A Beautiful Portrait of Ava is on Display at The National Insitute of Health

This past spring, I met an Amazing Mama Bear, Patty. Patty is the executive director and founder of Rare Disease United. Their "mission is to build a strong rare disease community throughout the United States so that we may help to provide support and information to our families, raise awareness and advocate for our families." To help raise aware for rare diseases in children, Patty created the
"Beyond the Diagnosis" art exhibit.
Here is some info about this amazing exhibit dorectly from the Rare Disease United's web site:

"The Beyond the Diagnosis Art Exhibit’s focus is the rare disease patient. Artists have donated their time and talents to paint rare disease patients for this groundbreaking Exhibit. This beautiful Exhibit is traveling to medical schools, research institutes and hospitals around the globe encouraging the medical community to look “beyond the diagnosis” to the patient. With an average diagnosis time of 8 years and few treatment options, doctors and rare disease patients need to have a more engaged approach to reduce diagnosis time and improve care.

Art has been used for thousands of years to successfully convey a message, whether it be a story or a glimpse into the human spirit. At Rare Disease United Foundation, we believe art not only leaves a powerful and lasting visual imprint, but creates a unique connection for the viewer."

This week has been a very exciting week for Patty because 12 pieces from the "Beyond the Diagnosis" exhibit have gone on display at the National Institute of Health (NIH). It's also been an exciting week for us because Patty has included a beautiful portrait of Ava in the exhibit. Achondroplasia Dwarfism is considered a rare disease. The portrait of Ava was based off of a beautiful photograph of Ava that was taken by our good friend Sara Ganaway.

Here's Ava's portrait hanging in the National Insitute of Health and below it the photograph of Ava taken by our friend Sarah Ganaway. I will post close up picture of the portrait soon. 

~Nancy

So, Ava is really excited about becoming a big sister...

So Princess Firecracker is super excited about Emma. She is always asking "when are we going to get her, can I show her how to do this, can we take her here." I keep reminding her that it's going to be a while still, that we probably won't be able to go get her till after summer, but still everyday she asks, "when will we get Emma momma? Seeing her excitement makes me happy." Shannon, our llder daughter is pretty excited too. She began telling our friends about Emma before I had a chance.

So, earlier today, I posted several doodles or pictures Ava drew recently. She has always liked to draw or paint. A lot of people have been rather impressed with Ava's creations. She loves to use lots of color and she favors abstract design. A few people have suggested selling her art. So after I posted her latest creation, I got an idea. Shannon is a talented artist too, so I talked with both girls tonight. Shan wants to go into 2 and 3D animation, she loves to draw characters on the computer and she is really good at it. Both girls are going to offer up some of their art for sale to help raise funds for Emma's adoption.  The project is still in development, but I think its going to be a lot of fun for Ava and Shan. They both just lit up at the idea of being able to help bring Emma home. Please stay tuned for more details. Here are a few examples of their work.

An Update On Emma

We got some news on Emma that she may have a hearing impairment. During a recent medical evaluation she did not respond to sounds. Although this is a bit discouraging, we know things could be worse. The team caring for her is going to see if they can have Emma's ears and hearing thoroughly evaluated. In children with Achondroplasia it can be common for fluid to build up in the Eustachian tube in the inner ear and there can be issues with wax build up in the outer ear. When Ava came home from China, she had TONS of fluid and wax in both of her ears. A good cleaning and a set of ear tubes helped Ava tremendously. We are hoping that will be the same case for Emma. But until we know for sure, we are going to learn baby sign language and we're hoping her caregivers in China might be able to teach her some signs too. We figure even if her hearing is fine, learning sign language may hopefully bridge the language gap until she knows English.  Would mind keeping Emma in your thoughts and prayers as we wait to hear news about her ears?  Thank you...

Think about this...

The financial reality of adopting from China : Reece's Rainboww

One of the biggest challenges to an international adoption is the cost. The expenses for Aliza's adoption is estimated to be around $42,000.  This cost will include travel fees for Brian and I, Ava, Aliza and we are hoping to bring someone else along with us as a Nanny to help with both girls. Ava is very attached to us and we really have no idea how things will go with Aliza in those 1st few days with us.  So, we feel it will be a good idea to have an extra person with us to help. This cost is what almost kept us from proceeding with Aliza's adoption. But after praying for guidance about if we should proceed with the long and expensive process of making Aliza our daughter, we received several obvious signs that Aliza is God's plan for us.  This is the 1st time that Brian and I have ever taken such a big leap of faith.  Several friends of ours have generously volunteered to help us fund raise. THANK You Friends!

We do have several ways you can donate to our adoption fund. The 1st is through Reece's Rainbow. Click the link posted in our right side side-bar to make a TAX DEDUCTABLE Donation.


YOUCARING Fundraiser: https://www.youcaring.com/let-s-bring-emma-home-500214
This is another site where you can make a Tax Deductible Donation. Please note, we can't change the address of this donation sight. It was created before we changed Aliza's name.

Thirdly...

Adopttogether.org/Gehrung is another way you can make a Tax DEDUCTABLE Donation.


Any size contribution to our funds will help and be sincerely appreciated.  If you are unable to donate, could you please share our blog or fundraisers with your friends and family either through email, Facebook, Twitter, any other social media you use or even in person?  Here is our contact information in case you want to contact Brian or me.

Nancy, 262-844-8090, Nancy.gehrung@gmail.com

Brian, 414-719-9262, Bgehrung67@gmail.com

Lastly, please feel free to join our Facebook Page, Gehrung Family Fundraisers, there we are selling several items, our Super Hero Capes and BRAVELETS!!

 Again, Thank You!

Nancy

Hi. Welcome! Some of you may have been following our story over at "A Little Love From China" which is our blog about our adoption of Ava Rose aka "Princess Firecracker". Ava has been home with us now for 4 and a half years. These last 4 years have been an adventure to say the least. There have been many wonderful, amazing and happy moments, but there have been many scary, stressful and hard moments too. It's because of all these moments that I left the blog hanging so to speak. On this new blog, I will be bringing you up to date on all things "Princess Firecracker" AND I will be writing about all our NEW adventures too.

So, let's get started.

In a nut shell, here's what has been keeping us busy...

About a month after we brought Ava home in June of 2011, we found out that Ava had a stroke. The doctor told us it was massive, that it affected 75% of the left side of her brain.  We were also told, that if Brian or I had the same stroke as Ava did, that we would be left completely paralyzed and unable to speak.

The doctor told us that she had right sided Hemiparesis, mild Cerebral Palsey, that she would be cognitively and physically delayed and that she could have seizures. Well sure enough, about a month later, we saw her have a seizure. It probably wasn't her 1st seizure, but it was the 1st seizure we saw. We later found out, she had an Absante Seizure, the quiet, stare off into space type of seizures.  We were stunned all this news. So were her care givers in China.

And so began our journey into the world of Epilepsy. Within the first year or so of dealing with Ava's seizures, Ava had several out patient EEGs and was put on several different medicines none of which helped. We also learned that her seizures were coming from the left side of her brain, in an area near where the stroke hit. Eventually, when meds weren't controlling her seizures, one of our favorite doctors recommended we see one of his friends and former colleges who is an Epileptologist at Children's Hospital of Wisconsin, Dr. Kurt Hecox. I think we 1st saw him in October of 2012. He wanted Ava to be in patient at Childrens for a 48 hour EEG. It was at that 1st 48 hour EEG that things got real and we realized just what Ava and we were dealing with. Her brain was always trying to seize or it was actually seizing.

After working with Dr. Hecox for about a year, he and his team recommended we consider surgery to stop Ava's seizures. After many prayers, discussions and tests. Surgery happened on November 4, 2013. The surgery went smoothly, however, the recovery was very rough. Very, very rough. 48 hours after surgery, Ava was still bleeding. She needed emergency surgery to stop the bleeding (in her brain... this was soooo scary...). She lost so much blood that at 36 lbs she needed 4 units of blood and a unit of platlets. She had seizure flare-ups, infections and she developed migraines, horrible debilitating migraines. The team also learned that Ava had a blood clotting disorder. Months later, she was finally doing better except that her seizures were still there. Her neuro team continued to try to figure out how to proceed with surgery. It's a long story, but they figured it out. So on Nov, 3, 2014 Ava had her second brain surgery and thankfully, this time all went well and there was only minimal bleeding. It has now been a few months over a year and we are thrilled to say, Ava is seizure free. Ava's Epilepsy Journey has been life changing in many ways and we have learned so much. There are so many more details to her story, I just didn't want to include everything here, because with this blog, it's more about looking forward than looking back. But please, if you have questions about Epilepsy, please ask.

So, we are adopting AGAIN! We have learned of another little cutie who is living at the same Social Welfare Insitute (SWI) where Ava was in Hengyang, China. Her name is Yang Xia Dan and they call her "Dani". We are thinking of naming her Emma. She turned 2 in October and she also has Achondroplasia Dwarfism. We are at the very beginning of this adoption process. We are just working on writing out Letter of Intent (LOI).

We learned about Dani this past August when we took a trip to St. Louis to attend an International China Concern US Reunion. International China Concern (ICC) is a Christian Organization created by a wonderful man, David Gotts. Their mission is to partner with the Chinese government to help rescue orphans, provide food, housing and love, offer education, medical care and train China's caregivers. Ava was absolutely blessed to be helped by her Caregivers who were supported by ICC. So, in August about 18 families who have adopted children from 3 different SWIs who have been supported by ICC and a handful of ICC caregivers were reunited for a weekend. It was truly a magical and lovely time. While visiting and getting reacquainted, Brian and I happened to mention to one of our sweet friends that we were thinking about adopting again. Ava has been asking for a little brother or sister for a while and we realized, it would be good for her to have a sibling closer in age to her. Her older brother and sister are now 22 and 20. Our friend said "funny you should mention that... We have a little girl at the center with dwarfism!" And that's how this adventure began.