Latest Cardiology Visit!!!

Jiliang went to the Cardiologist on June 30th and wowed the doctors. She is doing so well! From December 2011 to June (just over 6 months), she grew FOUR inches, and gained 4 pounds. I couldn't barely believe it, but it did explain why the dresses and clothes I bought at Easter were short. I was ready to blame it on a dryer mishap.
The best news, however, is that Dr. Cotts wanted to wean her off of her heart medicine! After consulting with the cardiologist who specializes in Pulmonary Hypertension, they both agreed to slowly decrease the medication over the summer. By the end of summer, Jili will be medicine-free. Of course, she will go back in September for further tests, and subsequently she will be monitored closely to assure that she can safely remain that way. Currently, the pressures entering her lungs appear to be on the high end of normal. She is doing better than we all expected, and Dr. Cotts said that is near the best-case scenario - with the best-case scenario being free of her heart medicine.
This is such an immense blessing to us, and a Miracle really. Last March, when we brought Jili home, we expected her to have a repair for Tetralogy of Fallot. When we got her home, she was diagnosed with Truncus Arteriosis. It is uncommon to find an older child with Truncus, as most Truncus is repaired within the first week of life. The life expectancy of an unrepaired Truncus baby over age 1 is 20%. In layman's terms, unrepaired Truncus causes damage to the lung vasculature that leads to pulmonary hypertension. Last April of 2010, we were faced with grave news that Jili might have a shortened life span, possibly not making it to adulthood, or even to her teens. At first, surgery did not seem to be a viable option, as her heart reconstructed, may possibly reject the surgery. Her heart could have continued to function the way it had her entire life and sent high pressures into her lungs.
However, after much testing and deliberation at Mott's Hospital, her doctor called to tell me that the surgical team decided that Jiliang's best option for life was surgery. On April 15th, 2010, I received the call that she was able to have surgery; surgery was scheduled on April 16th, and her surgery was done on April 20th by Dr. Ohye. It all seems to be a blur now, but looking back I realize all of the "coincidences" that occurred to make that surgery happen. I was supposed to go back to work on April 26th. Dr. Ohye, a wonderful surgeon, that built a rapport with me before Jili's homecoming, had one surgical opening on April 20th. Then, she got out of the hospital with only a few days to spare before my FMLA time was exhausted. The rest is history.
Link to the April 15th post:
http://thekoeppefamily.blogspot.com/2010/04/open-heart-surgery-this-tuesday.html
The surgical risks were at least 20% chance of mortality, and 80% in our favor. That was terrifying. In our hearts, we knew that we had to try to give our new daughter a chance at life. We also knew she had beaten the odds before in China. After 24 days at Mott's Children's Hospital, Jili came home. She was on two heart medications, and one was experimental - specifically for pulmonary hypertention - and had specific directions for administering it. In November of 2010, we went down to one heart medication, with the idea that she could be on it for years and maybe even for life. Today, we are simply greatful.
We thank the Cardiology team at Mott's Children's Hospital for this precious gift. Please keep our little girl in your prayers. We pray that she will continue to thrive in a long, healthy life, and that as we slowly wean her off of the medicine this summer, her body will adjust so that she can be completely medicine-free.
Thank you for all of your prayers and support over this last year.
P.S. Pauline, we hope to see you soon. Please tell everyone in the PCTU unit that we appreciate all that they do!
Sincerely,
Jill

Annual Detroit FD ~ Engine 21 Picnic

What a great weekend! The kids had an awesome time at the Kay residence last Saturday, in honor of the Annual Detroit FD - Engine 21 Picnic. Kay parties are always favorite events. This year in particular, there were a lot of children in attendance, including my kids. It was very heartwarming to capture all of the Dads and their kids playing Waterball together - the day before Father's Day.

In the video, T.J. is playing Waterball with his Godfather, Nate Darling (AKA: Uncle "Nutz"), who came up from Indianapolis FD. My husband Scott (AKA: Goose) is manning the airhorn in the pick-up truck (blue striped shirt). In attendance were firefighters from Detroit, Indi, Ann Arbor, Ypsi, Pittsfield Twp., Superior Twp. and Saline fire departments, to name a few.

This was my first video slideshow with special effects and music. Now that I have learned the ropes, I am planning Jili's Adoption video. Enjoy the video.
Jill :)

Happy Father's Day!!!!

Happy Father's Day to Dad, Papa Harvey, Papa Koeppe, Uncle (Godfather) Sean, and Uncle (Godfather) Nutz!!!!
Love,
Jili and T.J

Our Dad, AKA: "Goose", at a Training Burn


Dad and Jili first meet at Detroit Metro Airport


Airport Greeting


First family Photo


Jili and Dad at the Pool


Daddy-T.J. catnap


Santa "Harv"


Papa and Grandma Harvey


Papa Koeppe


Uncle Nutz's Wedding 2007


DFD Picnic 2010 ~ Team Uncle Nutz and T.J.K.


Uncle Sean and Jili


Jili and her Godparents, Sean and Lori


Grandpa Harv and Uncle Nutz


Papa H. and the kids


The Koeppes and Gleasons


HAPPY FATHER'S DAY TO ALL THE DADS OUT THERE!!

Party Today!

We are off to the BRB (Big Red Barn) for the Annual Detroit Fire Engine 21 Reunion! Waterball, food, fun, goats, tractors and a hillybilly hayride - great family fun. Post pictures later. Let's hope it's a sunny day!
Jill :)

She's Not Innocent Here

She's not hiding behind her big brother, she's using him as a human shield to water-soak "innocent" (not sure this word implies here) firefighters.
~Memorial Day 2011 at the BRB

Jili's Kindergarten Registration

In May, we registered Jili for Kindergarten. I was so nervous when I signed Jili up for Kindergarten Registration. A part of me was worried that I would not be able to advocate the importance of her special circumstances: the skull issue, the wig factor, the heart medication, her adoption situation and trust issues, and let alone being an English Language learner. On the other hand, I was wracked with worry that "I" was going to worry the schools, and that they would overact and flag her, and limit her. Jili is very smart and wonderful to be around, and I just wanted to be fair to her.
I knew that Jili was probably a good candidate for Developmental Kindergarten or Young 5's, due to her age alone. Being a teacher myself, I knew that she would also benefit from a young kindergarten program due to: the adoption transition, the language aquisition from learning the English language; and from coming from an orphanage in general. In spite of these barriers, she is very academically smart, very observant and follows directions well.
Our Young Five's Program is in a different school. I was trying to figure out how my parents (who watch my children while I'm at work) would pick up Jili and T.J. at the same time, from two different schools. I was also worried about putting her on a bus, and being in an unfamiliar environment, without her big brother T.J.
I can thank my son T.J.'s teacher, Mrs. Chestney for rectifying the situation. Mrs. Chestney has been with us throughout the process of getting Jili home, and throughout her heart surgery. She is aware of her skull issue and her heart issue, and Jili knows and trusts Mrs. Chestney - not to mention, she is a great teacher.
Mrs. Chestney was at Jili's Kindergarten assessment on June 6th. Jili went with her willingly, and Mrs. Chestney stayed with her at the first station until Jili was comfortable testing with the other adults. We were afraid that Jili would clam up around strangers, as she had done in the past, but she did great. Mrs. Chestney also made arrangements for Jili to go to kindergarten this year in her classroom, in the same school as her brother T.J. We are prepared that Jili may be in her room again next year, but we are going to cross that bridge next year, and let Jili determine her own path.
We are so excited and feel so blessed to have that weight of worry off of our shoulders! Thanks Mrs. Chestney!

Humane Society Birthday Donations ~ Thanks!!

For T.J.'s Birthday, we asked for donations to the Lenawee County Humane Society, in lieu of birthday gifts. T.J. collected $120 in Birthday donations. The kids were so excited to take all of the money to the Humane Society. Our Humane Society is a no-kill shelter and it is in danger of closing, so it felt nice to help out in some small way.
There was a cute black kitten there named Boo, that I wanted so badly to take home with us. Jili is trying to understand why the "puppies and kitties" don't have homes, and why the little kitty named "Boo" was left in a picnic basket with his sibling, "Yogi". Hopefully, someday she will have the fortitude to understand why she was abandoned in China, and use that compassion to help other orphans, human or furry.
Thanks to everyone who donated to the Lenawee County Humane Society. Every little bit counts, and it gave my children a wonderful lesson on giving and making a difference in their community!
Sincerely,
Jill :)