Sunday, March 27, 2011

Surgery Day & the amazing People involved

The day of Alexis' surgery, we had 9 people there the whole day.   My dear friend, Alyssa Marie took time away from her family and young baby (that happens to be my "God-Daughter)!

Alyssa was a blessing from God. She thought of everything! Brought me a sweet journal to keep track of everything and a Whole Picnic basket of food.

That came in handy especially when the Child Life Specialist told me that I need to go eat something cause I was looking "FAINT"! We went in the empty room next to Alexis' and I quickly ate a part of a bagel, some grapes and a soda to stay awake.
Been a long 8 weeks. I hadn't slept much at all!

My mother, aunt Phyllis and dear, sweet friend, Shannon were there as well. And last but not least, Chris & Curt.

I can't say good enough things about Sacred Heart Children's Hospital! They were wonderful. One nurse was a little "persnickity", or whatever you want to call it. She wasn't my favorite. But we didn't have to spend much time with her, thankfully!

The Oncology Unit was OUTSTANDING!!! Everyone on it was above and beyond GREAT! The nurses, Child Life Specialists, the Art Program (Ann & Sironka!), just everyone!

Thank you so much Sacred Heart for everything! May God continue to bless !

Just waiting for the surgery....take your time, gave us a little longer with Alexis

Alexis wanted Mommy to give her the Versed

Versed works well but didn't last for Alexis

We had "loving" Grammy at hospital

Cute Tigger Scrubs ~ Alexis got a gift & it was Tigger, how sweet!

Holding Tigger tightly! Thank you :)

Alexis got a sticker for doing Vitals so well :)

Ta Daaaa! Ready to fight Chiari to the end!

Vitals and check in before Surgery March 14 2011

Best Nurses ever!!

Vitals done now waiting to go back to room :(

Drawing by ALEXIS, reads: Alexis Has Scoliosis Please Help!

She drew this day before surgery, was scared and asking for help! Bless her heart!

Recovery room to Pediatric ICU

Wheelin my baby to Intensive care

ALEXIS ICU PICS :( MY Sleeping Beauty & Angel

My baby girl all hooked up :(

mommy 1st glance at her head..*sad*

In pediatric ICU Monday-Tuesday

Face & eyes swelling from the rods put in & being on face thru surgery

Saturday, March 26, 2011

My Chiari Princess Warrior! And my personal ANGEL!

I love this girl more and more by the second, Thank you, GOD!

Franklin Elementary School!

I have to say that Franklin Elementary must be THE BEST SCHOOL EVER!! All the teachers are amazing! Especially, Mrs. Schell! WOW, I'm blown away with all the continual support we have gotten from them.
Mrs. Schell should get the TEACHER OF THE LIFE TIME AWARD! What an amazing beautiful woman!
Thank you so much for everything! No wonder Alexis LOVES this woman so much!

We have been getting endless emails, phone calls from everyone at school! Alexis has been receiving so many sweet cards from all the children.

I can't say Thank you enough! My heart is just filled with so much love to everyone!

Removal of Alexis' bandage! OUCH!!!! My poor sweet girl!

Aww, worst thing seeing your child in pain! God has big plans for my girl!

Tuesday, March 22, 2011

Hospital visits from school-mates!

Kaitlyn and little Austin made it to see Alexis :)

Big Hugs...made Alexis' day!

Putting a smile on her face...

Monday, March 21, 2011

Uneven legs!!!

Actually, it is uneven hips causing her legs to be uneven!

Waiting to meet Dr. Ling....examining the skull, spinal cord! March 8th 2011

Wow, interesting stuff!

LOVE THIS GIRL AND HER SMILE !!

The nurse doing the physical exam...

Yep this is what a spinal cord looks like....

Sunday, March 20, 2011

At the NS office March 8th 2011

Reading with her daddy while waiting to get the results!

Filling me in on what they are reading!

Very into her book! :)

Gifts from the 2nd grade Class Pre-OP

Alexis received some things from the 2nd grade class, well all but one!

She got a picture of her classmates and lots of goodies!!! :)

Week of March 9th 2011

Alexis just had haircut before her big day!

Just met with DR. Ling for 1st time, would love to say it was pleasant but, got the bad news !

Her gorgeous hair! :)

Alexis and Sunjeong on the field trip to Pickard Orthodontics. And Alexis' last day at school for awhile!

Sunday, March 13, 2011

Tomorrow is the big day! March 14th...

So we will be on our way to Sacred Heart Children's Hospital, Spokane, WA.

We're leaving at 8am.

Many have been asking, and I will have my phone on me....either I will answer, get back to you or text ya back. I have a dear friend there who will be trying to do all of this if I won't be able to, so don't be surprised if she answers my phone! 509-336-9354

This is the # for Sacred Heart Children's : 509-474-3049 or 509-474-7572

Today was a rough day. But it helped having the church do their prayer over Alexis. Thank you Real Life!

I appreciate all the help, food from Val, and Karen helping with my little Misty, Alyssa and everyone else!

All the prayers and kindness from around the world that I have received is sooooo appreciated!!! Many people that I have never met face to face have been expressing their kindness to me! We do appreciate it!

I'll try to update as I can. I am sure I will be taking photo's. I hope people understand, that is the way I am....I'm a scrapbooker and I photograph a lot!!!!!!

Much love from Christopher, Alexis and I

God bless!!
Praying for a Cure for Chiari/Syringomyelia!

Alexis' VIDEO Journey Scoliosis, Chiari, Syringomyelia

Saturday, March 12, 2011

A kid's-eye tour of the Children's Hospital

Pediatric Neurosurgery

At Providence Neuroscience Center and the Sacred Heart Children’s Hospital, the special needs of children are met with compassion and expertise to provide the highest quality of care.
We are recognized as a leader in the diagnosis and treatment of complex neurological problems of infants and children, including:

Brain tumors
Cerebrovascular surgery
Closed head injuries
Epilepsy
Neurological infections
Severe brain and spinal injuries
Spinal disorders

The unique resources of the Children’s Hospital’s comprehensive, state-of-the-art pediatric neurosurgery program include:

Level 2- trauma service
Pediatric units that allow 24-hour parent interaction.
Child Life Specialists address the psychosocial and developmental issues of children in the hospital setting.
Pediatric Intensive Care Unit staffed by Pediatric Intensivists.
Neonatal Intensive Care Unit with Neonatologists available full time.
Neurosurgical operating room with highly specialized equipment, anesthesiologists and specialty trained personnel.

Dr Ling ~ our Neurosurgeon for Alexis

Benjamin C. Ling

Accepting New Patients

Practicing in Spokane since 2003

Specialties

Neurosurgery Neurosurgery - Pediatric

Board Certifications

Neurosurgery and Pediatric Neurosurgery.

Education

Medical School: Ohio State University - Columbus, OH

Residency: University of Cincinnati - Cincinnati, OH

Fellowship Pediatric Neurosurgery, Cincinnati Children’s Hospital

Memberships in Professional Organizations

American Association of Neurological Surgeons
International Spine Intervention Society
Spokane Pediatric Society
Spokane County Medical Society
Washington State Medical Association

Clinical Interests / Special Procedures

Spine Surgery, Pediatric Neurosurgery, Vascular Neurosurgery, Interventional Pain Management.

Surgery March 14, 2011 Noon

Alexis is scheduled for her surgery March 14, 2011. She will be in Sacred Heart Children's Hospital. The surgery is at Noon.
They will be removing a small part of her skull, & vertebra. Yes, I'm freaking out here. They won't be replacing what they are removing. They are hoping that this will drain the large Syrinx in her spinal cord. We are hoping & praying this works. If it doesn't they will have to do another procedure to get the syrinx down.
The Chiari is measured at 7mm. And the Syrinx is from C3 ~ T10. It is very large.
Keep Alexis in your prayers! I can't imagine how she must feel. Most adult's don't go through all that she is going through. She is very brave and my hero!