Friday, December 17, 2010


This week we took a road trip to Atlanta, Ga for another appointment with Dr. S. For those of you that have been reading the blog for several months, you may remember our Road Trip Adventures that took place in June.

As with any trip our family may endeavor, there is always an amount of chaos, obstacles that need to be conquered and more times than not there is some sort of medical drama.

Monday morning we awoke and I was ready to tackle the monumental task of packing. Maggie was not feeling the best. She had a sore throat and her nose was stuffy, but had no temperature. It was decided that she would try to make it through the school day. She ran herself to the bus as it pulled in front of our home. And I began gathering the medical supplies that were needed for this trip. 20 minutes later I received a phone call from the school nurse informing me that Maggie threw up while on the school bus. I felt horrible. I really didn't think she was fighting anything other than the typical cold virus that floats around aimlessly each year. Bryan had just left for work and was able to swing by the school to pick her up.

I snuggled her into the couch recliner and instantly put an invisible protective bubble around her, making sure the two others were fully aware that they were not to touch or sit closely to her. All we needed was all three of them to be sick while trying to make our way to this appointment, was the thought that swam through my mind!

After packing what felt to be a smallish hospital into the back of our van, clothing for each and entertainment for the drive, we began the journey that was supposed to be a quick trip.

Our trip down to the south was rather uneventful, as a whole. Although, it was a tad surprising for us to be located in "the south" with chilly, winter temperatures just the same as our home in the north east section of the country. I expected it to be at least a little warmer! Thankfully, there was no more puking to be had and Maggie now had that typical, miserably feeling winter cold that I originally suspected.

The appointment with Dr. S went very well. We had faxed him records of Wyatt's more recent GI history last week for his review. He, again, was very thorough and seemed to know Wyatt's history almost as well as we do. We had a very lengthy appointment talking over the results of the testing that he did when we visited in June, but also about where Wyatt is now medically, which is quite different than when we saw him last. He talked us through what to expect with our upcoming appointment to Boston to see the GI motility specialist and how best to utilize some doctors within Wyatt's medical team here.

I suppose it is now officially official, the specialist of the specialists has said it...Wyatt has a Mitochondrial disorder. There is a small chance that it's secondary to another disease, but Dr. S is not feeling it's likely. They took more blood to run the testing for specific genes that, from what I understand, are harder to detect within the testing that was already finished. He did warn us we may never find the genetic confirmation, but he would test all that he can and help us find it if it's possible.

It's comforting to talk to a doctor that really get's it. He knows the complexities of this disease inside and out, it's very clear. He also possesses the ability to explain so that we, the parents, are able to completely understand. It all makes sense. We have been trying to fit together the bits and pieces of symptoms and problems that cropped up over the years. Knowing in a way that only a parent knows, that it all comes together in one way or another. I just knew. I felt it. The nagging feeling that there is more, something more. Wyatt's doctors have never been able to fit these puzzle pieces together. They were scattered amongst the specialties but unable to be pieced together to explain the situation. Dr. S pieced it together, just as Bryan and I expected the pieces to fit. This is not to say the doctors that we continue to see here at home are not great at what they do. They are great and have helped us along through the years. And we hope they will continue to help guide us through this journey that is parenting a child with such needs. I also hope that they all will take Dr. S's offer to assist through this medical journey. He made it clear to us that he is available to help with Wyatt's care and we are welcomed to visit him as needed and or is convenient for us.

There is great uncertainty that lies before us, but there is a small amount of comfort in understanding.

Our trek back to the more northern portion of the country was not as easy as our way to the south. It was riddled with obstacles. Snow, rain, ice.....lots of ice. Cars that have collided with one another, vehicles that slid off the side of the road and into ditches, guard rails, other cars. There were a lot of accidents, a lot of gridlocked traffic. Sitting, waiting, trying to de-ice and de-fog our windows. Calming the restless children that were not happy about sitting in the car while not making progress to our destination that was home. Not to mention spunky child number three was now sick with what appears to be the same miserable cold like virus that number one started with. A 102 temperature and at one time vomiting into a plastic bag while her father tried his best to safely cross two lanes of traffic to pull off of the roadway.

Like I said, a little chaos, a few obstacles and sometimes even a bit of medical drama.

The drive home was extra long and we arrived several hours after our originally forecasted time, but we made it safely. All together, all in one piece, all happy to be home.

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