March is Hemophilia Awareness Month!

"I'm sorry."   "What if they get a scratch?"  "Will they bleed to death?" 

"Are they going to grow out of it?"  "How do you handle it?"   "You mean you give them shots in their  chest at home? Four days a week?" 

Meet Elias and Emmett. They both have hemophilia--severe and Type A. In other words, they are missing a important protein in their blood that helps give the "stickiness" when forming a clot when a blood vessel is broken. They do not bleed harder, but longer.

Please do not be sorry for our boys. With all the advances in medicine and technology over the past 30 years, they will live long and healthy lives as long as they keep up with being smart and healthy. No, they will not bleed to death with a small scratch, cut, or scrape. The scariest thing for these guys is internal bleeding. Bleeding into their joints is common and can be very destructive in the long run. And yes, if they bleed onto their brain or vital internal organs it can be life-threatening. And no, they will not grow out of it. At this point we pray for a cure. Overall, we all handle it pretty well. We try to keep the boy's lives pretty normal by letting them do pretty much anything, but they know that they have to get their factor, yes--four times a week. It adds a little more chaos to our morning ritual on those days. Check out our set up. Elias was glad to demonstrate how we rock the factor train….

Sterile field ready to go. First kid to go picks the cartoon!

Clean it up

Factor Up

Push in the caboose (heparin lock)!

KEEP CALM
and
FACTOR UP!

A Very Cali-Christmas

For Christmas this year, we escaped the cold days and nights of Indiana and headed to much fairer weather in California to visit Opa, Oma, and Uncle T.

 The little monkeys got their first golf lesson on Opa's new putting green...

 Christmas morning was filled with lots of toys from Santa!

Someone was "Nice" this year!

We got to spend lots of time with Uncle T, Miss Morgan, and of course the newest Stowers family member, Bonnie the dog!

Elias got to play Nintendo for the first time.

Uncle T popped the question and Miss Morgan said "Yes!!!!"

No holiday is complete without a little hemophiliac monkey wrench. Right before leaving, Emmett developed a bleed right over his port. This meant that Mama could not access it for over a week and we had to venture into LA to the hemophilia treatment center for factor. 

Uncle T got to mix and push the factor. Then we treated Emmett to a California delicacy…..In-N-Out Burger. 

I think he likes it.

 To round out our hemo-status, Uncle T took us to visit the Advate Factor Factory at Baxter where he works. It was so cool to see how the magical juice is made to keep our boys healthy.

What California Christmas is not complete without making sand angels?

Or pretending to be Spiderman?

 Lastly, us artisans ventured into Hollywood to catch a viewing of the Lion King musical at the fabulous Pantages Theatre!

 Merry Christmas everyone!

Port-Te-Port

(pronounced in your best Swedish chef accent...)

There comes a time in a young man's life when he wants to get out and explore his world. Well Mr. Emmett, since you have hemophilia and need your factor medication more often now to protect your joints and organs, let's get you a port of your very own. This allows Mama to get you the medicine you need to conquer the world, just like your big brother.

Pre-op

Riding in style off to the operating room

Post-op: Did great!

Slept day of surgery 

Cool toys from the Child Life Lady!

Peyton, thanks for such a cool hospital!

We had wonderful nurses, especially nurse Kristin and nurse Mehgann. They were the best!

Caged.

Dancin'

Oma came all the way from California to visit me!

Going stir crazy!

Check out my new gear!

Watch out world! Introducing a toddler on the loose and fully factored up!

Hiking for Hemos--Hemophilia walk 2013

Today we were Blessed with a beautiful Fall day. Cool, crisp and sunny morning. What better way to celebrate but to walk for a cause. A cause so very near and dear to our hearts. We want safe and effective treatment. We want equal opportunity. We want a cure.

Ryan White's mom and Val Bias, the president of NHF joined us.

Getting ready for his first (really second) walk.

Strollin' Daddies

We are happy to have raised $1500 for research and awareness. Thank you to all that came out and supported us...