"Facing the Giants"
Good Morning,
We went to see the fabulous movie, "Facing the Giants" on Saturday night with all our girls. It is a wonderful movie with many opportunities to share/apply your faith. One point in the movie was a parable in the bible of how there were two farmers that prayed for rain during a drought but only one farmer received rain. Who do you think was blessed by the Lord. (The one who prepared his field)
It has been quite a while since we have updated all of you and we have continued to follow Shelby's progress. Her back has done GREAT and we have moved onto finding out about doing 'soft-tissue releases' on her legs. We traveled to San Diego a few weeks ago to see Hank Chambers and received so valuable information. He also has trained a doctor in Corpus (can you even believe that, my hometown) He said that we should have gone all the way to her pelvis with the rods because her two last vertebrae will fail in the future. She may be 30 years old but they would fail. Boy, you can just see my response to that!! We decided not to go to her pelvis because we wanted to preserve her ability to rotate at her hips and be able to reach things. Also, we discussed several options with her legs and this would mean many surgeries with possibly a small benefit. If we just did the 'soft-tissue' and not the bone surgery, we would gain some time and range in her legs. This would mean releasing her hip-flexors, adductors, and hamstrings. We would follow with serial casting which would mean wearing casts on her legs for a week at a time to stretch the muscles for about 6 weeks. They would also use BoTox in the muscle belly in the operating room to help with the range and reduce the amount of muscle spasms over time. We also have received information from Dr. Leiland Albright about managing her tone. This would mean implanting a Baclofen pump in her abdomen. Dr. Albright is the doctor that is on the forfront in this areana and he referred us to a doctor in Dallas for more information. If we still had questions about it, Dr.Albright would be glad to see us. We have not considered doing the Baclofen pump because Shelby is still so tiny and weighs only 70 pounds, and the pump is about the size of a hockey puck. Also, we are not sure that this would not increase her incidence of seizures. (Only a few things to consider, ha) Also, the battery in the pump has to be replaced about every 5 years, and the FDA only allows a complete replacement including the catheter in her spine. The pump would need to be refilled about every 3 weeks and that would be done in Houston. The greatest benefit of the pump is that it is temporary. If if doesn't work, you can remove the hardware but the increased muscle tone would return. Our biggest concern about her increased muscle tone is that we must preserve the health of her hips, and all those muscles pull on the femurs which go into the hip sockets. We do not want to risk the possibility that she will dislocate her hips.
We will keep you posted and hope and pray that you will continue to keep Shelby and us in your prayers. We pray that we will make the right decisions and that Shelby will only benefit from those decisions. Also, Mike and I have 3 very close friends that are dealing with the trials of Breast Cancer at this time, Brenda, Deirdre, and Jonesa. October is Breast Cancer Awareness Month and PLEASE keep P.U.S.H. ing. (Pray Until Something Happens)
All our Love,
Kim and Crew
P.S. I am adding an update to this morning's post. I did not make it clear about Shelby's rods. No, they can not go in at this time. They would only go in and stabilize the last two vertebrae once they start causing problems. We are scheduled to see Dr. Dale Swift in Dallas at Children's on November 6. This will be a consult about the Baclofen pump. We are still working on an appointment in Corpus Christi to see Dr. Chris Comstock to do the muscle releases. It takes of whole group of professionals to make this plan work! Thank heavens for their talents and knowledge. Also, Taylor and Kendall are doing great and High School is fabulous. (After some wrangling with Shelby) Kendall is in the 4th grade and taller than her teacher. Her team this year is super and she is having a blast. I forgot to mention that while we were in San Diego, Shelby got to go to Sea World. She had an awesome day. Mike took us to the Hotel Del Coronado for Brunch and we enjoyed the Pacific before our return flight home. Our pilot on the return flight ended up being from Montgomery and his son is in a few of Taylor's classes. He really surprised Shelby at school a few days later when we all put it together. It is really a small world and your light must shine for all to see.
Have a Blessed Day!!
posted by Kim Newhouse @ 9:30 AM
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