Tuesday, June 29, 2010

MRI results

Just a quick update to let everyone know the MRI results looked good. We're very relieved about that! We'll keep you updated on where we're going from here....

Sunday, June 20, 2010

Update!

We went to see Dr. Kogan last Thursday. Jack was so excited to see her and show her the progress he has made in the last 6 months. Dr. Kogan was thrilled to see how far he has come and was intrigued about the new therapy he has been doing. He had xrays of his leg and everything looked perfect. The only signs that a lengthening had ever been done was little spots where a few pins were!

Because Jack has congenital scoliosis, we had to do routine spinal xrays. He has been complaining about back pain the last couple of months, so we were curious to see what the xrays would give us any answers. The first round of xrays Jack was standing on a block (to level the hips). The xrays did not look good, his curves had progressed since his last scoli xrays in October. We were very disheartened to see this and could tell Dr. Kogan was disapointed as well. She suggested that we get an MRI to check for tethered cord and to consult with a spinal specialist. Jon asked if we could repeat the xrays with Jack laying down. His last round of films were done laying down, so to compare these new xrays with those was difficult. So, we repeated with Jack laying down and those films looked better. That was a little bit of a relief, but the question now is....which films are the reality??? The laying down xrays are not an accurate representation of what the spine really looks like, but the positioning of the standing xrays isn't a complete picture either. He's probably somewhere in between, which means the curves have progressed some. Bummer.

He is scheduled this Wednesday to have an MRI to check for tethered spinal cord, which is basically when tissue attachments within the spinal column limit the movement of the spinal cord. The attachments can stretch the spinal cord, which interferes with the function of the nerves. If we do find out that Jack has tethered cord, there is a release surgery that a neurosurgeon can do to fix it, which will alleviate the back pain and potentially stop the progression of the scoliosis curves.

Based on the results of the MRI, we will be consulting with a spinal specialist. Jack has seen several in the past (one in Chicago, one in Memphis, and one in Boston). At this point we're waiting on MRI results before we decide what to do next.

So, we appreciate any prayers, good thoughts, or well wishes this week. Jack will be sedated for the MRI, which is always a stress.

Beyond our bad news from the appointment, this summer has been going great. Jack joined the swim team at the gym that we belong to. He is working SO hard to learn all the strokes, diving, and breathing. We are so proud of our little one-legged swimmer, he competed in 2 races last week. His goal was to finish the races and he reached his goal!
Perfecting the belly flop.
We never question his enthusiasm.
One benefit to a lower limb deformity...freakishly strange upper body strength.
He's still riding horses once week. He loves his horses!