Nothing!

I am loving that word tonight becasue it is more than a word...

It is a state of being!

We had absolutely, positively nothing planned tonight....

and I could not have been any happier.

The kids are asleep after a night of fun at home and our home is blissfully still.

I am going to go chill with Marc, who just got home from a gig and take full advantage!

Nighty night!

Sister Love!

My sister gifted me with something that I have been desiring for a couple of years.  She totally shocked me and sent me her first Ipad!  I am one happy chick, as you can see on this snapshot that Marc took just after I opened that bad boy!

I am such a technophile...it is ridiculous.  The way to my heart is gauged through gigs and the www.

Thank you missy lil' sissy.  You are an awesome sister; not because you gave me an Ipad but because you want what makes me happy just as I want the same for you.

Sisterhood is a gift beyond measure!

Soccer Season

We signed up the DD for Soccer and the practices have begun!  Sounds benign enough....right?  Not so much!

Being virtual twins makes this a bit tricky!  One boy and one girl, the same age, makes for an quite interesting schedule to say the least.  For the next 3 months we will be running to two separate practices, three times a week and then we will have a few games on the schedule that will conflict on days that Marc will be working.

Yup....interesting to say the least....stay tuned!

The Katie Starr Team

Katie's first grade teacher and the Dynamic Duo.  She is the best!!!

What a great event.  We are so proud of what we were able to accomplish with the help of the best family and friends in the world!  The Katie Starr Team will top $10,000.00 when the tally is done.  I just sent the Foundation Fighting Blindness a new batch of checks that were given to me.  We have until June to finalize this fiscal year so we will continue to add to our total so that the research for the treatments and a possible cure for Hereditary Retinal Blindness can go on!  We will not stop until that happens!

Update

I am really tired tonight...really too tired to post much but since I have made a commitment...well, here I go!

Ethan came through his dental procedure with flying colors.  Of course her did...that is just the way our precious boy rolls.  It did not even matter that the procedure ended with an unexpected root canal and crown.  He took it like a champ and not even one complaint.

Like I posted about yesterday, food was on his mind from the moment that he woke up.

Marc took care of that with a big thick chocolate shake.

That made our patient one very content patient.

He was even more content when his sister came home from school and he could tell her all of the stories of the past few days.  I so love the Dynamic Duo.

Goodnight all!

The hurt runs deep

Ethan has a persistent obsession with food.  He thinks about it, plans what he wants to eat; sometimes several meals ahead and basically wants to discuss it....a lot!  This is his thing and some days are better than others.  We understand that it is very much based in the reality of his horrific beginnings.  When you adopt a child who is 2.4 years old and he is completely malnourished, weighing in at a whopping 17 lbs., well, you can just guess that there was and probably always will be...a significant issue.  Ethan never had any real food, other than formula until we adopted him and because of that fact, he was orally defensive and suffered from oral aversion.  There was lots of therapy to get him over that hump.

Four years later, he still has food weirdness so we let him do what he needs to do, to assure himself that food is always available.  When he is really in an overly fixated state, we verbally reassure him of that fact.

He has seemed to ease up a bit about the food lately, not a huge amount but in baby steps.

Today, I saw just how far there still is to go...

Ethan has to go to the dentist tomorrow to have another round of dental surgery.  All that bottle drinking and poor care has done a real number on his teeth and so we are in round two of several procedures.  We were discussing it with him tonight over dinner.  I was explaining what would happen and then I told him that he would not be able to eat or drink in the morning before he went to the dentist.

As soon as I said it, I wished that I had not!

I saw the first sign of primal fear in his eyes and I knew what was coming.  So, I did what any mother who does not want to see their child hurting would do - I began qualifying my previous statement and tried to drive the point home that he would just have a DELAYED breakfast.  He was not missing anything and that he could have anything he wanted when he woke up....I even threw in the option that he could have his fav...chocolate ice cream.

But it was too late....the big sad flood gates opened.  Not a spoiled, whiny, "I want to get my way" kind of crying...but deep, sad, "I am terrified when food is withheld from me" tears coming from his huge round eyes and down his cheeks kind of crying.

I felt devastated and so did Marc.  We calmly assured him that he NEVER has to worry and that he could eat as much as he wanted as soon as he felt up to it.  Katie also jumped in and reassured him...she was so sad for him.  He asked a few more feeble questions about the whens, wheres and whys and finally he seemed to calm down after what seemed like an eternity.

I am quite sure that when we left him to go to sleep tonight, he was still thinking about missing that meal....no fear surrounding the pain of a dental procedure....just fear about missing a meal.

and I am left once again feeling helpless and sickened at the thought of that.

What a beautiful day!

Today was the day that we had been anticipating for quite some time.  I fund raise for the Foundation Fighting Blindness all year round but the Vision Walk is a marker from year to year of how far we have to go.


We awoke to a truly brilliant day.  The weather was sunny and the temperature was a bit chilly when we woke up but warmed up in no time and made it just about perfect.  We quickly prepared the children and gathered our supplies, made a food run and high tailed it to the park.  Once there, Marc set up a table with all of the T-Shirts for The Katie Starr Team and we began to greet our team members.  Family and friends started drifting in and before we knew it we were overwhelmed once again by the number of people who came to support our mission.  We gave out 85 T-Shirts to our team members!!


It was then time to get up on stage and thank everyone for coming as well as all of the sponsors.  I spoke a little about why I have thrown my support behind the FFB and then we had a pep rally of sorts.  We ended the formalities and quickly took pictures.  My dear friend Grace was the official Vision Walk Photographer and she was just amazing.  I cannot wait to see all of the wonderful shots that she took!!


The corporate people took me up to the front so that our family could cut the ribbon and begin the walk....and then we were off!!


Katie Starr, Ethan and their friends took the lead on their razor scooters and the rest of us happily took up the rear by foot.   As I walked, I jockeyed between several groups of people.  It was so nice to be able to talk to so many who came out as we followed the path.  I was so touched by the people who happily walked to help the cause and our precious girl.  I even got some fun walk time in with my big guy Justin and my daughter in law Judy.  It was wonderful!


Once we were done and our thank you's were spoken, several of us stayed around and picnicked in the park.


There were other happy surprises as well today.  Marc's cousins from New Jersey were in town and they came with a dear mutual friend and walked with us; which was totally unexpected.  Also, our dear friends, Ken and JoAnn from Chicago were also in town and totally shocked us by coming and walking with us.


Of course, the real reason that we do this is to raise awareness and money.  The Katie Starr Team was the #1 Team in South Florida and when the final count is done next week we should top $10,000.00!!  I am so thankful for all that came out in support of us again this year.  We were missing some friends from last year as this seemed to be a busy weekend for many but we know that many of those friends will be out again, walking by our side, if they are able to next year.


Raising funds for research is a year round business and although this one day has passed, our mission has not.  The fiscal year does not end until June of 2012 for this walk season, so my work is not complete.


The link is available and I will post it from time to time.


There is no way I will rest until they can find the answers and develop treatments or even a cure for hereditary blindness.  Our daughter's sight and ten million other's depend on that!

www.fightblindness.org/goto/katie.starr

P.S.  I hope to have some pictures posted very soon!

Alone we can do so little;

together we can do so much. 

 ~ Helen Keller

Tomorrow is the day!

Last minute info about the walk

Just a last minute reminder that we are just two days away from the 2011 South Florida Vision Walk.  I thank all of you in advance for any and all participation that you are offering to The Katie Starr Team.  You assistance in this will be funding the research that will one day end hereditary retinal blinding disorders and allow people to live a life with their vision intact.  Our 6 year old daughter, Katie Starr, suffers from a disorder called Cone-Rod Dystrophy and faces a life in the dark unless a cure is found.

Just some last minute items to remember.  The park we are walking in is at Sunrise Boulevard and the Intracoastal.  It is a State Park and they are not waiving their entrance fee this year which thankfully is only $1.00.

There will be breakfast items such as bagels, breakfast bars and fruit.  Coffee and Hot Chocolate will also be available.  For lunch after the walk there will be pizza available.  Feel free to bring your own lunch if Pizza isn’t your bag as well as a chair or blanket to picnic on.  The day is shaping up to be a nice one and many of us will be picnicking after the walk. 

The walk is mostly symbolic.  You can walk all, part or none at all.  The idea is to come out, raise awareness and raise the money for research.  Please secure any and all donations that you can and bring them to registration.  Please ask friends and family if they help with just a few dollars.  It all makes a difference!  Please make sure that you are registered under “The Katie Starr Team.”  We are the number one team in South Florida and we are going to fully represent the day of the walk!  I have Team T-Shirts for the first 100 adults and 25 children that come out that day.  You can also pick up a Foundation T-Shirt at the walk for your collection! ;-)

There will be a bounce house and inflatable slide for the kids as well as cotton candy, snow cones, and a face painter.  It will be a fun and rewarding day for all!

Here is the info:  Please come and walk but even if you can't please help us with a donation by Clicking on
www.fightblindness.org/goto/katie.starr and by spreading the word.  Thank you so much!

Date: Saturday, November 12, 2011        
Location: Hugh Taylor Birch State Park
3109 East Sunrise Boulevard
Fort Lauderdale, FL  33304
Registration:  9:00 am
Walk Start: 10:00 a.m.
Walk Chairs: Lori and Marc Weinstock
Support our team and help bring us closer to a cure because a Cure is in Sight!

Why should I get involved?

I am sure that the title of this post is the question that many people ask themselves when I post about the Foundation Fighting Blindness and their quest to fund preventions, treatments or even a cure for devastating hereditary blinding diseases.  Heck, before this happened to our family, I would have asked the same question.  Now it is all very clear to me.

Let me clarify a few things by sharing a few facts with you: 

The urgent mission of The Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher Syndrome, and the entire spectrum of retinal degenerative diseases.
 

• More than 10 million Americans of every age and race suffer vision loss from these blinding diseases.
 

• The Foundation has funded thousands of research studies at hundreds of prominent institutions worldwide. Currently, the Foundation funds 138 grants at 76 institutions.
 

• The Foundation funds leading-edge research in promising areas such as genetics, gene therapy, retinal cell transplantation, and pharmaceutical and nutritional therapies.
 

• Since its inception in 1971, the Foundation has raised more than $425 million.
 

• RP and Usher syndrome are inherited diseases commonly diagnosed during childhood or young adulthood. RP causes severe vision loss leading to legal and/or complete blindness. Children with Usher syndrome are born with varying degrees of deafness and later develop RP.

• Leading retinal research scientists praise the advances enabled by The Foundation.

• Age-related macular degeneration has inherited risks and is characterized by a progressive loss of central vision. AMD is the leading cause of blindness in adults over age 55 in the U.S. and other developed countries.

That last one is the real kicker.  Macular Degeneration is a blinding eye disease that will show up in many of your families as they age.  No family is exempt from these horrible diseases.  It just so happens that it has touched our young daughter now and yes, while that is tragic - it is also tragic to lose sight at any age.  We are truly all fighting the same battle.

Please think about the many people that will be effected by these diseases if nothing is done to change the future.

“I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.” ~Helen Keller

www.fightblindness.org/goto/katie.starr

Another Installment of: Out of the Mouths of Babes!

Last evening Katie was walking past the TV and saw a report on the news about gay marriage.  She blurted out,  "Hey, that's crazy...that one dude is marrying that other dude!'  "How are they going to have babies?"

Beyond the huge issues at hand with these statements, all we could do was to try our best to stifle our laughter, since what hit our funny bone was the use of the word "Dude!"  I did not even know she had ever heard that retro word! 

Once I collected myself from the hilarity of it all, I responded by telling her that the purpose of marriage was not necessarily to make babies.  Since her knowledge on this subject is sketchy at best, I went right on to the second item on the agenda, which was gay love and marriage.  I explained that most of the time women and men fall in love and that sometimes, men fall in love with men and that women fall in love with women.  I said that love is love and that all love is OK.

I did not get into it any deeper than that... she is 6 and that was quite enough!  I wasn't even going near adoption and gay marriage.  That is for another day and time in the future!  

All I gotta say is Wow dude...that Katie Starr is too much!

Oh and one more thing..now I can't stop calling everyone in the house...Dude!

I am shameless when it comes to something this important!

Whenever I post about the Vision Walk on my blog, it gets so quiet that I can practically here the birds chirping!  If you think that I go on too much here then you should see my on Facebook.  I am relentless!

The bottom line is that it is my mission in life to raise awareness and money for the Foundation Fighting Blindness so that there will be advances in the science that will save my daughter's vision.  I am one minded towards this end...I am forward...I am brazen...and yes, I am shameless!  You would be too, if your child had such a diagnosis.

I do not want my daughter to have to face a life of navigating in the dark.  I don't want her to have it that much tougher than everyone else.  If I can do anything to stop it from happening then I will.

Please help me with this.  If you have been a long time reader of my blog or are someone new, I ask that you donate any little bit that you can on behalf of the this precious little girl and the over 10 million people who are also in the same boat! $1, $5, $10 or anything at all will help our cause.  Even the change in your pocket will make a difference.

"Alone we can do so little; together we can do so much." 

~ Helen Keller

Once again, to learn more about our Vision Walk and our goal please link to:

www.fightblindness.org/goto/katie.starr

Still Waters Run Deep

While cleaning Katie's desk of her hundreds of masterpieces, in order to make way for all of the masterpieces to come, this is one of the more interesting pieces that I found.


I did not know whether to laugh or cry.  My little girl seems to be a bit fascinated with the Bieber!  I am still digesting this newest find and contemplating the future.  Can't we just freeze time and keep my baby innocent forever?  I already know the answer to that but I still hear that refrain in my head over and over when stuff like this pops up.  The crazy thing is that I really shelter the kids quite a bit to preserve their innocence and they have no older siblings in the home to influence them.  I cannot even imagine what would be if I wasn't the way that I am....perish the thought!


P.S.  Katie just walked in on me and saw this post with the pic and could not figure out why it was on the computer screen.  She looked at me and through her laughter said..."and how did you get that on there you sneaky mommy!?!"  


Oh man, this girl is gonna give us a run for our money!

To Do List

Making a list may help to keep me on track so here is my top ten list of things to get accomplished in November besides all of the usual stuff:

1) Complete my blog a day project for the Month of November...even if it kills me!
 

2) Organize my desk at home, which has reached epic status...and not in a good way!  My closet as well!
 

3) Begin holiday shopping.  That takes money so it may not happen until December.
 

4) Get back to my photography, which has taken a back seat to my other obligations.
 

5) Plan some time away with Marc for early next year.  We desperately need it.
 

6) Prepare for our annual garage sale in December. (Our trash is your treasure ;-)
 

7) Buy some new shoes...mama really needs a new pair!  This also reminds me that the kids need cleats for soccer.  **Mama may not get her new shoes.
 

8) Go through the kids stuff before the holidays and pare it all down to what is actually still being worn and used (see #6)
 

9) Work my ass off to get my final tally up for the Vision Walk on November 12th!
 

10) Find some "me" time!  (This one hardly seems possible)

What's on your to do list this month?

I always say that raising children is not for the faint of heart

....and it is not!

Tonight was one of the most terrifying nights of my life.  Katie and her team were in the Cheer-Off and tonight was their finale performance; one that they had prepared for for several weeks.  While the girls were waiting to go on for their performance, they were all doing cartwheels and handstands. Katie did a handstand that had too much force and she went over and hit her head and back hard on the ground and at the same time! She knocked the wind out of herself and she was also knocked unconscious for a few moments. I ran around the fence to get to her and the wonderful dad's on our team sprang into action over the fence to also get to her. By mere happenstance they both have paramedic training.  They also thought she may have had a seizure so 911 was immediately called and the paramedics came.  She was ultimately cleared and my brave girl chose to cheer in her final competition!  They ended up with the trophy for the best performance and I ended up with another 100 gray hairs!  Marc was working so he missed the whole horrible ordeal....UGH!!!

Poor Ethan was devastated as he watched all of this go down.  When we got back from the ambulance he was sobbing.  He and his sister are so devoted to each other.  He was besides himself.  After I calmed him down and both children were not looking I just sobbed in my parents arms. 

I am so grateful that they were there for me as well as all of the families of the girls that Katie cheers with.  They are so wonderful and they sprang into action for Katie like she was one of their children.  They were amazing!

So today, on this 4th day of Thanksgiving I am thankful that Katie is OK after such an awful accident!

The girls did just great.  Here is a video of their performance.  I was kneeling in a very awkward location, just trying to squeeze in to get my video.  It is a bit shaky and then I went pretty far to the right at the end, but this film will still give you a taste of their performance!

Thank G-d things worked out OK.  Hug your children a little closer tonight.  Life can change in the blink of an eye!

Note:  Katie is the second little girl from the right.

Trying to Pull Rank

This conversation took place two days ago over breakfast......

Katie:  "Mommy, am I in charge of Ethan when you and daddy are not home?" 

Me: "We are pretty much always here and if by chance we are not then we have someone taking care of you....and why should you be in charge anyway since you are the same age as  Ethan?"

Katie:  "Because I am over 2 months older and taller than Ethan!"

Me:  "That does not make you in charge!"

Ethan:  "See Katie....your not my boss!!" 

Katie:  Looking a little peeved and not convinced at all did not pursue the issue at hand....

Two days later.....

Katie:  Can you and Daddy go to the bathroom at the same time so that I can be in charge?!?

The laughter that was probably heard all over our neighborhood was probably a good indication to her as to the answer to that question.

A W E S O M E ! !

Approximately 2.5 months ago, six little girls (including Katie Starr) came together to form a cheerleading team.  They were shy, tentative and cheering was anything but natural for them.

In short order these same six little girls became a team...a loud, confident and energetic bunch who not only cheer as a cohesive group but are quite honestly.........
A W E S O M E!  

There have been loads of practices and games all leading up to the final Cheer-Off, which takes place this Friday night.  They have a routine that they have practiced to the point that every mom and dad in our group can do it as well...heck, Katie's loyal fan Ethan knows it as well as they do!

Tonight was our final practice and we wrapped it up with a pizza party.  It was a wonderful final get together before the grand finale.  It is not goodbye though...the girls and their families have formed a wonderful bond...one that will outlast the final cheer of the season!

Go Colts!!

It is National Blog Posting Month!

November is the month where many people try to post each and every day on their blog.  Once again, I am going to participate.  I loved the last go round which was back in 2009.  I have been quite erratic with my posting for about a year.  If I trace it back, it probably will lead me back to the month or so after we received Katie's diagnosis.  Life seemed to go into overdrive, even more than normal, and I did not have any desire to blog frequently.

A year later I have a much different focus.  My main focus is my family.  But the other important very important focus of my life is to raise awareness and money for the Foundation Fighting Blindness so that our daughter does not lose her sight.  I am also in the process of trying to find a lab who will test her DNA sample promptly so that we can begin the process of identifying the gene that has caused this disease that she inherited.

If you have been a regular reader for the past 6.5 years or are have found me more recently; please join me in raising awareness and money by clicking on my link below, reading the whole story and joining with me to fund a treatment or cure for this amazing little girl; our Katie Starr!  Oh and one more thing....I will see you each and every day of November so please check back in on me!

The Katie Starr Team