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.
Wednesday, November 14, 2007
Monday, October 29, 2007
October 29, 2007
Presley's MRI will be on November 13th. The MRI will be performed at Shands under general anasthesia. The reason for the anasthesia is because keeping a 1 year old still for a full MRI is very unlikely. This will be Presley's third time under general in 2007, so he is becoming a professional at this. Hopefully, he won't be too out of sorts as he comes out of the anasthesia, although it does seem to confuse kids and makes them quite cranky.
We will have the follow-up appointment with the neurosurgeon on November 14th. We anticipate having the information we'll need to make a decision on his treatment at that appointment.
In the meantime, Presley is doing quite well. His glasses are awesome, and he doesn't seem to have any issues wearing them. He looks like Elton John and Buddy Holly got together and designed his glasses.
We will have the follow-up appointment with the neurosurgeon on November 14th. We anticipate having the information we'll need to make a decision on his treatment at that appointment.
In the meantime, Presley is doing quite well. His glasses are awesome, and he doesn't seem to have any issues wearing them. He looks like Elton John and Buddy Holly got together and designed his glasses.
Thursday, October 18, 2007
October 18, 2007
It's been quite a while since I've updated the blog. Things had been going nicely since Presley's surgery in February. He was doing well, slightly delayed on development, but nothing too concerning. He's been in physical therapy for a few months now to try and improve his strength.
We visited Shands a couple of months ago, for a standard follow-up, which we'll be doing regularly. There was concern about Presley's head growth. His forehead had become very pronounced (they called him a thinker), and so Dr. Pincus (his neurosurgeon) asked for an MRI. The result appeared to show an excess of fluid on the exterior of his brain, which would probably resolve itself in 18 - 24 months. The name of the condition is benign extra-axial fluid. Key word to us was benign.
We had another visit with Dr. Pincus yesterday, and things appear to have changed. Now, they are much more concerned about excess fluid IN and surrounding the brain. It's a condition known as hydrocephalus ("water on the brain"). While he is happy and doesn't appear to have any discomfort, as some do, there is great risk with this condition. It could be the source of his developmental delays, and if untreated, has the risk that I prefer not to comment on.
The doctor's office should be calling us with a scheduled date & time for a follow-up MRI (it should be in the next 2 - 3 weeks). We'll have a two day trip to Shands, the first day they will perform the MRI while Presley is under anasthesia. The second day, we will meet with Dr. Pincus to discuss what needs to happen. If Dr. Pincus is correct, which he seems to be pretty confident of, we will be discussing the procedure that will need to take place. The primary procedure that has been discussed so far is placement of a shunt. It's basically a device that is placed inside one of the brain ventricles, with a catheter running down into his abdomen. The goal is to release the excess fluid and allow it to flow to a location where it can be absorbed by the body. It appears that this will be a lifelong condition, and he will need his shunt replaced periodically throughout his life.
While this is still not the diagnosis, it seems to be leaning towards that. Needless to say, we are extremely stressed about this. The MRI can't come soon enough so we can find out what needs to be done and take any actions as soon as possible.
On a brighter note, we picked out Presley's eye glasses last evening. He is pretty darn far sighted, and still has the nystagmus (rythmic eye movement back and forth) and strabismus (crossed eyes). The pediatric opthalmologist is hoping that the glasses will help with the strabismus, but it seems that he will still need surgery on both eyes in the future to help straighten them out.
We can tell you this ... we're just glad we have a happy little boy!! Through all of this, he smiles all the time. More proof that ignorance is bliss.
Next time you sit down to say your prayers, please say one for Presley. He's been a trooper, but could sure use all the support he can get!!
We visited Shands a couple of months ago, for a standard follow-up, which we'll be doing regularly. There was concern about Presley's head growth. His forehead had become very pronounced (they called him a thinker), and so Dr. Pincus (his neurosurgeon) asked for an MRI. The result appeared to show an excess of fluid on the exterior of his brain, which would probably resolve itself in 18 - 24 months. The name of the condition is benign extra-axial fluid. Key word to us was benign.
We had another visit with Dr. Pincus yesterday, and things appear to have changed. Now, they are much more concerned about excess fluid IN and surrounding the brain. It's a condition known as hydrocephalus ("water on the brain"). While he is happy and doesn't appear to have any discomfort, as some do, there is great risk with this condition. It could be the source of his developmental delays, and if untreated, has the risk that I prefer not to comment on.
The doctor's office should be calling us with a scheduled date & time for a follow-up MRI (it should be in the next 2 - 3 weeks). We'll have a two day trip to Shands, the first day they will perform the MRI while Presley is under anasthesia. The second day, we will meet with Dr. Pincus to discuss what needs to happen. If Dr. Pincus is correct, which he seems to be pretty confident of, we will be discussing the procedure that will need to take place. The primary procedure that has been discussed so far is placement of a shunt. It's basically a device that is placed inside one of the brain ventricles, with a catheter running down into his abdomen. The goal is to release the excess fluid and allow it to flow to a location where it can be absorbed by the body. It appears that this will be a lifelong condition, and he will need his shunt replaced periodically throughout his life.
While this is still not the diagnosis, it seems to be leaning towards that. Needless to say, we are extremely stressed about this. The MRI can't come soon enough so we can find out what needs to be done and take any actions as soon as possible.
On a brighter note, we picked out Presley's eye glasses last evening. He is pretty darn far sighted, and still has the nystagmus (rythmic eye movement back and forth) and strabismus (crossed eyes). The pediatric opthalmologist is hoping that the glasses will help with the strabismus, but it seems that he will still need surgery on both eyes in the future to help straighten them out.
We can tell you this ... we're just glad we have a happy little boy!! Through all of this, he smiles all the time. More proof that ignorance is bliss.
Next time you sit down to say your prayers, please say one for Presley. He's been a trooper, but could sure use all the support he can get!!
Wednesday, February 28, 2007
February 28, 2007 7:45pm
I'm happy to say there isn't much to report right now.
Presley is doing wonderful! We couldn't be happier. He's eating well, gaining weight, and sleeping pretty regularly.
As mentioned before, we have his first follow up appointment at Shands in about 3 weeks. Next Friday he goes to the opthamologist to look at those crossed eyes.
I've updated the Presley image page with a before and after picture. A few things you'll notice ...
*His face is symmetric!!!!!!!!!!!
*He has an orbital bone above both eyes!!
*His forehead looks shorter and much more pronounced
*His face is rounder
*There is a little extra padding between his eyes ... that's where 2 screws are
*He looks very pensive ... this is probably a combination of him actually having structure around both eyes, and an overly pronounced forehead. The forehead was built a little higher to accomodate changes during growth. It should even out.
Look for more pictures over there as well.
Presley is doing wonderful! We couldn't be happier. He's eating well, gaining weight, and sleeping pretty regularly.
As mentioned before, we have his first follow up appointment at Shands in about 3 weeks. Next Friday he goes to the opthamologist to look at those crossed eyes.
I've updated the Presley image page with a before and after picture. A few things you'll notice ...
*His face is symmetric!!!!!!!!!!!
*He has an orbital bone above both eyes!!
*His forehead looks shorter and much more pronounced
*His face is rounder
*There is a little extra padding between his eyes ... that's where 2 screws are
*He looks very pensive ... this is probably a combination of him actually having structure around both eyes, and an overly pronounced forehead. The forehead was built a little higher to accomodate changes during growth. It should even out.
Look for more pictures over there as well.
Tuesday, February 13, 2007
February 13, 2007 7:25pm
New pictures of Presley, from yesterday, were posted today. The only thing that really stands out, are his eyes. His right eye appears to be lower than his left. I think this might be an illusion caused by the swelling on his right lid.
Outside of being fussy, he is healing so well! He is even down to minimal amounts of Tylenol for the pain. It's not required every 4 hours like it was a couple of days ago.
We scheduled his first surgery follow up on March 20th, and his appointment with the opthamologist on March 9th. Based on our initial visit with the opthamologist, it's possible that he might prescribe glasses.
We'll continue to post details as things continue to progress. This will probably be scaled back to once a week or so. We'll continue to update pictures as well, even if there is nothing to report in text.
Outside of being fussy, he is healing so well! He is even down to minimal amounts of Tylenol for the pain. It's not required every 4 hours like it was a couple of days ago.
We scheduled his first surgery follow up on March 20th, and his appointment with the opthamologist on March 9th. Based on our initial visit with the opthamologist, it's possible that he might prescribe glasses.
We'll continue to post details as things continue to progress. This will probably be scaled back to once a week or so. We'll continue to update pictures as well, even if there is nothing to report in text.
Monday, February 12, 2007
February 12, 2007 11:32am
Presley is making a nice recovery. His swelling is fairly minimal now, and you can start to see some definition in the sides of his face again. This morning, I was able to see a bump on this side of his face that was a plate or screw. The neurologist told us that we would probably see those as the swelling went down, and we shouldn't be concerned. They will dissapear over the next year or two. Both his eyes are showing bruising, as well as the sides of his head near the incision. His eyes are still a bit swollen, so they look a little droopy.
Presley has had some diffculties with his eyes crossing. This became more apparent in the months leading up to the surgery. We saw an opthomologist, who suggested it might be related to far sightedness in his right eye. He wanted to wait until after the surgery to re-check him, in case the surgery had any impact. It doesn't appear to have helped at all, in fact it may be a little worse. It might just seem worse because of the new shape of his head. We are scheduling the follow up visit this week. They will probably want to wait until the swelling is gone from his eyes.
Our biggest challenge since we got home is getting him to sleep. He's waking up a good amount, and not getting the normal 10 hours of straight sleep that he got before. I'm sure he'll get back on track.
More pictures should be posted tonight.
Presley has had some diffculties with his eyes crossing. This became more apparent in the months leading up to the surgery. We saw an opthomologist, who suggested it might be related to far sightedness in his right eye. He wanted to wait until after the surgery to re-check him, in case the surgery had any impact. It doesn't appear to have helped at all, in fact it may be a little worse. It might just seem worse because of the new shape of his head. We are scheduling the follow up visit this week. They will probably want to wait until the swelling is gone from his eyes.
Our biggest challenge since we got home is getting him to sleep. He's waking up a good amount, and not getting the normal 10 hours of straight sleep that he got before. I'm sure he'll get back on track.
More pictures should be posted tonight.
Saturday, February 10, 2007
February 10, 2007 7:04pm
Presley is doing excellent. His swelling has gone down even more. Both his eyes are almost completely open, and the bruising has gone from the black & blue colors to the yellowish brown. He's smiling again, and we're just trying to get him back into the regular schedule he had prior to the surgery.
We've added Day 6 pictures. If you were concerned about looking at the harsher pictures, these are very nice. They show his happy face, the little bruising, and you can see where the stitches run along his head. They are very clean and it is not frightening to look at.
We've added Day 6 pictures. If you were concerned about looking at the harsher pictures, these are very nice. They show his happy face, the little bruising, and you can see where the stitches run along his head. They are very clean and it is not frightening to look at.
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