Wednesday, August 10, 2011

An Alex Update

Today was the day that Alex saw the Spina Bifida clinic team. Three hours and five doctors later I found out that Alex now weighs 36 1/2 pounds and is 41 inches tall, and that most of the diagnostic tests that he had last year need to be repeated. Not exactly what I was hoping to hear.

The Urologist ordered a Cystogram (VCUG) and Cystometrogram (CMG) to check on his kidneys and bladder. I got a previous letter last month stating that we did not need further testing since his ultrasound came back normal but I must have misunderstood. After these two tests are done she is happy to discuss surgical options for bladder and bowel incontinence which is a wonderful step in the right direction since nothing else has seemed to help. The Urologist had no problem increasing his catheter size-- more than I felt comfortable with so we agreed on the next size up instead of two sizes up. I was very happy to hear this since it was taking much longer to empty his bladder-- and he was leaking around the catheter. The previous Urologist was against increasing the size anytime soon-- go figure. The school requires a bunch of documentation from the physician ordering catheterization and medication and the Urologist was happy to fill out the forms. She even changed the procedure that is the district's normal protocol because it is a bit overboard making cathing seem more like surgery prep. In short, I was very appreciative of how accommodating she was.

Next came the Orthopedic Doctor. He wants to look into Alex's leg discrepancy and the status of his dislocated hip and mild Scoliosis. Alex will be having a few x-rays that will answer these questions. The doctor also mentioned a very quick surgery to release a tendon to help with Alex's scissoring of his legs which might also help with his hip dislocation. He made it sound very quick and easy-- but then I remembered a fellow blogger whose son had this same surgery and had to be in a spica cast for 6 weeks. I mentioned this to the doctor questioning the ease of such a surgery and his response was, "Well the surgery is easy for me. Ha ha. I didn't think about the after care." Gee thanks-- ha ha. But it is what it is and I do agree that this surgery, if Alex needs it, will be easier on all of us if he has it now rather than later.

The Neurologist also wants a new MRI to confirm whether Alex's spinal cord is tethered or split. Depending on the severity and whether it needs to be addressed right now we will decide together whether or not Alex will have surgery to correct it. He does not have any symptoms so at this point I would be inclined to hold off on this surgery.

The Physical Therapist and Pediatrician said Alex is doing quite well otherwise. Well I would hope so after hearing about all the tests he needs to have!

9 comments:

  1. What a lot to go through but it will be worth it if it gives you the answer and help you need.

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  2. Wow, that was a lot to take in for one day. Those days are overwhelming for sure. I am not sure if you were referring to Davin and remembering his spika cast, but if so, Davin did have a tendon released, but he also had major hip surgery at the same time and that was the reason he had the spika cast on. They had to break his thigh bone and take a piece out and then put in hardware. I just wanted you to know that, so you wouldn't worry more than you needed to:-)

    Christine, you are doing a great job with Alex and all of the different medical issues going on. I am sending a big hug to you! I know how overwhelming those long lists of tests are.

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  3. I have only commented once before, but I felt that I should comment now. I just wondered if you had considered chiropractic care to help Alex with the scoliosis. I realize that his isn't the most straight forward case, however, there are many stories of people whose curves have been minimized or even completely diminished through chiropractic care. I work in a chiropractic clinic and just recently we have had a wonderful success story for a young patient with scoliosis. Her scoliotic curve has basically disappeared after several months of treatment.

    I can't guarantee anything, but just thought it might be worth investigating further to see if it may be beneficial in Alex's case.

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  4. How far do you have to go to the doctors? I end up spending as much time on the road as I do at the doctor's offices sometimes!

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  5. Heather your words of encouragement mean so much. I know that you are a Mom who has been through much of what we are now going through so I always appreciate your words of wisdom.

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  6. Renee I think that Alex's scoliosis is very mild-- but I will keep your comment in the back of my mind. Thanks for the suggestion.

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  7. Sue, we are actually pretty close to all of the doctors-- about a 1/2 hour to every doctor we have seen so far. I am thankful for that.

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  8. Hi! Having children with special needs is a lot of work no doubt about it but a real joy, Keep up the wonderful job you are doing. Pat

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  9. Wow - what a huge day! Sounds like some good outcomes though! You're doing such a wonderful job Christine!
    Alex is very blessed to have such a dedicated mother!

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I find your comments so inspiring! Thanks for visiting our family blog, and sharing your thoughts.