last week. Here’s what happened as posted in my journal: “Today was a banner day for Sara Ann. For the first time, she both drew and spelled words for us, without our speaking or spelling the words aloud for her. Sara’s teacher asked her what she learned in summer school. She drew waves. I said, ‘Looks like’ and I spelled out, ‘O C E A N to me.’ She began to write the letters I said…O C E A N. (It gets better)Then her teacher said, ‘Sara what else is under the ocean?’ With an orange marker she drew a circular blob. Teacher continued, ‘and what is that?’ (Neither one of us spelled or said this next word) She spelled out “F I S H”. (We were astounded.) I asked, ‘Is there anything else under the ocean honey?’ She drew a bigger blob. ‘And what is that?’ She wrote in our stunned silence, W H A L E.  Her nurse arrived. The teacher let me hold her hand so I could feel her making the writing movements for myself. I said, ‘Honey draw something else under the ocean for the nurse so she can see what you can do.’ She drew an even bigger blob and wrote again W H A L E.”

This was only her 2nd day of First Grade folks!!!!!

 3rd day of First Grade

The next week her teacher said, “Sara, I have a few questions I want to ask you.” She began a series of questions which Sara Ann answered with drawings and words. “What is your favorite thing? What is your favorite thing in the park? What do you really dislike? What do you want to tell mom?” For her favorite thing she drew a car and wrote above it CAR. For her favorite things at the park she drew a squirrel and wrote SWUIRRELS. Her teacher corrected her spelling.  I learned later that she’d been counting the squirrels with her nurse on their walks. She drew a long curvy mess of lines and wrote SUCTION. The thing she least likes is the suctioning of her secretions. She wrote that she wants Mommy to know LOVE YOU. Then the teacher said, “Sara I want to test your abstract logic. If there was one place in the whole world you would like to take Mom and Dad where would it be?”  She drew 3 stick figures in the ocean and she wrote OCEAN.  Then she said, “Well what do you want to do in the ocean?” She drew a boat and wrote BOAT. She said, “What do you want to do on the boat?” She added, “You can just write you don’t have to draw a picture.” She wrote LOOK and DOLPHINS (which she spelled correctly.) “And what do you wand for your birthday?”was the final question. DOLPHINS she scrolled again.  She wrote all of this for her first grade teacher for her 3rd day of first grade!! I grabbed the camera and caught a lot of it on video! If you want to watch it for yourself, I just posted the following on You Tube.

 In the new videos, her teacher is lightly holding her hand around the marker to keep it from falling out, while she is making the movements. These videos are all really short and inspiring. It’s amazing what a strong desire and giving someone the opportunity to try, can do… isn’t it? I’m still just dumbstruck. Her gaining more ability to communicate will completely change our lives!!!

 The Dolphins

We took her to Cape May to see the dolphins this past Saturday. It was very important to us that she know that she could have what she asked for. I’ve never seen her so excited about anything. She couldn’t go to sleep and was giggling all night. She giggled when she saw them too. There was a school of about 40 of them swimming and showing off around our boat. People were kind enough to clear a space at the railing so she could see. To them we probably just looked like the family with the little crippled girl. They didn’t know that this was a banner week! They had no idea that this little girl was getting what she wanted for the first time, through the miracle of communication. This was the first time our little family was focused on what SHE wanted to do.

 We came home and I learned that our new Irish nurse had been telling Sara tales about her trip to the beach at Atlantic City where she’d heard some dolphins talking to each other off the peer. I guess that is what had caught her fancy. We’d never really been sure what it was she was understanding of our speech or the world around her before. After the trip, she drew a beautiful dolphin picture carefully including the fins. Then she drew a picture for her teacher telling her about her trip by spelling and drawing BOAT and DOLPHINS without any prompting for her. The teacher said she’d never seen a first grader be able to spell “dolphin” or “ocean” on their own before. Sara had just remembered it from seeing it on the computer screen during her lessons over the summer.

 Helpful Tech Stuff

The tech lady from the New Jersey Commission for the Blind also came this week and hooked up the squeeze stick to the computer but Sara was starting to come down with a cold and didn’t feel like trying it out yet. She showed me a very complicated way to set up the stick with the alphabet. But I would like to try to contact the father of the CP boy who does the triothelon, the one who was on Oprah. It looks like he has a much more effective system for communicating. I really think Sara could be writing to us all her thoughts all the time if we could get her hooked up to the right system.

There’s more….ART!!!

Sara Ann went to an art show opening for A Square Deal last weekend at Espressit Coffee House. The 8″ by 8″ original works by artists from all over the world will sell from $50 to $400.The website for A Square Deal is They are ,giving her 15% of the proceeds towards her medical expenses. We took some of Sra’s artwork to share with the curater of the show. Stacey Douglas, the owner of the coffee shop and Beth Medoway, the owner of the show, were so impressed with Sara Ann’s art that they’ve offered to give her, her own little art show in conjunction with A Square Deal’s show. Beth even suggested that she would put one of Sara Ann’s pictures into their larger show to travel with it for a year.  

 So you are invited to the:

 Opening for Sara Ann’s Art Show inconjunction with A Square Deal

Sunday, September 26, 2010 2:00 to 4:00 pm

Espressit Coffee House

18 Haddon Avenue (just past corner of Cuthbert and Haddon Ave.)

Westmont, NJ 08108

Her work of eight prints of her drawings, is being hung in conjunction with a larger wonderful show called A Square Deal, which is up on the walls now. Sara’s work is being formatted to fit the 8 by 8 inch masonite boards that all of A Square Deal’s pictures are displayed on. Sara Ann’s pictures are titled; Flowers in the Park, The Monkey, The Sailboat with Whale, Self Portrait, Crazy Cat, Dinosaur, Slide and Swing, Sara’s House, and Clifford the Big Dog. These drawings are done hand over hand. Sara is not able to hold a marker in her hand by herself without it falling out. However, we let her make all the movements herself. Moving her hand causes her head to go far to the side, so all of her drawings are partially done by feel, like a conture drawing. She seems to have an excellent memory for detail. I’m hoping to also include 8 more prints of the drawings I described above which documented the first words and pictures she communicated on her own.   

 Sara Ann’s prints for sell will be available for those who might be interested. Also prints and books from Mamoo House books for Kids will be available. It looks like Sara inherited her Mamoo’s (her grandmother’s) artistic genes!!! Half the proceeds from the books will also help with Sara Ann’s treatments.

 More news: The old oak

We survived the cutting down of our 60 foot 90 year old oak tree in July. Mom and Sara had to head for a hotel for a week to avoid allergic reaction to sawdust.  Dad remained behind to deal with the crew and the gigantic mess. The tree was so big it broke the machinery, so a one day job turned into a week.  Dad kept the windows shut to avoid letting in the sawdust and also kept the air-conditioners off for the same reason. And yes it was the hottest week of the year. We really don’t know how he did it but it was a work of love. In the meantime, Sara Ann enjoyed a summer swim that she wouldn’t have had otherwise.

 New Post for Hugh

During August, our colleague conductor John Douglas sadly suddenly passed away. I attended his funeral and happened to see Dr. Anderson, head of the voice department. She asked me to send her Hugh’s resume. So now Hugh has been invited to teach at the opera department part time. He is so happy to be doing more music!

 Return to Swallowing School

The new effective seizure med is allowing Sara Ann to return to her “swallowing school”. We will be going to St. Joseph’s Feeding and Swallowing Clinic every other week in Patterson 2 hours north of us every other Wednesday. We begin next week…we hope. At the moment we’ve had to return to CHOP. Sara Ann came down with a bad cold night before last and had 2 seizures in a row. We spent the next 9 hours overnight in the  Lourdes ER trying to transfer to a bed at CHOP but CHOP was swamped and had no beds…a first for us. They finally took us at 7 am and put us in a closet that had been converted into a temporary room in the PICU. I wasn’t complaining. I’ve seen parents sleeping on the floor before so I was happy to have that foldout chair next to Sara’s bed. I actually slept 2 hours in the Er with my head propped on the rail Sara’s portable bed. I guess this shows we are veterans now. It’s Sara Ann’s 87th stay at a hospital. We are hoping she will be well for the art show opening. If she’s not, I will be there showing videos of her.

 Hope you can join us. We’d love to visit with you!

 Big hugs,

 Melissa, Hugh, and Sara Ann 

 PS: For those new to our story:

Sara Ann Kronrot was born Nov. 4 2003 with profound cerebral palsy. Doctors predicted she would be blind, deaf, and crippled with contractures. We, her parents proactively began alternative therapies at the age of 2 1/2 months old and a year later she had recovered her sight and hearing. After 300 hyperbaric oxygen treatments she recovered full range of motion in her limbs. All of the funds to pay for these treatments were raised from generous gifts from the community.

 Her ability to draw and write is really an added miracle. Sara Ann still has trouble holding up her head or torso and she cannot yet sit up or walk. She also has difficulty swallowing and must have 24/7 nursing care. Many medical treatments are still needed and her medical expenses are astronomical.

 Gifts may be sent to Friends of Sara, P.O. Box 172, Collingswood, NJ 08108, or donations via Paypal on Sara’s website,

 Sara Ann’s website is and her Facebook page!/Betterina?ref=ts. My blog about our journey with her is

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