Tuesday, November 17, 2009

Fight for Preemies

November 17th is prematurity awareness day. For the month of November we have been blogging our journey with prematurity and blogging for awareness. The theme of the March of Dimes this year is one that I can't help but be passionate about. This year they are using the phrase "Fight, because Babies shouldn't have to!"

I fight because Tyler and millions of other babies shouldn't have to.

Prematurity is the leading cause of Death of American newborns. Those who do survive often have life long challenges.

They fight everyday.

Tyler was born at 25 weeks and 3 days into my pregnancy.

94 days before he was suppose to. That means he fought for 94 days to live so that we could take him home. But the fighting hasn't stopped since.

He fought through a Patent Ductus Arteriosis, Grade 3 and 4 brain bleeds, Chronic lung disease, Retinopathy of prematurity, PVL, Cerebral palsy, hydrocephalus and craniosynostosis. He has been shunted, endured countless hours of therapy, bracing, brain surgeries, heart surgery, Skull reconstructions and low vision. All because he has had to fight. All because he came 94 days before he was suppose to.

I fight because every day we struggle with food, sensory processing, cerebral palsy, high muscle tone, no words. Every day I fight to help him lead a life that is less challenging. Everyday I try to do one thing that would make his world easier.

Everyday I try to tell our story so that ONE mom never has to feel the guilt I feel for not making it those 94 MORE days.

I fight so no mother has to wonder what she did to hurt her baby.

I fight so no mother has to question whether support should be withheld.
I fight to get accommodations made so that Tyler can be a participant in EVERY activity!

I fight because Tyler can't.

He has his own battle to fight. He is a hero. He is fighting every day. He attends those therapies that we take him to, he listens day in and day out at the boring letters and words he hears trying to get him to speak. He fights everyday to put one foot in front of the other with out falling, all because those 94 days he came to early left him with Cerebral Palsy. Everyday he fights.

I fight to help others understand that we need accommodations made so he can enjoy life to the fullest. I fight to find ways to help his processing disorder be a happy place instead of a lonely one.

I fight because of EVERY MEDICAL ADVANCE and ever MODERN DAY MIRACLES we can't figure out a way to keep a women pregnant LONG enough to save these babies from disability and death.

We have put a man on the moon for Pete' sake. We have found water on the moon. We are transplanting organs into children and adults, yet we STILL can't find a way for a woman to give her child a FULL 40 weeks of pregnancy to SAVE HER CHILD from a life of disability.

I fight because I love a preemie.

I fight because he is mine. And he deserved nine months. And I keep fighting because he deserves the best.

I fight because I want my next child to have NINE MONTHS

I fight because I am raising a miracle.

I fight, so he doesn't have to!

We fight so THEY don't have to.

Please, support us in your blogging and face book status and twitter messages. Fight4preemie so they don't have to! We would especially like to see our family out there showing their support for the Miracle that happened in their life on Sept.21st and who every single day shows courage to be the best Tyler he can be!

FIGHT....... Because they can't

* this was a repost from my blog, I haven't been around much but have read. We have a few things coming up that I can't wait to share and hope to get some input from the lovely ladies we have on here! Thanks for reading, sorry if the photos are to big!*

Monday, November 16, 2009


My life this year has been in a constant state of chaos in stasis and right now, I see no end to it.

I just met with my school's SLP, whom I practically had to beg to evaluate my little girl. Finally, a full 45+ days after the fact, today I was informed that her performance is at the 1st percentile.

At my IEP ammendment meeting, my 2nd grade teacher was in attendance as was the assistant principal; both were present at the initial IEP meeting back in September. You would not believe how quickly one's hackles can be raised upon hearing the insensitive words of an uninformed AP.

For instance, during our conversation, these school professionals said things like "oh well sounds like our school is not a good match for your child"... and "maybe we should write a safety goal.. in case you change schools or something".. and at the beginning of the school year, my school virtually told me that a 1:1 aide was not an option for my child. And yet today, the AP told me that without medical documentation or IQ testing-- or the fact that I have chosen not to share this information with them- that they cannot provide additional services. I responded saying that I would gladly share my recent psychological testing if they would provide an aide, but that I had already submitted copies of testing that documented a need for an aide. I also bluntly told them that I saw no reason they needed to have access to IQ tests if they weren't even going to try to meet the needs of my child.

You would not believe how irritated I was to watch an SLP, AP, and regular teacher talk themselves in circles. Interestingly and totally off topic, my SLP informed me that she always wanted to work in the NICU. And yet when we started talking about my daughter and her syndrome, her words were "yeah and she has Velo- car... whatever its called syndrome." I was a bit put off by her insensitivity.

But. No matter. I guess I will start making plans to change schools. Whats a littlemor chaos?

Tuesday, November 10, 2009


It has been recomended that J starts wearing a helmet! I am such a mess about it. He needs it in hopes to prevent all the bruising that is occuring due to his head banging. Does anyone know where I could find one that would fit a baby. He has such a small head a normal toddler helmet is just too big...let me know what you know. Thanks Ladies..