Merry Christmas!

From our family to yours, we hope you have a Happy Holiday season!

Your many reasons

Here is a video my friend Amy is working on for CAPPS. If you need a reason why to donate, here are just a few!!

Keep your eyes open for Carson and Coopers pics!

To hear the music, go to the bottom of my blog page and pause the Christmas music.

Photo and video editing at www.OneTrueMedia.com

We've got spirit Yes we do, we've got spirit how about YOU?

We've got more, we've got more......

Nothing like decorating Christmas cookies with 4 YA-HOO's!

Please help us!!

Dear friends:

Many of you that we have had our fair share of hard times (medically) in the last 4 years. Carson and Cooper (and recently Keegan) struggling with Sagittal and Metopic Craniosynostosis:

(The sagittal suture runs from a spot at the front of the head to the back of the skulI. Fusion of the suture results in a long, narrow skull with or without bulging of both the front and back of the head. Surgery of sagittal craniosynostosis involves removing the suture and widening the skull by opening up the coronal and lambdoid sutures on both sides of the head. Sometimes bone grafts are placed to keep the out-fractured bones apart. Metopic The metopic suture begins at the nose and continues superiorly to meet the sagittal suture. Metopic craniosynostosis results in a narrow, triangular forehead with pinching of the temples laterally. Treatment involves releasing the suture and expanding and rounding out the upper face, forehead and skull)

and Carson, Keegan, and Riley with Chiari Malformation:

(This malformation occurs during fetal development and is characterized by downward displacement by more than four millimeters, of the cerebellar tonsils beneath the foramen magnum into the cervical spinal canal. This displacement may block the normal pulsations of CSF between the spinal canal and the intracranial space. This form of Chiari malformation may be associated with syringomyelia/hydromyelia. It is diagnosed more commonly in adolescents or adults.)

All in all, we have been through 13 surgeries in the last 4 years. That is way to many for anyone to have to go through.

As many of you may not know, there is NO CURE for either condition. I know for a fact, that there is slim to no fed money going towards Chiari research. As for Craniosynostosis (premature fusion of the skull bones), It is up to each and every cranio family to help spread awareness!!

To do this, I need YOUR help! My dear friend, Amy, President of cappskids.org, is trying to get an awareness walk planned for the fall of 2010 in NY. To do so, we need 100 people to raise at least $100.00 each! Just to get the walk off the ground.

Please, we are in the season for giving right now. If you could donate at least $1.00, that would get us closer to having our walk for Craniosynostosis Awareness

To donate, please click the LINK in the upper left hand corner of my side bar that say Craniosynostosis Donations HERE

Our family, and so many of our Cranio friends, THANK YOU from the bottom of our hearts!

*If you donate, please leave me a comment, you don't have to mention the amount, just your name.

Many of you may not also know, but I am the sponsor coordinator for CAPPSKIDS. I help match families going through surgery with families that have already been through surgery with a child. It's sort of a mentoring program.

Snow Storm Allison - December 8 & 9, 2009

Thanks for the 14+ inches!!

Christmas is a time for giving, right?

My friend, Michelle and her beautiful family could use your help!!

Here is their story (Michelle and Brian have 3 beautiful children; Karly, Braden, Ruby (who's twin died before birth and has Down syndrome) and a beautiful Angel daughter, Lydia.)

"New Adventures
Last week, this beautiful little girl started showing up across the Internet, on many DS blogs:

Little Lera was in danger of being institutionalized. Look at that beautiful little face - she deserves a home and a family. It wasn't her choice to be born in a country where she has no value in society.

I just couldn't look away; I worried about her day & night. She had about a week to find a family. I contacted Reece's Rainbow, and told them if they can't find her a family, let me know.

Brian & I had always talked about adopting SOMEDAY - but we had thought we'd adopt a younger girl - SOMEDAY.

A couple days ago, word went around that a family had committed to Lera. I was so relieved - and a little sad that she wouldn't join our family. Then, I was THRILLED to find out Lera will be going home to my friend Tracy's home! Lera's journey will be followed on her new adoption blog!
This experience definitely triggered some interesting conversations between Brian & I ...

We have a house set up for a family of 6. We were prepared to have 4 children, and losing Lydia leaves a permanent empty space in our home.

We know we can never replace Lydia. Her loss will always be with us.

And we're very certain we don't want to have another baby; going through a pregnancy would just be too stressful. Too many reminders of what could go wrong.

And yet, we're missing a daughter, and what would be the best way to honor her memory? By keeping an empty chair at the dinner table, or by bringing home a child who doesn't have a family?

After all the discussions we'd had about little Lera, it suddenly became clear to us that were we to adopt, we'd want an older child - someone between Ruby & Braden in age, a little girl who would otherwise be destined to being sent to an institution and left there with no future. This would keep Ruby our baby, and another little sister for Karly & Braden.

We figured we'd start planning & saving up - and adopt when the time was right.

I told Brian to check out the at-risk girls on the Reece's Rainbow website. There were a few that stood out to us, but one who repeatedly drew our attention.

.
For one thing, she is a twin. She was given up at birth for having Down syndrome, but her twin was taken home. We lost a twin - and this little girl is a twin without a family. We lost Lydia, and found a little girl named Lilya.

Most children are sent from their orphanages to the institution at the age of 5 - Lilya turned 5 in August. It's amazing that she's still available for adoption.

So, we can't sit aside and wait and plan. We have to just jump in and go for it - and bring this little girl home. To our home, and make it her home.

Yes, it's expensive - but what is a life worth? It won't be easy, but the best things rarely are.

This is Lilya - soon to be Lily.

Our daughter Lily. "

So, with all that said, the Zoromski's are having an Auction to help raise money to bring Lily home, Please if you are looking for Christmas gifts, please go and check it out. Every penny will help.

* Auction ~
Our auction to help raise funds for Lily's adoption started today on Lily's blog. It will run until next Tuesday, December 15. Please check it out - and if you could pass the word around, we'd really appreciate it!

We have so many really cool items - something for everyone!

http://ahomeforlily.blogspot.com/

Let the Holiday Season begin!

Appleton Christmas parade!

Here is Riley(grey sweatshirt, letter M on her back, hat), Papa, and Sam running their little hearts out - 1 mile! They made it! I think the dilly bar at the end gave them a little added motivation!

The rest of the world running with them.


I love the downtown Angels

Appleton is home to Pierce Manufacture ~ Fire trucks



My High school band

Wish I could have gotten a picture of all the leg lamps in the window ~ PRICELESS

Good New, FINALLY

Yesterday we were in Madison to hear the results of Riley and Carson's MRI's that they had done the week prior. Dr. I had nothing but good things to say.

We still aren't sure why Riley is having the back/ spine pain, but as long as it is nothing big, we can deal with!!

Both girls are on a "as needed" schedule or again in 1 yr!! yeah!!

Now, to put all my focus on Keegan!! We will be back in Madison on Thursday for his EMG.

I'm Here (waving)

As most of you know my life barely ever stops for a tea break, or even a "pee" break for that matter. I can not believe how the time has flown by. It actually make me really sad that time flies by so fast. Before I know it, my kids will be graduating and off on their own with an agenda to be conquered. Ugh.

So anyways, I'm sure many of you are asking, "where have you been?" This is where I've been.....

~Last weekend, Carson and Cooper turned 4 yrs old (see what I mean about the time flying by?)

~Last Tuesday, Our friend Katie had her chiari surgery and I am happy to announce that she is home and doing well.

~Last Wednesday, Keegan and I were in Madison. He had an LP done with his neurologist. He did really well. We got home around 8:30pm

~ Last Thursday, My self, my mom, Riley, and Carson ,headed down to Madison at 4:30 am for Carson MRI and bladder/kidney ultra sound at 830a. Then we sat around and waited for Riley's MRI at 1:30p. We 4 girls lived in a post op waiting room which was probably like 10X10 for a total of 11 hours that day. Mean while, at 10am I got a call from Matt that Keegan is struggling with head pain and need to be picked up from school. Great. I made my phone call to the neurologist and she explains to me that he probably is having a spinal headache from a CSF leak. He is to lay completely flat for 48 hours and pump the fluids.

~ Last Friday, Neither child goes to school and I am home with all 4. 3 that are over tired and 1 that is not supposed to be lifting his head up at all. RIGHT! Come evening time the pain is so bad, I call the "on call" nurse and she insists that I take him to the ER immediately. He and I packed up, I SO broke the law by letting him lay on the floor of the van Vs his eyes popping out of his head by sitting in his car seat but shhh, don't tell. We get to the ER, they get him in right away, we explain everything, they get an IV started with some fluids, good pain meds, and caffeine. We were there for about 3 hours and then they told us he "should" be better by the morning.

~ Saturday morning arrives and he is NOT doing any better. This time I call his neurologist in Madison in hopes they will do something more for him. They send us back to the ER, the ER doc and the neurologist speak, and we are admitted, hooked up to an IV, and laying flat. Life is good while laying flat, but once he is up, the pain is back. We were told that with the IV we would be there at least until Monday. Swell.


~ Today, IV meds aren't doing it. They asked if we wanted to be at home laying flat or in the hospital laying flat until Wednesday. Keegan I both voted to go home. Now, we will lay flat until Wednesday and hope to god that things get better. If not, Wednesday we will contact the neurologist and we will go from there.

So.....that is where I've been. How about you???

Prayers and Birthday wishes

Happy Birthday to my babes who just turned 4 on Sunday!! I can not believe how the time is flying by!!

HAPPY BIRTHDAY kiddos!

Also, please keep our friend, Katie, and her neurosurgeon, Dr. I, in your prayers. Tomorrow, Katie will undergo her chiari decompression surgery at 12:30pm.
Here is to a successful surgery and to a quick recovery! See you on Wednesday and Thursday!

We know you are in good hands!!!

More Fall, Please

10 day count down....

Oh, 10 days for now my little guy are going to be 4!!

HOLY SMOKES!

Please join me as I take a glance over the last 4 years. (Sniff, sniff)

Cooper, twin A, born at 4:59pm

weighing in at 3 lbs 13 oz 16 in. long

Carson, twin B, born at 5:00pm

Weighing in at 4 lbs .4 oz 16 in long

Cooper "tanning"

LOVE this picture of Carson tanning

Happy Halloween

From:

Bumble Bee, the cheerleader, the urban diva, and The Thing ( Fantastic Four)Oh.... and Jake, too!

Pictures with Katie

Thanks for playing with us, Katie!

Comment

To the reader who left this comment:


"I have a child that has gone through a Chiari Decompression, fuse of c1 & c2, scoliosis correction and still has a remaining syrinx in the spinal cord. In reading what I could on the swine flu vaccine & GBS (, I don't know that his body could recover from more slowing of the cerebral fluid - which is what I read was a reallity with GBS(Guillain-Barre Syndrome). His syrinx is still there today (10/09)according to the presurgery MRI's before his scolliosis surgery in March 2008, and the original chiari correction was done in spring 2006. The chiari has significantly gone down but some sections on the spinal chord are still the same size. Anyway, my question / thought is that I shouldn't get the vaccine for him. I just don't know if his funky cfs flow due to the syrinx could handle any more sluggishness from a flu vaccine. Opinions would be appreciated. I am a new widow and trying to do this on my own. Thank you in advance".

Would you email me at ladybug_wi@yahoo.com and we can chat!

Thanks!

A day with a friend..

...the sun

Update

Since Keegan was "down for the count" with the flu last week, we had to cancel his LP and EMG in Madison.
We heard yesterday that they have both been rescheduled. His LP will be on November 18th (Riley and Carson's MRI is on the 19th) and his EMG is scheduled for Dec. 3rd.

Praying for answers.......

Also, you may have noticed my new ticker to the left. Our friend, Katie, will be having her chiari decompression surgery on November 17th with our same team. Please keep her, and the surgeon, in your prayers.

H1N1 vaccine

H1N1 Swine Flu Vaccine Insert Admits It Causes Guillain-Barre Syndrome, Vasculitis, Paralysis, Anaphylactic Shock And Death

The package insert for the Influenza A (H1N1) 2009 Monovalent Vaccine manufactured by Novartis has been leaked on the Internet. According to that package insert, the vaccine (based on an earlier vaccine product known as Fluvirin) is known to cause a whole host of very nasty side effects such as guillain-barre syndrome, vasculitis, anaphylactic shock and even death.
Of course anyone who has been studying vaccine side effects already knows that it causes all of these things, but the story here is that the insert for the swine flu vaccine itself is admitting all of these things. The insert says that it was updated during September 2009, so it reflects the very latest information.

You can read the package insert for this vaccine for yourself right here.....

http://www.fluscam.com/Vaccine_Package_Inserts_files/Novartis_A-H1N1_2009_Monvalent_VaccinePackageInsert_BasedOn1980Approvalfor%20Fluvirin_UCM182242.pdf

Recent life

Do not take this path.....

....or you will find this

Got H1N1?

(Unofficially Dx by the nurse on the phone)

But not these 2!


Love Fall? You have got to go check out my girlfriend Molly's Blog
Pictures to DIE for!

Help spread awareness

Here is an obit of a woman who just died of chiari malformation and other conditions that go hand in hand with it. We need to find a CURE for this condition, and spread awareness!

http://www.legacy.com/obituaries/deseretnews/obituary.aspx?n=kelly-morrill&pid=134320970

Baby

Meet Mackenzie Rayne Zepka