Movie This Weekend

On Sunday night at 9:00, ABC is airing a movie called, "A Smile as Big as the Moon".  It's a true story about a special education teacher who dreams of taking his students to space camp.  I'll be watching (and crying I'm sure - since I'm super sappy) and hope you do to.  Here is an article from JDNews.com about two of their local special needs children who received rolls in the movie.

Special needs students land part in movie

January 18, 2012 5:34 AM


ANIESA HOLMES - DAILY NEWS STAFF


Two local special needs students are making their acting debuts in a television movie that will air this month.

Jacksonville residents Jessica Martinez, 25, and Kristofer Imhoff, 22, will be featured in “A Smile as Big as the Moon,” a Hallmark Hall of Fame Productions movie that will air on Jan. 29 at 8 p.m. on ABC.

"A Smile as Big as the Moon" is based on a book written by former high school football coach and special education teacher Mike Kersjes, who teams up with teacher Robynn McKinney to bring a group of special needs students to Space Camp in 1988.

“I never acted in anything before but I was happy,” Jessica said.

Jessica’s mother Jeanette Martinez said the opportunity came by complete chance several months ago after a friend informed her of an upcoming casting call for the film.

“They were looking for young adults to play as special needs (characters),” Jeanette said. “I sent them a picture of Jessica and said that she doesn’t have to act it because she lives it every day.”

They received a phone call from a casting director and headed to Wilmington for auditions.


“When we were there the director (James Sadwith) enjoyed meeting us so much he decided to go a different route and use actual special needs kids instead of just people who act special needs,” Jeanette said. “He asked if we knew any other kids who could be a part of it.”


Jessica, who has Down syndrome, and Kristofer, who is autistic, are both students at the Adult Day Activity program for special needs students at IQuOLIOC Inc. in Jacksonville. Jeanette asked IQuOLIOC owner and director Tammy Cleveland to assist with getting more students involved. Students Norma Petrackis, Eric Shepard, Raymond Hamrick and Brandon Rhodes were selected as day extras for the movie.


“Kris and Jessica were what they called featured extras,” Jeanette said. “They filmed the entire time and were just like the regular cast, and some of our other kids were day extras.”


Cleveland accompanied the students for filming in Wilmington and at The U.S. Space and Rocket Center in Huntsville, Ala., from Sept. 28 until Oct. 29, where they had the opportunity to experience space flight simulators and even got their very own space suits to take home. They also had the chance to meet and work alongside actors John Corbett and Jessica Schram, who play Kersjes and McKinney, respectively. Cleveland said she was impressed that her students never complained and enjoyed the demanding experience.
“They had very long days; they would start between five and seven in the morning and we didn’t leave until five in the evening,” Cleveland said.


Not only were the students excited about being featured in a movie, but they also took advantage of having their own trailers on set and other additional perks of being an actor.


“I was excited about being at our hotel and going to the pool and all of the food,” Kristofer said.


Jeanette and Cleveland plan to invite family and friends for a private red carpet movie premiere on Jan. 29 at the Jacksonville Country Club to congratulate the actors on a great performance. Jeanette said that she hopes the experience will encourage Jessica, Kristofer and others who have special needs to pursue their dreams.


“It was the experience of a lifetime, and when Jessica came back she said ‘I want to do this again,’” Jeanette said. “That tells you how wonderful everyone was. Working with kids in general can be hard and special needs kids can be really difficult, but love and compassion was shown to all of them.”

Until Next Time!

Lots of Love,

Oy Vey!

Okay.  So remember yesterday when I said there wasn't anything terribly exciting happening around our house?  Well, I think I jinxed us.  About 4 1/2 hours after I posted on the blog yesterday, we had an emergency.

Isabella asked me if she could have a mini powdered doughnut.  I told her that was fine and when she went to the counter to get one.  On the counter, right next to the box of doughnuts was a knife.  A large knife.  I was downstairs switching over the laundry when she asked and forgot the knife was sitting there.  The next thing I heard was a horrible, loud scream.  I ran upstairs and saw her leg was bleeding.  She had bumped the knife and as it fell off the counter it hit her leg.

So to make a very long story short, she is okay.  She didn't get stitches because she was border-line hysterical.  The doctor decided to try and use medical glue.  Her leg is wrapped and we have to make sure it doesn't open.  If it does open over the weekend, then we will have to go back and she will need stitches.  The cut itself isn't terribly big but it is deep.  Just thinking about what could have happened gives me chills.  Thank God it wasn't worse.

This is the knife...  

 (I put a butter knife next to it so you could see the size of the blade - yikes!)

My brave girl!!!

Until Next Time!

Lots of Love,

Some Pictures

There hasn't been anything terribly exciting happening around here.  Just the normal everyday stuff.  So here are a few pictures.

I love these polka-dots!

My little lumberjack : )

(We have been having A LOT of trouble with Raymond hitting his head so we've had to pull out his helmet.)

Until Next Time!

Lots of Love,

Brick Walls

I found out about this story back on January 15 and it has taken me this long to share it with you.  I think part of me was waiting to find out it wasn't true.  That there was some type of misunderstanding.  Unfortunately, it is true...and it is heart breaking.  I'm going to warn you, this WILL be hard to read.

I'm going to introduce you to the Rivera Family.

They are a local hard-working family.  They are blessed with two sons, and a daughter, Amelia.  Amelia was born with Wolf-Hirschhorn Syndrome. 

Definition:

Wolf-Hirschhorn syndrome (WHS) refers to a condition that is caused by a missing part (deletion) of the short arm of chromosome 4. This missing genetic material results in severe developmental delays, a characteristic facial appearance, and may include a variety of other birth defects.

To learn more, click here.

Amelia, sadly is in need of a kidney transplant.  She sees the doctor's in the nephrology department at CHOP.  This is the story Amelia's mother and I both want you to hear.  The following was written by Chrissy Rivera and posted on the Wolf-Hirschhorn Syndrome parent support website.

I am going to try and tell you what happened to us on January 10, 2012, in the conference room in the Nephrology department at Children’s Hospital of Philadelphia.

We arrived for our regular Nephrology visit with Amelia’s doctor who has seen her for the last three years. She examines Amelia and sends us for labs. I ask about the transplant and she says we have about six months to a year until she needs one. She tells us she reserved the conference room and when we get back from labs, we can meet with the transplant team and he can tell us about the transplant process.

After the labs, Amelia falls asleep in her stroller and we are called back to a large room with a screen and about sixteen chairs. Joe and I get comfortable and leave a space between us to fit the stroller. After about five minutes, a doctor and a social worker enter the room. They sit across from us but also leave a space between the two of them.

The doctor begins to talk and I listen intently on what he is saying. He has a Peruvian accent and is small, with brown hair, a mustache and is about sixty five years old. He gets about four sentences out ( I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV. I remind myself to focus and look back at the doctor. I am still smiling.

He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.

I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”

The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.

I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”

“Yes.”

I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.

A bit of hope. I sit up and get excited.

“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.

“STOP IT NOW!” The anger is taking over. Thank God. Why did it take so long to get here?

The social worker is writing some things down. Not sure what. She casually gets up to take a call. My eyes follow her to the phone and I see Joe’s face. His mouth is open, his face is pale and he is staring straight ahead of him at the white board.

Rage fills the room. I point in his little, brown pudgy face. “Do not talk about her quality of life. You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next because SHE WILL HAVE IT DONE AND IT WILL BE AT CHOP.”

I see the social worker quickly writing down what I just said. Joe hasn’t moved. Amelia is still asleep.

The social worker decides to join the conversation. “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”

I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”

She smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”

In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”

The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”

“DO OTHER CHILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”

“Yes, but it is different for her. She is already brain damaged and mentally retarded.”

He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your family are with Amelia.”

The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”

I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”

“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”

“And then who do I see?”

“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”

They both get up and leave the room.

I look at Joe who is sobbing trying to get the stroller and Amelia’s backpack. I break down with him before we head to the parking garage.

I hope you are disturbed, troubled, distressed, and pissed off when you read this. I hope you share it with many, many people. Although I did not know this yesterday, this is very common and happens across the map. I have researched and researched and researched transplants and the MR, as they are called in the medical journals, and it is appalling. We are in the year 2012 and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed.

I CAN'T EVEN IMAGINE!

This is Amelia. 

I am heart broken for her & her family.

Until Next Time.

Lots of Love,

Feeding Clinic

Last Tuesday we took Raymond to see Dr. Williams at the Feeding Clinic in Hershey.  Raymond's pulmonologist has given us the green light on trying to feed Raymond by mouth again!  Chris took the day off of work to go along.  We haven't been to the clinic in over a year so we were both agree to see what Dr. Williams would say.  We are starting by using a nuk brush and dipping it into a small amount of pureed baby food.  We are then inserting it into Raymond's mouth and helping him push his tongue down.  This is to be done 5 times a day for 5 minutes at a time.  It's not about the amount of food he is getting - that's not what we're after - but him building tolerance for things in his mouth.  So far Raymond is doing great.  Once there is food in his mouth he likes to take his hand and smear the food around in his mouth and on his face.  Raymond doesn't really know how to swallow so this exercise should help that also.  We go back to the feeding clinic on Feb. 20.  At that time, the doctor's will schedule a swallow study for Raymond to make sure that he hasn't aspirated any of the small amounts of food he's getting.  If he hasn't, then Raymond will start an intensive in-patient 6 week program (give or take) to really get him on track.  I will live at the Ronald McDonald House with the kids during that time.  We are excited for this chapter and know it will help Raymond tremendously!  Dr. Williams told us that according the the Down Syndrome growth chart for a boy Raymond's age, he is in the 50th percentile for weight and the 95th percentile for height.  So according to those statistics, Raymond isn't as small as we thought.  Now if that was a chart for a "normal" boy Raymond's age, it would show him as under weight and a little short.  Just for your comparison.   

HE LOOKS LIKE DADDY!!!

Silly Lily!

Everyone wanted me to take their picture...they kept trying to stand in front of the other.

Until Next Time!

Lots of Love,

Raymond hugged Lily 49 times today. At least that's how many times I saw him do it. They sure do love each other!  That makes this mama smile : )

The PA Farm Show

Last Tuesday (1/3) we headed back to the museum with Raymond and two of his therapists. We are trying to find out what works and what doesn't work for Raymond when trying to help prompt him in public. This trip we mostly discovered what doesn't work : )

We are going back to square one and chipping away at different idea's that might be more effective. It's all about trial and error. We'll eventually figure out something that works for Raymond. I'm willing to keep trying as long as it takes! When we go on these outings, I have no expectations. Just an open mind. He's my buddy and I want him to be able to walk when we are out instead of being cooped up in his stroller.

Raymond liked playing with the ribbon weaving activity with Lisa and Stacey.

On Friday, Chris, Lily and I took Raymond to Hershey for his dental procedure. Isabella stayed home with Grammy. It went extremely well. Dr. Ross wasn't able to do all he intended but what he was able to finish looks great. Raymond's two front teeth on the bottom were a big concern. Those two teeth were so sharp that Raymond's doctor's were afraid he might bite his tongue during a seizure and sever a major artery. Dr. Ross smoothed the teeth out and capped them. Raymond has two little chicklets in the front now. His other teeth on the bottom are still sharp because Dr. Ross was afraid that smoothing them down would cause sensitivity issues.

While we waited for Raymond's procedure to end, Lily got a banana in the cafeteria.

That made her very happy!

Since Raymond's procedure went much better then everyone expected, we decided to take the kids to the farm show on Monday since Chris had off. This was Lily's first time there.
Love this painted rain barrel!Raymond kept saying, "Coooowwww!" and "Moooo!"

I tried taking pictures of the cows for him but a lot of them were being washed and there was so much dust and moisture in the air. My camera picked all of it up in the shot and the pictures were terrible.

I had more success with the roosters and chickens. I love this section of the farm show.

Isabella thought the newly hatched chicks were so cute.

We watched this little guy break out of his shell. Then the poor thing tried to walk and exhausted himself.

Isabella and I went into the butterfly tent. I don't remember it at the farm show last year. We each got a q-tip with Gatorade on it to feed the butterflies. It was fun.

The butterflies kept landing all over me. I think at one point I had 8 on my shirt. I asked Isabella to take a picture with me and right as I snapped it she stepped away to "catch" a butterfly. Oh well, at least you can see the butterfly on my shirt.

We had lots of fun at the farm show!

Raymond has several important appointments coming up. I'll let you know more about those after they happen. Hopefully good things are on the horizon for our little man. That's all I have to report for now. Well, actually there's one more thing...

Sadie got a new coat. Doesn't she look pretty?!? Lily likes it.

Until Next Time!

Lots of Love,