Ok, so my eyes haven't made it back to normal yet - the pupils are still unequal at varying times throughout the day. Mom checked in with my neurologist about this, and he suggested that we talk to the opthamologist again. So we left the doctor a message, and when he called back, he told mom to bring me right in. We weren't there 5 minutes when he told us he was ordering an MRI - another MRI I should say.
Before I go any further, I need to tell you that the opthamologist is not concerned about what he might find on the MRI. But the last MRI I had when I was three months old didn't scan the areas he needs to see to check for what's going on with my eyes. If the MRI is clear, I'm not sure if we'll ever get an answer about my eyes. It may just be how they are from now on, but the doctor said it should have no medical significance.
That being said, as mom and dad were discussing this upcoming MRI, they realized something they hadn't before. My other MRI was incomplete. There are three parts of the spine to scan, and only one was done. We have no idea why it was incomplete, and when we checked in with the dermatologist, she said the same. There's not much of a point in asking why this wasn't brought to our attention in the past, we know now.
So, since I'm already having another MRI, we're going to re-check my brain and check the rest of my spine for any NCM spots. Hopefully, this will be done next week. Until then, we are praying praying praying that I have NO NCM spots other than the small one they saw in my other MRI. Please join us in this prayer.
Now, go and have a happy Thanksgiving everyone. I - we - are definitely thankful for all of you.
Wednesday, November 24, 2010
Wednesday, November 17, 2010
A Big Scare
It has been a long, difficult, and exhausting past 24 hours. It all started last week, when mommy noticed that my head was growing really well. She called the doctor to see if this is normal growth, or a sign of danger, but it wasn't so drastic that we had to worry at that point. That same day, I started a simple cold... nothing out of the ordinary... until last night. Mid-evening yesterday, I began to get a sick tummy and was throwing up. After that started, mommy noticed that my eyes looked funny and my pupils were not the same size. She already knew from research that this could be related to a neurological dysfunction, and that got both her and daddy a little worried. My tummy continued to make me sick, and one of the worst complications of NCM came to their minds -- hydrocephalus (fluid on the brain). This is one symptom of NCM that mommy and daddy are on constant watch for, so they are very familiar with the indications, and these were three big ones.
My auntie came over to stay with big sis, and we rushed off to the children's hospital. One good thing is that they get you in right away when it's something so concerning. We saw several nurses, and finally the doctor came in. It was hard to tell what she thought, but she wouldn't let mommy feed me in case it turned out that I needed emergency surgery. That certainly didn't make anyone feel better.
An hour or so after getting there, I got my first (and hopefully last) CT scan. Dad took this picture of me going in, and I swear I was a better sport than it looks like! It only took a few minutes and it wasn't as scary as it sounds.
The Lord was watching over me, because the CT was normal, and I do not have hydrocephalus. What a relief for everyone!
Still, however, my pupils continued to change and fluctuate from symmetrical to unequal. Doctor after doctor came in to check me out, and no one really had an answer for us. The ER contacted the on-call neurologist, and the opinion we were left with was that I probably have a viral infection causing the sick tummy and funky eyes. Mom and dad didn't like that answer so much, but that's what they stuck with.
This morning, mommy called and got me an emergency appointment with my own neurologist. And before we got there, she spoke with my pediatrician and my dermatologist. Interestingly, all three of them agreed with the hospital -- it's likely a viral infection. That seems a bit strange to us, but if so many medical professionals agree, it gives us the littlest bit of relief. Mom and dad are supposed to keep an eye on me for the next week, and hopefully it will all go away.
So, we are very thankful that this doesn't seem to be a complication of my NCM. However, needless to say, we will continue to hope and pray for this to correct itself, and quickly. We would certainly appreciate anyone joining us in this effort.
My auntie came over to stay with big sis, and we rushed off to the children's hospital. One good thing is that they get you in right away when it's something so concerning. We saw several nurses, and finally the doctor came in. It was hard to tell what she thought, but she wouldn't let mommy feed me in case it turned out that I needed emergency surgery. That certainly didn't make anyone feel better.
An hour or so after getting there, I got my first (and hopefully last) CT scan. Dad took this picture of me going in, and I swear I was a better sport than it looks like! It only took a few minutes and it wasn't as scary as it sounds.
The Lord was watching over me, because the CT was normal, and I do not have hydrocephalus. What a relief for everyone!
Still, however, my pupils continued to change and fluctuate from symmetrical to unequal. Doctor after doctor came in to check me out, and no one really had an answer for us. The ER contacted the on-call neurologist, and the opinion we were left with was that I probably have a viral infection causing the sick tummy and funky eyes. Mom and dad didn't like that answer so much, but that's what they stuck with.
This morning, mommy called and got me an emergency appointment with my own neurologist. And before we got there, she spoke with my pediatrician and my dermatologist. Interestingly, all three of them agreed with the hospital -- it's likely a viral infection. That seems a bit strange to us, but if so many medical professionals agree, it gives us the littlest bit of relief. Mom and dad are supposed to keep an eye on me for the next week, and hopefully it will all go away.
So, we are very thankful that this doesn't seem to be a complication of my NCM. However, needless to say, we will continue to hope and pray for this to correct itself, and quickly. We would certainly appreciate anyone joining us in this effort.
Thursday, November 4, 2010
It's Getting Close!
We are less than two months from my first surgery ... 8 weeks from today to be exact. The hospital has already called to pre-register me, and mom has already received the forms for my pre-op physical. My vaccinations are all up-to-date, which I had to receive early to accommodate my surgery schedule. I will get my last two shots tomorrow and one month from tomorrow, and then I'll be ready!
Today I saw an opthamologist, at my neurologist's request. It was just supposed to be a baseline examination, and for the most part, it was. He dilated my eyes and looked inside them. Overall, he considered it a "normal" examination, but he did find some pigment at the optic nerve inside one of my eyes. He said it's common and has no medical significance, so there's nothing to worry about. He just told mom to bring me back in 2 years, and he'll keep an eye on my eyes probably annually from there.
We are also only about 3 weeks away from my appointments in San Fransisco. Mom and dad are really looking forward to that and hopefully confirmation that my NCM is somewhat insignificant. I am continuing to develop wonderfully, so that is a good sign. Mom is writing this with a sad heart, however, keeping in mind that another young boy named Ryan, from Australia, recently died from complications of his NCM. We are sending prayers to him and his family.
On another note, our cookbook fundraiser has been a great success. There are few books left, and mom doesn't have any of them in hand. Our church has been instrumental in helping us sell them, and has even received many donations from the tremendously generous congregation. The church has around 50 or so books left, and then we will be out! Mom hasn't decided yet whether she will order more, but she will keep everyone posted. She says that if she does, it will be after surgery. So, if anyone missed out, let us know right away and mom can grab the books from the church. I'm so glad that everyone loves my book. That really helps make the project worthwhile.
Today I saw an opthamologist, at my neurologist's request. It was just supposed to be a baseline examination, and for the most part, it was. He dilated my eyes and looked inside them. Overall, he considered it a "normal" examination, but he did find some pigment at the optic nerve inside one of my eyes. He said it's common and has no medical significance, so there's nothing to worry about. He just told mom to bring me back in 2 years, and he'll keep an eye on my eyes probably annually from there.
We are also only about 3 weeks away from my appointments in San Fransisco. Mom and dad are really looking forward to that and hopefully confirmation that my NCM is somewhat insignificant. I am continuing to develop wonderfully, so that is a good sign. Mom is writing this with a sad heart, however, keeping in mind that another young boy named Ryan, from Australia, recently died from complications of his NCM. We are sending prayers to him and his family.
On another note, our cookbook fundraiser has been a great success. There are few books left, and mom doesn't have any of them in hand. Our church has been instrumental in helping us sell them, and has even received many donations from the tremendously generous congregation. The church has around 50 or so books left, and then we will be out! Mom hasn't decided yet whether she will order more, but she will keep everyone posted. She says that if she does, it will be after surgery. So, if anyone missed out, let us know right away and mom can grab the books from the church. I'm so glad that everyone loves my book. That really helps make the project worthwhile.
Subscribe to:
Posts (Atom)