Thursday, September 24, 2009

We have had a few b-days this month










































































































Luke turned 8 today... Who would have ever guessed he would even be alive... walking, running, and doing school so well. We celebrated today by visiting his orthopedic doctor... Dr. Standard for a check up. Really Dr. Standard is such a wonderful person and it was a joy to have to see him today on Luke's birthday. Luke's leg is doing well and we talked about his next surgery and Mya's upcoming leg surgery. When we first got in the room Dr. Standard and his staff came in with a cake for Luke, cupcakes for all of us and a bag of presents for Luke. They all sang happy birthday to Luke and really made our visit special... as usual.
I want to share Luke's story to encourage some of you. He has such an awesome one of overcoming so many medical anomolies... first he was born with a hole in his heart and his aortic valve was proplased thru it, He was born with a bilateral cleft lip and basically no palate, he was born with his l leg webbed and a severe clubfoot, and his r leg was born fully attached to his back like an accordian. They did one surgery in Ukraine to release his r leg but it was still bent like a z when we adopted him.
We met him thru our agency that at the time was functioning as an independent adoption group. They were trying to raise money for his lifesaving heart surgery and we asked if we could adopt him....When we first met him he was very spoiled rotten... because of all the medical needs they let him have or do whatever he wanted. It took a very short time to help him overcome his demanding ways.... We saw that he disliked loud noises when I took him to the bathroom on the airplane and he was screaming. When I flushed the tolite he immediately stopped screaming and settled right down... when we got home and he started into that screaming mode he was placed on a stool and I beat a pot by him telling him in Russian, " You be quiet and momma will be quiet." We had tried everything to get him to stop this behavior and this was the only thing that worked..... it only took about a week and he was a diff. boy... his behavior changed that quick and that dramatic with the "beating pot" technique. He was home only a few weeks and had his open heart surgery... he did well and instead of a valve replacement they were able to do just a repair... although now he has reached a level with the amount of leakage in the valve that he will need to do a replacement open heart surgery in the future... for now the medicine is holding him at an acceptable level....
He has had several cleft lip and palate surgeries to get him to where he is at now... He also has had one rhinoplasty( work on his nose). He still needs many more.. the next thing according to our cleft clinic visit this week is a possible pharyngeal flap... to help close off his palate for better speech. We are doing a test first and then that will be scheduled by the end of the year.... he will also have his 4th set of tubes placed in his ears at that time.
His first leg surgery here was done by Dr. Standard... after 17 hrs of surgery to straighten and place his r leg in an external fixator and another 14 hr surgery on his l leg and many pin site infections ( including a mersa one that he was hospitalized for) and lots of physcial therapy he walked.... only 2 weeks post op in a brace and walker... a whole year earlier than anyone expected. We had gone to 5 other pediatric ortho. doctors and the first 4 suggested to amputate his r leg and Paul and I did not feel that was the right thing to do and so we kept going to one more doctor... we were so glad we did that.
He had a spinal myloceal ( like a hernia ) that was left from where his r leg was attached to his back. That was done in April 2008 with no problems. Fortunately his spine was not too involved except for some leakage of fluid into a knob like protuberance that was removed with the repair. He also had his rhinoplasty the following Oct...
He is the absoulute best patient... even when he was younger I did not even have to hold his arm when they started IV's or draw blood... all the medical proffessionals love him .... as you can see how Dr. Standard and his staff was today. The physical therapy that I did during the time he was in the external fixators and post off was very hard on him... he was on pain meds and calming meds for almost a year.. and often threw up during the therapy times daily... he did what he had to do and now he walks and runs and is like most other boys...
He has given us so much... we love his sweet personality, and precious smile... his easy going way and his willingness to do anything. He is gentle and kind hearted and has a wonderful imagination . The other day I heard him ask Mya," Have you ever seen a cow jump over the moon?" I just smiled.... pure joy every day with him in our lives.

3 comments:

Mike and Gail said...

Beautiful. Happy Birthday! Your story makes my heart smile. :D Thanks for sharing.

soontobemomof9 said...

Wow, I always wondered the about the stories of your kids! Luke has a wonderful smile!!!! What a great little boy!

MamaPoRuski said...

How amazing! Thank you for sharing your beautiful miracle!