Jacy's MRI Update

I am thrilled to share an update on Jacy that is so full of good news!

As you know, for the past couple of weeks Jacy has started to drag her left foot a little bit when she walks. We were concerned that her tethered spinal cord was the reason. If the stretch on the spinal cord had worsened, a de-tethering surgery would be necessary.

Jacy had an MRI last Monday. As usual, she did awesome! Jacy was fully sedated for the 2 hour scan and recovered from it beautifully! She is always very snuggly afterwards, which is mommy’s favorite part! On Wednesday of last week we were able to meet with her Neurosurgeon, Dr. Manwaring, to discuss the results of the scan. He is so pleased with Jacy and her progress!!! He is amazed at how well she is walking and getting around, and very impressed with what a well mannered little girl she is!

The MRI showed that the tethered cord is NOT the reason for her dragging her foot. The cord does not look stretched to the point of being stressed… NO SURGERY! He explained that everyone has one side of their body that is weaker than the other. Often times, in children with spinal cord malformations this weakness is more pronounced. Jacy is just showing us that her left side is weaker than the right side. He also took a pointy stick and poked her up and down both sides of her legs. It is fairly obvious that there are areas on her left leg that she doesn’t feel at all, or as well as she does on the right side. He has recommended that we get in touch with a Pediatric Orthopedic Surgeon for an evaluation. They will be able to help us determine if a corrective shoe or brace might be helpful to her. We have also increased her physically therapy to 2-3 times a week, which includes her gymnastics class that she LOVES! The whole time that the Dr. was poking Jacy with the stick she just sat there with her hands clasped in her lap, watching every move he made. She never tried to get away and never made a sound. The Dr. looked at me and said, “She is the most well mannered little girl I have ever seen!” I smiled and said, “I KNOW!” Then he laughed and said, “Your next kids WILL NOT be like this!” Jay and I both laughed and said, “WE KNOW!” As we were getting ready to leave his office, the Dr. turned to me one more time and said, "She is the best little girl I have ever seen!" We couldn't be more proud of her!

Other good news to share is that Jacy’s shunt worked wonders! All of the fluid build-up on the top of her brain is gone and her ventricles look much better. They now have shape and angles to them and are no longer bulging. The Dr. said that it is hard to know if the shunt is even functioning anymore, or if Jacy is doing it all on her own. When Jacy turns 3 he would like to cap the shunt and see how Jacy responds. If the fluid does not start to build up again, it means that Jacy is doing all the work herself. At that point the Dr. feels that we will be able to take the shunt out… making Jacy SHUNT FREE again! If fluid starts to build up, then we have a couple of options that we can try, including a procedure called a 3rd ventriculostomy, where they create a hole in the floor of her ventricles to help with drainage, or another shunt can be placed. We are waiting until she is 3 because there is not a good success rate when these procedures are done on children younger than 3. That gives us a whole year before we have to do anything. (Can you believe that she is almost 2!!!)

The scan also showed that Jacy’s kidneys look good and healthy. There were no signs of fluid build up! This was a concern because of her bladder function. Jacy is not able to void herself completely when she goes potty. What is not emptied from the bladder was refluxing into her kidneys when she was very young. To protect her kidneys we continue to catheterize her every 3-4 hours throughout the day… It’s working!

Jacy is such a joy and a blessing in our home! I can’t imagine our lives without her!!! She is so full of personality and has a great attitude (most of the time)! Her latest milestones (if they should be called that!) include sticking her fingers in both her ears and singing when we try to talk to her. She is also getting good at sticking her tongue out… but only when provoked. =) She LOVES giving kisses-but only on the cheek. She will kiss one cheek for a while and then grab your face to turn it so she can smooch the other side as well. She loves to draw and color-and usually keeps it on the paper! She also loves to sing and dance, and is becoming quite the climber. She is almost tall enough to get up on the couch all by herself!

Thank you all for the concern and care that you have shown our family. Our trials seem small when we have so many people cheering us on! We wouldn’t be where we are today without your love and support!

Love,
Jody