Wednesday, March 10, 2010

Tethered Cord Syndrome

So it's 7:10 in the morning, and I am sitting in a quiet kitchen all by myself. This is odd, and it definitely feels very strange. Richard and the girls are on their way to Children's Hospital in Minneapolis where Maddie will undergo two tests today to determine how effectively her bladder and kidneys are working. Richard is on his own with the girls today as I have to go to my doctor for my pre-op physical.

Okay, so let's back up. Maddie has a soft, fatty mass in the small of her back. This was NOT noted in her medical reports from China, but we noticed it the first day we met her. Because we had previously reviewed the file of a child with spina bifida, I had done a lot of research on it as well as its related maladies. My first thought upon seeing the swelling near the base of her spine was that she had some form of spina bifida, but many of my fears were allayed when we realized that Maddie was completely potty trained and that even though she couldn't walk because of her lower leg deformity, the movement of her lower body was not compromised in any other way. So let's jump ahead to October of 2009 as we prepare for Maddie's foot ablation. The doctors wanted to have an MRI of Maddie's spine just to be sure there was nothing there that would interfere with the planned operation. The MRI was performed, and the neurologist gave the go ahead for surgery with the stipulation that we would meet with him after the beginning of the new year to fully discuss the MRI and its implications. In February, we finally met Maddie's neurologist and went over the results.

The fatty tissue that is visible on Maddie's back, called a lipoma, is a non-issue. It is not cancerous, nor will it ever turn cancerous, and it does not in any way impinge on Maddie's mobility. What is of concern is the fatty tissue that resides within the spinal column itself which is what the MRI revealed. The spinal column is meant to float free, so to speak, in fluid, and if anything, fatty tissue for example, attaches itself to the spinal column, lots of problems can occur as a child grows and the tissue begins to tug on the spine. The name for this condition is Tethered cord syndrome. The disorder is progressive, and left untreated, abnormal stretching of the spinal cord will occur as a child grows resulting in sensory and motor problems and loss of bowel and bladder control. Tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development and is closely linked to spina bifida. It is also the cause of Maddie's lower leg anomaly which was a surprise to us. We had no idea the two conditions were at all related.

So though Maddie is potty trained, we have no idea what's really going on with her internal organs, so today's tests will determine if kidney and bladder function are normal. If they are, we may not need to do anything right now other than take Maddie in for a recheck every six months. It is highly likely that Maddie will require surgery at some point to remove the tissue attached to her spine, and Richard and I think that an operation will probably be needed sooner rather than later before there is any loss of mobility or incontinence becomes a problem.

So there you have it. I don't expect that we will meet with the neurologist for a few weeks, but when we do, we'll know more, and then we'll take the next step...whatever that may be.

Thursday, March 4, 2010

To Quote Charles Dickens...

"It was the best of times. It was the worst of times." In this case, I speak not of the French Revolution, but of our 2010 Florida vacation.

Best of times:
This is our first vacation as a family of four, and that in and of itself is very exciting.
The girls have also proven to be stellar travelers. We had an evening flight out of Minneapolis last Friday night, so we didn't land in Florida until 10:30 p.m. central time. That's two and a half hours past bedtime. By the time we got our luggage and our car and made the short trek to the hotel we were going to be staying in for just one night, it was midnight. There wasn't one meltdown all evening! And they were so well behaved on the plane. We just couldn't have asked for an easier time of it on the way down.
The girls are easily pleased. We haven't done anything that I would call spectacular, but Maddie and Ibby seem to be enjoying themselves immensely. Whether we take a walk around the neighborhood where our rental house is and collect treasures or go to the park or the beach or a restaurant or sit on the dock and throw rocks in the canal or float in the pool or watch the pelicans catch fish or kick a soccer ball around the front yard or just hang out on the lanai soaking up the sun, both girls have been really content.
Despite our change of locale (and weather and time zone), we have managed to maintain a daily routine, and I think that has helped immensely with everyone's mood. The girls are exhausted when nap time rolls around, and Richard and I have allowed ourselves a few afternoon snoozes as well. What a luxury!
The sun has been shining every day. Even on the two days we had rain in the morning, the sun showed itself in the afternoon.
We had a few days where we did not have to wear our coats outside. That little taste of summer was intoxicating!
How lucky we are to have been able to get away from Minnesota and the daily grind and the snow and cold (though I hear spring may have sprung while we've been gone) and enjoy some time together.
Renting a house was definitely a smart move on our part. It's really nice to have enough space to spread out and move around, and having our own pool has been fun though we haven't been able to swim in it as much as we would have liked. We are situated on one of the many canals that are a unique feature of Marco Island, and we are only three lots from open water, so we've seen some interesting water creatures (though no dolphins or manatees), and lots of boats have gone by which always excites the girls.
Fresh seafood. Enough said.
The Worst of Times:
The sun has been shining, but the wind has been blowing, and the temperatures have not been the warmest. Earlier in the week, we could shed our coats by late morning, but starting Wednesday, cooler temperatures settled in, and we've been forced to wear long pants and jackets (though we've been refusing to wear socks!)
Richard has been working almost continually since we arrived. Poor guy has gotten very little sleep and almost zero time to relax. This has put a crimp in our schedule, so we have not been able to get out and see some of the attractions we were really looking forward to like Corkscrew Swamp Santuary and Big Cypress National Preserve. We'll just have to save those activities for another visit.
It's been cool enough at night that we've had to run the furnace.
No dolphin or manatee sightings!
Thinking about what is facing us when we get home (Maddie has some medical tests to undergo on March 10...more about that later...and I am having knee replacement surgery on March 15...(please tell me I'm too young for that kind of surgery because I am, but it's still necessary)...has been messing with my ability to sleep at night, so my desire to catch up on some ZZZs really isn't panning out.

All in all, the good probably outweighs the bad, but this hasn't been the best vacation we've ever had. Well, it has and it hasn't. Know what I mean? Good thing we are headed back here in June, so we can attempt a do over.

We'll be back in Minnesota late Saturday morning. Until then, we'll try our best to enjoy our last day and a half.