Sunday, April 12, 2009

More Info!

Happy Easter! Jesus makes all the difference in our lives. What a wonderful time of celebration we had a Crosswinds last night and at MBC this morning. He is risen!

I've been swamped with questions, so because it's Easter, I'm copying an e-mail I sent recently. It'll give you some background and maybe answer some initial questions. I should have more to add tomorrow! Thanks for all your prayers and support already!!

Sumana saw her regular orthopedic dr (Dr. Rubery) on Wed. in Rochester. He also brought in a new dr that has recently come on staff. (Dr. Sanders is from Shriners Erie). They reviewed her latest x-rays and history. As most of you know, Sumana was born with spina bifida. She also came into the world with some malformed and extra ribs. Because of this, she also has scoliosis. We have had drs. in Philly and Roch. following her scoliosis since she arrived almost 5 years ago.

Over the last 3 years she has had pneumonia several times each year. It has recently been determined that this is probably due to the spine encroaching on her lung space. Pulmonary specialists confirmed that she does have Restrictive Lung Disease.

With that said, Drs. Rubery and Sanders recommend that Sumana have surgery to implant the VEPTR device. It's like 2 vertical ribs. It is made of titanium alloy (oooo!) and is attached to existing ribs and the spine. It is expandable and will be adjusted 2-3 times a year as she grows. The VEPTR will expand her lung capacity and straighten her curve as she grows. The hope is that when she's done growing she won't need the traditional spinal fusions.

The 'God-thing' in all of this is that Dr. Sanders just arrived in the past year and he does the VEPTR surgery. No one else in Rochester does. And he trained with the inventor of the instrument.

We're hoping to get a surgery date on Monday. Because of Sumana's condition, another surgeon needs to be in on the surgery. Please pray that they can come up with a date that BOTH of them are available that is SOON! I really would like to get this underway so we can all have a chance to enjoy the summer months.

The surgery will take 4 hours and she'll be hospitalize 5 days. The recovery time is a full 6 weeks. I am fearful of the pain involved for Sumana. She has been so blessed with relatively good health and a pain-free life thus far. From what I've read, the adjustment to the device is very difficult. Once that hurdle is cleared the kids seem to do extremely well.

Thank you for your prayers. I'll keep you posted!

Addition on 4/12/09: Someone reminded me of II Timothy 1:7: God doesn't give us the spirit of fear. So, if God doesn't give it, who does?? . . . . . And why would we want to take any gifts from him??? Hmmmm, something to think about!!


  1. It is so hard not to have fear as a mommy. God gave you that "mommy's heart" too! Throughout our journey I just keep putting one foot in front of the other. If it has to be done, we do it, but along the way find out as much as possible about what is going to happen. For me with information, comes some sort of peace. You are a great mom and I have no doubt that Sumana will sail through this! I'm sure you'll be praying a lot of prayers like I have "God I'm a mess, I'm scared, I'm me sort it all out!"
    all the best,

  2. You are in my thoughts and prayers, fellow Heartfelt stamper. Dr Rubery performed two very difficult and risky surgeries on my husband over the last few years. He is an amazing and gifted surgeon. He was the only surgeon in the Rochester area that would operate and made my husband's last years alive much less painful. Blessings to you and your family.

  3. Thanks for the encouragement, ladies! It's reassuring to have great doctors and a greater God who's in control.