Yesterday, Jack had his 3rd visit to the neurosurgeon, Dr. Trumble. Susie met me there, Jack in tow at about 3pm, as I arrived from work. Jack was very good while waiting, talking to all the kids with large or oddly shaped heads like himself. It was a meeting of the mysterious minds if you will.
By 4pm we were done with the appointment with good news. Trumble informed us that there was no change in the status of the cyst or fluid accumulation. Therefore, the plan is to follow up in 6 months to check on it again.
The appointment went well overall. Although, it was very hard to look at images, Trumble shows us the films from the MRI's each time and reviews what we are seeing, of Jack's so-called abnormal brain. Basically, when looking at it, it appears that part of the parietal hemisphere is missing. In fact, it is likely simply misshapen. It has either grown around a fluid filled sac (the cyst) or there is no cyst at all and the brain is just oddly shaped. According to Trumble, we may never know. The only way we would know is if there is a change in the way the brain looks or they actually operate and open the skull which will only happen if there are changes in the size of the cyst or shape of the brain.
So, the monster eludes us once again. It's hard to see something in your baby's head that isn't "normal". It's hard not to know what this actually holds for his future. In the end, however, it's great to know he's doing so well now. Hopefully, we never know why or what is in there.
Dr. Trumble, by the way, is the best. He always appears to have time for us despite a full waiting room. He's very attentive and sensitive to our situation, despite having done brain surgery earlier in the day that may have saved someone's life. He sends us a copy of his case note via e-mail after each visit allowing us to keep a record of what he has told us and what is in Jack's patient record. Also, each of the rooms in his practice has a theme (Batman Room, Dora The Explorer Room, Finding Nemo Waiting Room, etc.). Jack loves the themes.
Thanks Trumble, for making this more than crappy experience a great deal better than it would be and probably is for many others!
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3 comments:
WONDERFUL! See you soon.
Looking forward to your visit. Too bad it will only be for one night. I can't believe it's been almost 8 months since we've seen you guys. See you soon.
So true... the relieving "no change" news is great, but it is very hard to look at pictures of your child's brain and not even really know quite exactly what you're looking at, but you can definitely tell that it doesn't look "normal". Yet, living day to day life with Jack makes it hard to believe that there's anything abnormal in there anyway. He does everything he's supposed to... it's weird that if our pediatrician hadn't thought his head was big to start with we probably would have never known about his "brain issues". It makes me wonder about my own brain, having never had an MRI or Cat scan. Maybe it's a lovely gift I bestowed upon my son. Who knows?
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