Surgeries Still Needed:

Thanks so much for reading about the surgeries we're hoping to get done in 2009. There are a few I need to add, some I need to update, and a couple completed or sponsored surgeries need to be acknowledged. Please stop by again tomorrow for an updated list! Workin' on it!

The seven surgeries we were able to get done for our children in 2008 have made so much difference for them. Their lives are precious, so I seek out the best medical and surgical care for our children that can be found in the state.

Below I've listed the surgeries that have yet to be done. One of my short-term goals is to get the children caught up surgically as much as possible before the end of the 2009, so that I can focus more on other things like education (so much more we can do in that area, so many suggestions from professionals that we have yet to implement), enrichment (field trips, playgrounds, and just fun), and all the non-surgical treatments and therapies available (such as occupational therapy, hyperbaric oxygen therapy, water therapy, art & music therapy, etc.).

Please keep your heart open as you read, and if you are able, would you or your group help sponsor a surgery?*

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Faith has one damaged eardrum that needs to be grafted so that water will not continue to get into her inner ear and cause infections. We were able to get the procedure done for Hope at the cost of less than $1200 for both ears, so Faith's should cost around US $600.

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We're taking Prakash (who has Apert syndrome) to Hyderabad today. The first attempt at getting him a midface distraction surgery (to bring his upper jaw forward and downward so that the teeth meet) had to be abandoned after the first cut because Prakash was bleeding excessively. After testing, they found out he had a vitamin K deficiency, which they treated with three injections. They retested him and cleared him for surgery on the 12th or 13th of January. This surgery itself is already sponsored by a charity organization, but a sharing room (rather than the 30+ bed general ward) costs around $300 for the 10-day stay and food has to be brought in from outside. Following his discharge, Prakash will have to stay in Hyderabad for at least a month and wear a device to slowly bring his jaw forward. He and his house sister and another lady will care for him in a rented room at an inexpensive (but clean and safe) guesthouse at the reduced rate of $375 for the month. So, with food, hospital room rent, guestroom rent, and daily travel to have the device's screws turned, I'm estimating the total cost to be around US $900. Update Feb 25, 2009: After Prakash's second failed surgery attempt (in January), I decided to try a multispecialty hospital where the surgery could be done in partnership with a hematologist, and where there would be backup support in the event of a bleeding emergency. I spoke with a maxillofacial surgion at one of the largest hospitals about doing Prakash's surgery there, and they said to bring him in for an evaluation and that they would do a scan of the veins & arteries in Prakash's mouth and would let me know. Doing it there would be more expensive, but safer, and right now is our only option short of flying to a Western country. Will keep you updated.

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Here's a photo of Prakash with my daughter Shayna in December. Prakash's face was swollen from the first abandoned facial surgery attempt. You can see one of Prakash's hands in this photo. Prakash's fingers were separated to the first knuckle in an early-childhood surgery, but it's not enough to be able to use them individually. He needs help to dress and do many other simple self-care tasks. Prakash needs one more finger separation surgery to fully free his fingers. It will involve skin grafting. I plan to have this done for him toward the end of 2009. I have yet to get an estimate for this surgery, but I imagine it can be done for under $1000 for both hands--small price to pay for the lifelong use of one's fingers!

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Victoria has only one eye, and that tiny eye has a large cyst inside it which restricts her area of vision to a small crescent. There's not much that surgeons can do about removing the cyst (so pray for a miracle), but there is a laser procedure that will seal off the cyst and help prevent it from growing and limiting her little bit of vision further.

While they're doing that, they will also put an eyeball-shaped plastic ball in the empty eye socket. They'll replace this over the years with bigger ones as she grows. This will prevent the socket from puckering more, because the socket won't grow without an eyeball in it. Then, when Victoria's older, she will have the option to decide whether she wants a glass eye just for the sake of appearance. She's gorgeous without it, but I do want to give her the option. The whole procedure (laser treatment and eye socket expander) should cost around $175. This surgery has been sponsored!

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The eye procedures are minor, and Victoria should recover the same day. In addition to the eye differences and the club foot (which is now repaired), Victoria has other little cute, quirky differences that make her unique. One of these is a deformity that affects some of her fingers. They're bowed sideways--can you see it in the picture? Her index fingers are affected, and at least one other finger on each hand.

The plastic surgeon/hand specialist who operated on Rebekah's face said that all of Victoria's bowed fingers can be corrected in one surgery with bone splices. The fingers should then grow straight.

Victoria will be able to attend mainstream school, and the easier we can make it for her to be accepted in that environment, the better. Straight fingers will help her hold a pencil better and do other fine-motor tasks with less difficulty. My best estimate for the finger correction surgery is $650.

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Do you know who these chubby little hands belong to? Yep, our own Rebekah (whose picture is at the top of the post)! Hey, by the way, did you know she's walking now with help? I'm so proud of that little squishy, squawky, tubby, feisty, comical little chubbits of a toddler girl. Anyway, these adorable little mitten hands, alas, can't stay that way forever. Rebekah's getting finger separation surgery (or syndactyly release) as soon as we can get some pesky warts cleared up on her back (trying potato, eggplant, duct tape, etc. since the "only medication for warts" painstakingly tracked down hasn't worked). Rebekah, like Prakash, was born with Apert syndrome (http://www.apert.org/). Both hands should be doable for under $1500 (more than for Prakash, because his have already been partially released. The procedure will involve skin grafting, and the surgeon thinks he can release all eight fingers at one time.

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Rebekah may also need strabismus surgery (for 'lazy eye'), which costs about $400. She will also need a midface distraction, but not for another 3 or 4 years.

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Yemima, Thomas and Noah all have CP, and each one has a dislocated hip. One leg has come out of the hip socket, making one leg appear shorter than the other and causing pain. This is not unusual for cerebral palsy, but it does need to be surgically repaired, because in some cases it is very painful and interferes with therapy and with the children's progress. The hip surgeries should be doable for approximately $500/child.

















An ortho surgeon examines Thomas. Yemima's to his right.

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Noah also needs a cataract surgery and scoliosis (crooked spine repair) surgery. Will get you cost details as soon as possible.

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Amulya! Amulya is such a fun-loving, compassionate, and EXCITABLE teenage girl. She can't contain herself when she gets excited--she actually falls down and shouts--in restaurants, dentists' office, and dozens of times at home. She hovers over her twin sister Dhivena, who had two foot correction surgeries this fall, and she checks on Josh often to see that he's being properly pampered and loved. She's one of the few who can get a wholehearted laugh out of that boy. Amulya and Dhivena both have cerebral palsy, and both have foot deformities. Dhivena's were worse--she could walk only with two helpers and with great difficulty. But Amulya can get around awkwardly on tiptoe and the outside front edges of her feet. She needs both feet corrected (bilateral triple arthrodesis). Total cost for this procedure is around $700 (for both feet). Pretty wonderful gift to be able to give someone, isn't it?

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Hannah has complained about throat pain all year, and has been treated a few times for tonsillitis. She talks as though she has something in her mouth, and her tonsils are constantly swollen. She needs a tonsilectomy and adenoidectomy. It should be doable for around $400. I would like to do the surgery soon, since she just finished major exams and is starting a new term.

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There! Now I've given you a wonderful way to jump right in and help these kiddos in a very practical, life-changing way! Some of them have waited a long time for these surgeries. Help me make it happen for them in 2009!! Click on the "donate" button to give via paypal or the "Frequently Asked Questions" button to learn more about ways to help. And those of you who pray, please print out this post and keep it close. Believe for miracles, because God has promised them!


Note: Since I'm not a medical professional, there may be some flaws in my understanding or explanation of the children's conditions or the procedures they need.
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Most of the surgery estimates are made based on my experience and research. With the exception of Prakash's jaw surgery, all estimates are of the cost of the procedure and hospital stay only (not for the trip to Hyderabad, lodging, food, etc.). Sometimes we are able to get discounts on the procedures, but other times the cost rises because of unforseen delays or post-op complications. Any money saved (by obtaining discounts) will be used for unsponsored surgeries.