Saint Paul, MN - Full Trisomy 13
 

HI HI!

Our move to Saint Paul, MN went good.

Eisha became a big sister December 9th 2008.

Since the move from Kansas to Minnesota Eisha been hospitalized twice for Pneumonia and others.

Eisha is very happy here. She plays more often, she laugh more often too. And most importantly she has friends to play with. As parents it fills our heart with joy seeing our baby girl Eisha happy and growing. We will everything in our lives to give Eisha the complete life she deserves. She is not our child but God's. So we will do everything in our power to raise his child even to our last breath. *smiles*

Below are some updated pictures of us. *smiles*

Here is our new e-mails: pajnhiaj@hotmail.com  (Mom-Pa Nyia) suav-panyia@hotmail.com  (Dad-Shoua)

Here is also our myspace pages if interested...
(WE UNDERSTAND THAT NOT MANY PEOPLE AGREE WITH THE WEBSITE MYSPACE BUT THIS IS OUR MAIN SOURCE IN KEEPING IN CONTACT WITH THE PEOPLE WE LOVE and UPDATES) Thanks for understanding!! *smiles*

http://www.myspace.com/pajnhiaj  (mom) http://www.myspace.com/chickenz_vang  (dad)

<3 <3 <3 TINY VANG FAMILY <3 <3 <3

2-2-07

We call ourselves the tiny Vang family. It's just our baby Eisha Vang, my husband Shoua Vang, and me Pa-Nyia Vang. Eisha is 17 months old. Born on August 26, 2005.

She was diagnosed with Trisomy 13 when I was 5 months pregnant. It was really hard being told she could die at any minute while in the womb. She was born at 41 weeks, naturally. Approximately 3-6 hours after birth she stopped breathing when I was holding her. She was bagged and given oxygen and she slowly came back, YAY!

She was born with a cleft lip and palate, extra digits on each hand and feet, both her pupils are extended, a nod on her lower bottom, and everything else that wasn't physical we didn't know. We were told it wasn't necessary to check for other things such as her heart, brain, and other organs since they knew she have a very high chance of not making it.

We were told she’d have a very high chance around 70-95% of being still born. And if she was born she wouldn't make it pass the night or a few days. If she did, she wouldn’t make it pass the month or a few months. And she did.... and we were told again she won't make it to see her first birthday. Well she did, and we are so HAPPY!!.. Her hospice nurses advised us to set up funeral arrangements the day we took her home, so that when she passes away we wouldn't have the burden of it, which we choose not too cause we didn't want to believe that she will pass away.

After her first birthday we decided that since she was still thriving, and has made it passed all of the negative things that everyone had been telling us, we should start doing something. She had a surgery date for her cleft lip and palate on Oct. 30th. But she developed pneumonia and has been in and out of the hospital for other things like; rsv, roto virus, shock, hydration, and sorts.. and we still are dealing with all this.... which delays the surgery.

We finally had her heart checked, her heart was a green light, everything was normal YAY!! We are going to go see an eye doctor this month, so we're waiting. Have a G-button placement for her feeding surgery on the 19th of this month. Her hearing not sure, have to wait till cleft lip and palate surgery cause she'll need ear tubes for the fluids in her ears. The doctors are talking about running another genetic testing on her again.

 She has glands around her neck, she’s seen dermatology, they don't know what it is and ran tests nor seen it on a infant before only on elders. Her developmental is around 3-6 months, can't sit nor walk, but that's ok! And that's pretty much about her. Thank you once again. *hugs*!!!!!!!

We're just so happy we can tell someone or have someone know what we are going through. *huggles*!!!!!!!!!!! *smiles*

-Vang Family
XIA VANG 
pajnhiaj@hotmail.com  (Mom-Pa Nyia) suav-panyia@hotmail.com  (Dad-Shoua)