November 14, 2007

We just got back from our trip to Shands. We got a very surprising result back from the MRI that was done on Tuesday morning. Presley's MRI came back normal. There were no visible signs of hydrocephalus in his scans. When they told us, our jaws dropped to the floor. We fully expected to be discussing surgery today, and we were prepared for that. We weren't prepared for the positive shock that we got. Needless to say, we're beside ourselves with happiness about the results.

So, this brings up an interesting question that we've been asked by some family and friends. Why did they tell us that he had hydrocephalus, when he really didn't. Don't think that out of joy we decided to skip that question. While we were thrilled with the results, we were a bit uneasy about why we spent the last month worrying ourselves over this unnecessarily, and how did we know they weren't making a mistake on the new diagnosis. I'll try and get it close to how it was explained to us ...

MRI's are made up of slices of images taken of the brain. Just like slices of an apple, no two are alike. When they compared the MRI that was done in July, with the one that was done in January, they saw inconsistencies that appeared as both benign extra-axial fluid (the kind outside of the brain that is not a problem), and fluid inside the brain. The increase in fluid inside the brain, in combination with the "soft" signs, such as his prominent forehead and veins, and developmental delays, pointed to hydrocephalus. Going back to the apples, comparing the MRI done in Jaunary with the one in July was like comparing apples to oranges. If the slices don't line up, the comparison can show differences.

The first two MRI's Presley had were what they refer to as "haste" MRI's. They are appropriately named that because they are done in haste. They are meant to be a quick scan to look for any obvious problems in, and around, the brain. The MRI done tuesday was a complete brain scan, and therefore had greater detail. The comparison of all three MRI's showed Tuesday's & January's to be closer in regard to fluid, with the difference being that the extra-axial fluid has actually decreased, which is a good thing.

While we continue to be unhappy about having to go through all the anxiety, we undersstand that they felt comfortable enough with the diagnosis, and the anticipated results from the MRI, to move forward as if it was hydrocephalus. The MRI was the next diagnostic step, and we believe they did exactly what they should have. We are just blessed that we have the outcome, and are extremely happy to know that Presley has a medical team that is thorough in their diagnostics, and up front with us about their beliefs. It would have been just as difficult for us to have been told to get an MRI, then show up today and find out he needed surgery without having any warning.

All that being said, Presley did great through all of this week. We left Monday night to drive to Shands. We were at the hospital at 7:20am (just enough time to grab coffee before the procedure), and checked in at 7:30am. We had an unexpected wait due to a younger child who also needed an MRI. They try to do the youngest first because they are not allowed to eat or drink for a couple of hours prior to anasthesia. It was 9:30am when we got into the back, and we were told that we would have to hold Presley while they gave him the gas to sedate him. The reason for having us there is to reduce his anxiety level. Hopefully, it reduced his because it increased ours. Watching your child be put under anasthesia is very intense and very emotional. He will never remember it, but we will never forget it.

The procedure took about 1 hour, and we went into recovery with him. We had a wonderful pair of nurses that sat with us and explained a lot of the anasthesia process, as well as what to expect when he woke up. To our suprise, he woke up very happy. Nothing like our last experience with anasthesia for him. He drank about 3 bottles of apple juice within the hour and we were allowed to leave. He stayed awake for the rest of the day, with just a brief cat nap in the car. He spent the afternoon crawling around and playing happily.

He woke up early today and was a bit cranky for most of it. He rubbed his eyes a lot, but with all the stress we were rubbing our eyes a lot too out of fatigue. By the time we got to the house, at 7:00pm, he was ready for bed and has been out like a light since then. We are not far behind him!

Presley's next appointment is in February, and we hope his development continues to improve. Based on his developmental changes in the last 4 weeks, they opted not to refer him to a neurologist for any further testing at this point. They feel like he might just be a little delayed and will catch up. If the past 4 weeks are an example of what's to come, he will be running laps before Christmas.

As always, we are so unbelievably appreciative for all the thoughts and prayers. Based on our expectations, todays results were a miracle to us, and the generosity and support of our family and friends helped keep our spirits up.

A very special thank you to our friends and family who took care of us this week. It was so comforting to know that the kids were with such caring people, and we didn't have to worry about their well being. We were also welcomed with warmth and caring Tuesday night and Wednesday morning when we travelled about an hour south of Gainesville to be with family.

With Presley's development picking up, the posts should become more frequent. If you'd like to follow along, please come back and check out the latest news. There will also be new pictures updated on the site over the upcoming weeks.