China 2012

Happy New Year! We spent last night just hanging out with some of our best friends. I couldn't think of a more perfect way to welcome 2012. Ellery rang in the new year with us for the first time too, which was fun.

I have never made New Year's resolutions, but this year I have 4 areas that I desire to make some adjustments/improvements. Spiritually, I will read through the Bible in 2012. Chronologically this time. Physically, our family is on quite a health journey. I have always been one to ask why and challenge the status quo, and so researching is a natural role for me. I want to dig deeper this year and hopefully blog about it as well. As a mother, I want quality time with each of my littles. I want to joyfully take the time to sit with them, play with them, and converse with them. I do this already, but want more of it in 2012. Our lives seem to get busier and busier. And finally, some goals for our marriage as well.

We are starting 2012 off with a bang with our trip to China. Here is our specific list of prayer requests. We would be grateful if you would pick one or two and pray for them as the Spirit leads.

(oh, and just to add, there will be someone at our house at all times while we are gone. so this is not an invitation to plan a break-in. sorry, that was part of my fear in posting our trip online.)

• Trips to and from China

• Nurses, therapists – everyday caregivers

• Doctors who will make decisions on treatment

• Doctors who will perform the anesthesia and lumbar puncture procedures

• Days of lumbar punctures and the recovery – 6 hours of lying still post op

• The actual stem cells that will be used (divinely selected, safely harvested and stored, properly administered in procedure, etc.)

• Effectiveness of stem cells once they are in Price’s body (that they would be accepted by his body, that they would find the problem(s) and HEAL, that they would make their way to his brain)

• At least one new motor skill and improvement of all existing skills

• Relationships with medical staff and other patients and their families

• Decision making while in China, clarity of thought, unity

• Being apart as a family

• Living conditions and attitude while in China. Lots of down time in hospital and cut-off from friends and family back home; time change

• Street and Ellery’s time at home (protection, health, etc) and for our families taking care of them

I had a moment of maybe this is a bad idea/we shouldn't go. That same morning Price fell flat on his back or on his face literally 5 times in an hour. He was desperately trying to keep up with his brother and explore, but it's just plain harder for him to do so. He would pull up on something and then lose his balance, cry, cry harder when I applied ice on yet another goose-egg of a bump, and then get right back up and go at it again. He is one determined boy and deserving of a just as determined mom.

Thanks again for journeying with us. Happy 2012!

Merry Christmas!

For unto you is born this day in the city of David a Savior, who is Christ the Lord.

Luke 2:11

Acceptance-with-joy

Ellery woke up this morning and declared, "I'm so glad I have two brothers. And that one of them is extra special. Brothers are the best. I could have had sisters but I get to have brothers!" She then proceeded to jump all over the couch and slide down the makeshift slide she had created as both of her little brothers watched in awe and then eagerly followed in her footsteps. It was one of those moments where I really took in all that she had so joyfully uttered and thought to myself that I'm so very blessed. I also thought to myself that this is the thankfulness and joy the Lord desires from my own heart. Thankful for every blessing, every struggle, every pain, every joy because they all ultimately bring me closer to Him.

Christmas time has been hard for us the past couple of years. The first year, we were awaiting some pretty intense genetic testing results for Price, and then this last year we had been hit with the devastating news that the neurologist wanted to test him for degenerative conditions after a not-so-stellar MRI. We spent most of the holidays waiting for a phone call.

This year we are in a much different position, but waiting nonetheless. We are preparing our family for a trip to China. Our family will be apart for over a month. I have no idea of what to expect or the emotions I will feel knowing that for some of that time my boy will be having medical procedures done without me by his side. Or how much I will miss my "bookends" while I am on the other side of the earth.

I do know that this Christmas season, I am truly at a place of acceptance-with-joy. I accept with joy the life the Lord has planned for Price, whatever it may look like. I accept-with-joy the possibility that stem cells won't do a single thing. I accept-with-joy that this trip could be for some completely other reason than for Price. We do know that the Lord has illuminated this next step in our journey and so, like my daughter, I want to have a heart that overflows with thankfulness and joy at what the Lord desires to do in China.

{Nevertheless, OBVIOUSLY we are praying for the Lord to use this trip to bring healing to our boy. I think I will post the list of specific prayer requests we are giving to our friends and family. We would be grateful for your prayers for our family.}

This boy

is 14 months old already

has started climbing and jumping

shakes his head for no and for yes...it's a pretty funny sight

does the happy feet dance when he's frustrated

loves itsy bitsy spider and doing the hand motions

calls lulu "wuwu"

airplanes, birds, trucks, vacuum cleaners, dogs, squirrels...a few of his favorite things

loves to put his hands over his eyes and then shout, "Boo"

says the sweetest "bye bye"

gets into everything and then some

likes to back into things and go in reverse

is so goofy and makes everyone laugh

takes a bite of his snack then offers some to his "bro bro"

is always wanting to eat

loves to throw away trash and "clean"

woke up with a black eye this morning...a fight with his bed maybe?

Pictures with Pipes (and Lulu and Poppy)

Goodlight Photography

Our favorite chicken

I usually make this once a week. It is a hit with everyone!

3 pounds of chicken (either breast or thigh)

1/2 cup flour, gluten free

1 tsp natural salt

1 tsp paprika

1/4 tsp sage

1/4 tsp ground black pepper

1/2 cup of unsalted butter

Preheat oven to 375 degrees. Mix the flour, salt, paprika, sage, and pepper together and put in a plastic bag. Add the meat to the bag and shake until well coated. Melt butter in a 9x13 baking dish in the preheated oven. Place coated meat in baking dish and bake for 15-20 minutes on each side.

Enjoy!

China

3 months ago, the whole family is in the car taking Ellery to school, when Nathan blurts out, "I think I want to take Price to China."

Come to find out, he'd been praying and researching about a type of stem cell treatment that has had some success in helping patients with ataxia.

Umbilical cord stem cells. Ataxia: uncoordinated movement (in Price's case most likely due to cerebellum issues).

Yes, we have banked both boys cord blood but are unable to use it due to P's lack of diagnosis and inability to qualify for an FDA trial. Believe me, we have exhausted this avenue. Maybe at some point in the future.

Nathan and I prayed, skypped and talked with families all over the world. We waited for a red flag, a concern. We debated, what would P want?

This is not without risks. It's scary. But we believe it might be worth it.

Our tax return came back the highest ever this year. We rejoiced that it would help pay for treatment.

We prayed and prayed some more. We cried. We talked. We planned.

We are going. 30 days in China. 30 days of medical treatment, physical therapy, and so much more. 30 days of befriending people from all over the world who are in need of hope.

Yes, we hope that this treatment will offer P a better future. Not because we don't think he's perfect just as he is, because we do. But, because we want the world for him. We'd do anything. Go anywhere. To the ends of the earth. But, OUR hope is in the Lord. For, there can be no healing apart from Him.

Thanks for journeying with us. Definitely to be continued.