Wednesday, May 12, 2010

Amazing Luke--- Home at 3 yrs - Now 8 yrs old

















This is the write up we saw first about our son in Ukraine. He had many things he was struggling with... and all were major issues just by themselves... then when you put them all together his story becomes even more amazing...
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To this little guy, her majesty Fate has been more than unkind. He has been born with more health issues and abnormalities than even well-off families are able to handle: the list (below) goes on and on.The first thing everybody sees is a cleft palate. While adults can control themselves, the kids around do not hold back their disgust. The caretakers try to 'compensate' in love and attention, but they still cannot do as much as a standard surgery would do.And who would think about 'cosmetic' surgery when there are more urgent health problems to consider: there is also an arthrogryposis of the right leg with the stomach, spinal hernia, and most importantly, the congenital heart defect coupled with atrioventricular septal defect.Sounds scary? You bet. But even scarier is the thought that most of these defects are correctable, yet there isn't enough money for even half the needed surgeries. With the communal effort, orphanage director and his staff were able to raise some money from their personal savings for the much-needed hip displacement correction. The next one on the list is the vascular surgery that would cost at least $700. Nobody is even asking what other surgeries might cost.Before you close this page, please think a second longer about this child - he is not just a textbook case. His name is Alex. He is just as smart as other kids around him. He loves to play with other children (the ones who are kind enough to be his playmates). He can listen for hours to caretakers singing or telling fairytales, and tries to talk back, which is very difficult and even painful for him. In heart and soul, he is a child like any other. He only needs some medical help to look and feel like his peers.From his father's refusal letter, we know what a hard decision it must have been for the family. It is hard to pass judgment on his parents who had no resources or strength to take care of their son. With no ultrasound available to the mother during pregnancy, she had no knowledge, and no choice. And after giving birth, she could do nothing more than to give the baby up to the orphanage, hoping for a miracle. Together, we can make a miracle in Alex's life.09/03/03 Update: $1,050 collected, big thanks to Amey, Suzanne, Nicholas and Julie. We have notified the orphanage authorities that the money are raised and they are currently scheduling Alex's surgery.12/20/03 Update: The doctors have decided it is safe to separate Alex's leg from his stomach even with his poor heart. This would give him an early start in rehabilitation and learning to walk. Thanks to money raised, this surgery was successfully performed in November and Alex is recovering now. However, neither spinal hernia nor cleft palate can be operated on with the heart defect Alex has. The heart surgery can be performed once the orphanage can come up with $700 for oxigenizer, an apparatus that would circulate blood during the surgery.01/09/04 Update: Tina and Randy pledged $200 towards Alex's surgery and planned to take it with them when they travel to Ukraine to adopt their own child. Due to unforeseen delays and expenditures on their adoption trip, Tina and Randy will send their donation a few weeks later once they are back home in U.S.01/30/04 Update: Another family visiting Ukraine brought $200 for Alex's surgery, donated by Sandy and Bob. At the moment, Alex is in rehabilitation after the first leg separation surgery and is wearing a specialized belt. His cardiologists are happy with how his heart handled the first surgery.02/09/04 Update: Mary has wired the remaining $300 towards oxigenizer to the coordinator in Ukraine. Once Tina and Randy send in their pledged donation, baby Alex will be preparing for the heart surgery.
04/10/04 Update: Baby Alex is recovering from the leg separation surgery, but we have received a bad news from the Odessa cardiologists. They feel they do not have enough expertise to perform a heart surgery for baby Alex, and therefore it is postponed indefinitely.
09/30/04 Update: An incredible West Virginia family with twelve children adopts baby Alex and an 11-year old girl from a neighboring internat. Baby Alex is now affectionately known as Baby Luke and gets to know his new big family.
11/15/04 Update: Baby Luke undergoes an extremely successful heart surgery at John Hopkins Hospital and spends a week in the recovery. The hole in his heart was larger than originally thought, and it was repaired with a plastic "patch." The damaged aortic valve has also been repaired, and doctors were happy to report that only one surgery was needed instead of two.
11/25/04 Update: Baby Luke fully recovers and is enjoying his Thanksgiving meal together with his Momma Jeane, Daddy Paul and loving brothers and sisters. Now his life is completely out of danger, but his road to recovery is just beginning. In the spring of 2005, Luke will have a cosmetic surgery to repair his cleft lip and palate. Next, Luke would need to have his club foot on the right leg corrected and then the doctors will see what can be done about his walking. Although it is a long, difficult road ahead, Luke's parents are prepared to do whatever it takes to help him find his place in life, whether or not he is eventually able to walk.
04/15/05 Update: Baby Luke's cleft correction surgery is scheduled for May 12, after which he would spend three weeks in recovery. Let's hope everything goes well for Luke.
05/16/05 Update: Luke's surgery has gine extremely well, and he was home the next day. In three weeks, the bandages will be off and we would be allowed to see his darling face.
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The Lord called Paul and I to adopt this precious child - We began the process in Feb. 2004 and brought him home ( with Nataly) in Oct. 2004. He needed open heart surgery right away to save his life and has since had 13 major surgeries in the 5 and a half yrs he has been home with us... starting with his open heart surgery, 5 surgeries ( including more surgeries done in the same surgery like tubes being put in his ears when he had his rhinoplasty - first nose job) for his cleft lip/palate issues. He was born with no palate and when our surgeon performed that surgery he commented that," Luke's was the most difficult closure he had done in his 25 yrs as a surgeon. " Luke still needs many more cleft lip/palate surgeries . Honestly he is the best patient . All the medical personel just love him... His smile is infectious and his personality is as bright as ever. He also is a very intelligent child. He is doing 3d grade work.... and his answer to our question of what do you want to be when you grow up? is ,"I want to be a doctor." I am sure he will be one too.
He had his first leg surgery on his R leg in June 2006. It was a 17 hr. surgery and he was put in an external fixator for straightening and lengthening of the R leg ( 4 previous ortho. surgeons including 2 at Shriners in Philadelphia, 1 at Children's Hospital in Wash. DC and 1 at Kennedy Krieger affiliated with Johns Hopkins all recommended an amputation... but Dr. Standard- at the Rubin Institute for Leg Lengthening at Sinai Hospital has been a miracle worker, and a true family friend. He was able to get his leg straight and offer him the chance to walk and run.
Here are 2 links to a newspaper that covered his surgeries with Dr. Standard http://www.examiner.com/a-158979~Doctor_gives_child_hope_of_walking.html
Luke had the other leg done in Dec. of 2006 and his severe clubfoot was also repaired while in the fixator... They are difficult to manage but an external fixator has been a godsend to 2 of our kids... Luke and Mya.

He had his R leg removed from his back in Ukraine- It had been folded up like an accordian to the middle of his back. So when he came home at age 3 it was bent like a z. The removal left him with a myloceal on his spine... this was repaired in 2008.
He is being followed by our cardiologist at Hopkins every 6 months and will eventually need another open heart surgery to replace his aortic valve... He has a moderate amount of leakage that for now is being controlled with medicines... just buying us more time.
I will post more pictures of Luke ... I have to find them on our older computer but he is amazing and the Lord has blessed us thru this precious child... with much laughter, joy,playfulness and sweetness even when he is an 8 yr old with an attitude :)


2 comments:

Christie M said...

All I can say Jeane is AMAZING!!!!!

Tracey S. said...

I must agree whole heartedly about the external fixators, they are no fun at all but they work wonders. Everytime I see a full leg fixator like Luke had in my doctors clinic day I just gaze in amazement. 21 months later my external fixator is coming off on Monday!!!! My doc works at Shriners Philly & kids like Luke are receiving better care because he is there. I have a fellow friend (also w/ multiple ptygerium syndrome) who is coming out of his 2nd knee fixator on Tuesday. He is 10. I showed his Mom Luke's story!