My little friend, Mikayla

For you that have not have significant medical bills for your child, consider yourself LUCKY!!

Many of us have NOT been so lucky.

My little friend, Mikayla and her parents Mike and Liz are among the few that have not been so lucky. Mikayla has craniosynostosis (the same as Carson, Cooper, and Keegan) and had surgery not so long ago. Mike and Liz are self employed and they are paying out the rear for their insurance in the first place. I do believe Liz mentioned that they pay $1200 a month for their insurance!! That is crazy HIGH, but it's what they need to do so that they have some coverage for their family.

Liz mentioned that Mikayla's surgery bills have started to pour in and it is not a pretty sight. As of a few days ago, the medical bill amount was up to 156,000 and THEIR insurance has only paid 66,000 of it. That means the rest is up to Liz and Mike.

Liz has started a pay pal account for donations. Please, if you can spare $5.00 (or more) I know this wonderful family would be so grateful!

"Thank you all for the bottom of our hearts! The Harbord Family"

Today, Liz and her family did something for us (joined in on a chiari walk) and would LOVE to do something for her!


So gald

Thank you everyone for your comments. I am glad to hear that FB is not stealing the show!


Keegan: His MRI has been moved from Oct 14Th to Sept 30Th due to some different symptoms that have been occurring. I am hoping that Dr.I and Dr. I will share the scan and a decision will be made quickly to decide what to do. I hate to say it, but before we know it, it will be December and we will all be busy with Christmas. EEK! I will update the results after next Wednesday.

Riley: She has been complaining of "spine" pain. I am not to sure what to think about it so I decided to let the experts take her on. I took her to the pediatrician twice and neither had anything to say other than you better take her to Dr. I. While we were waiting to see Dr. I, I decided to contact my chiropractor buddy and to have him take a peek. I took her in and had our MRI in tow. We looked over her scan together and noticed something funny. She had a pretty big c curve on her spine. He asked if it would be OK if he took some x rays of Riley to see if we could see that same c curve on x ray - we did, but it was not as bad. He did notice something else though. Riley has a 1 cm leg length difference. He put a lift in her shoe and sent us on our way. Hopefully this will help straighten out her spine and prevent any further curvature.
We had our appointment with Dr. I last Thursday and decided it was time to have a repeat MRI done. Not sure when that will be, but I will post as soon as I know. Hopefully we will have some answers to her pain after that.

Carson: Continues to recover from her chiari surgery. She is actually doing really well. Her 3 month post op MRI will be on Nov 19Th. She really looks fantastic.

Cooper: Coop is doing terrific! No medical updates for him! YEAH!!!

Thanks everyone for hanging in there with us. We appreciate all the support.


Darn Facebook!

Ever since I started my FB page I have slowly been loosing my comments on my posts!!

Please, if you are out there and still reading, let me know by posting a comment. If not, I may just have to shut down the blog and keep going with my FB page.

We wouldn't want that now would we???


JPF Gala video

You have got to see this FANTASTIC video! Makes my eyes water as I watch it. Watch for picture number 68 adn 70...you just might know them!

JORGE POSADA Foundation Gala NYC Sept 10, 2009 - Craniosynostosis

Today and my melt down

Carson and her hero! One of the greatest craniofacial surgeons out there!

Home from Carson's one year post op (and CT) second cranio surgery appointment. Riley is having "spine" pain and will go to Madison next week. Keegan is having terrible leg pain and will be having a spine MRI soon in Madison. It looks like he will have his chiari surgery before Christmas. The shit never stops. I am wearing thin. Cried at Carson's CT for no reason. Just need a day to myself.


The begining

A few of you asked where the begining of my blog is, well here it is - THE BEGINING. If you scroll all the way to the bottom you will find my very first blog entry. Just to warn you, I've been blogging since Carson and Cooper were born - and they will be 4 in November.

Good luck and Happy reading.


My little friends, Thomas and Mikayla

As many of you know, we just arrived home from the most fantastic gala. The Jorge Posada Foundation gala in NYC was amazing. It brings tears to my eyes to see how many wonderful people turned out to help raise money for Craniosynostosis. The Posada's are truly a blessing!

Anyhow, I will write more about the gala in the next post, but I wanted to share something else with you first.

At the gala we met so many wonderful families who have all suffered like we have. These two touched me the most.

This is Thomas, and he has craniosynostosis.

And this is Mikayla, and she has craniosynostosis

Please take a moment to read about their journey.



We are packed and ready for our adventure tomorrow out to NJ to see my grannie and to experience the Jorge Posada foundation gala in NYC on Thursday! Just wish the rest of the family could join us. I will post after the gala on Friday.

This trip is going to be bitter sweet for me. SO excited for Carson and Cooper to be invited the the JPF gala, but I'm really sad that I am going to miss Riley and Keegan's first soccer game this coming Saturday!


First day

First day of school, and first day of soccer.
First day of FIRST grade
Keegan, Mrs. Toonen, and Riley
Riley, Bill McClone (principal), and Keegan
The "Quad" squad
Alex, Elizabeth, Riley, and Keegan
The "new" Mia Hamm

To you, my sisters of Special Needs Children

To you, my sisters of Special Needs Children

By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores.

I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasound’s. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, and “the”" treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated insane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “Welcome To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.