Wow, I can't believe it has been a year and a half since we started this adventure with Easton's first ultrasound. It sure has been a huge lesson in patience and it continues still. He just had his first birthday and is doing better than ever. He is down from 5 medications to 1, his kidney reflux has resolved, and he hasn't had a seizure since December. Plus, he is finally sitting by himself (with pillows around him). Yes, he is still behind but is making progress everyday! He is such an easy going boy, with the cutest smile & laugh - it makes all our troubles & worries with him worth it. He is like sunshine to the soul.
He had surgery a month ago on his manly parts, and everything has healed nicely. His left side was brought down, but his right was still up too far. The doc had to connect new blood vessels to the right and hope it survives. Easton had a follow up on surgery today and he will have another kidney scan in a few months. If his kidneys are still draining too slowly he'll have surgery on them along with his right teste. Besides that we just continue to have check- ups with his 5 different doctors. We're so glad we have such wonderful doctors to help us out and keep our Easton healthy. We feel so blessed!
Thursday, May 16, 2013
Tuesday, May 14, 2013
Unconclusive
Yep, your guessed it. That option that left us hanging with no knew knowledge? That's what we got. Basically the geneticist said we don't know enough for now, but we've got plans for another MRI at 2 years old, and hope to learn more then.
I mentioned before that this would be the hardest route for me. But I also realize that without a 'label', he also doesn't have a limit. So we're fine with the news (or lack thereof). The doctor gave us the option of doing more random tests to see if we come up with anything, but didn't seem too hopeful that we would. He said the MRI at 2 years old would be our best bet because at 2 more of the brain is developed and you can see any irregularities better.
The only reason we might want to take the chances (and expense) with those random tests is if one of them showed us that he might have a tendency toward a certain ailment and there is something we can do now to help alleviate that.
But for now, he's happy, healthy and learning every day. That's our Easton Experience, and we love it!
I mentioned before that this would be the hardest route for me. But I also realize that without a 'label', he also doesn't have a limit. So we're fine with the news (or lack thereof). The doctor gave us the option of doing more random tests to see if we come up with anything, but didn't seem too hopeful that we would. He said the MRI at 2 years old would be our best bet because at 2 more of the brain is developed and you can see any irregularities better.
The only reason we might want to take the chances (and expense) with those random tests is if one of them showed us that he might have a tendency toward a certain ailment and there is something we can do now to help alleviate that.
But for now, he's happy, healthy and learning every day. That's our Easton Experience, and we love it!
Sunday, May 12, 2013
Mixed Emotions
Kind of mixed emotions right now. You know that feeling if when you really want to finally know something--like whether you passed an exam, got accepted to a job or made the big part in the next play, but you're nervous about what the answer might be? That's kind of where we are right now.
In two days we'll meet with the geneticist, who started running tests and studying Easton's 'condition' over 4 months ago, to see what he discovered and what his diagnosis is.
On the one hand, it will be such a relief to finally at least know and stop wondering. We've become pretty patient through this Easton Experience, but even then, four months is a long time.
So, what are the possibilities? What could he tell us? There are a few possibilities. One being that there is no diagnosis because he doesn't have a 'syndrome'. This would of course be our highet wish, he has been developing well lately and it could be that he's just a little behind but will catch up as he grows.
Another possibility is an obscure syndrome that basically means he'll be a little behind in life and possibly have seizures and some health problems. This is kind if where we're at right now. And even with the possibility of seizures coming back, and some kidney problems and some delayed development, he is still a very happy child. He's always clapping with a big smile on his face. Often he wakes up, claps a few times, then goes back to sleep. I can handle a few health issues and delayed development if at least he's happy. His smile can melt the hardest heart and lights up the room like an atomic bomb.
Another possibility may be harder news, though given the circumstances, isn't too likely. Many syndromes don't have a long life expectancy. I mention this option, not because we think it will come to this, but just to help others know of the thoughts a family goes through when waiting this kind of news.
Probably the worst possibility would be no news. Inconclusive. Often times its better to at least know something, even if it's bad, than know nothing. Although in some ways, by not labeling him, you also aren't limiting him. Not even the sky is the limit if you don't have limits. So this possibility may very well be a blessing in itself.
Either way, and no matter the news, we are so grateful to have Easton in our family. Each of our kids is special, and brings something wonderful into our family. One part of me dies inside every time I think of Easton not being able to experience life like other children, but another part stands in awe at the majesty and power enveloped in that tiny spirit and I applaud along with him over the smallest, yet monumental feats.
And if, by some small chance the results are less than favorable in two days, I will have peace. For I know that through Christ I can do all things.
In two days we'll meet with the geneticist, who started running tests and studying Easton's 'condition' over 4 months ago, to see what he discovered and what his diagnosis is.
On the one hand, it will be such a relief to finally at least know and stop wondering. We've become pretty patient through this Easton Experience, but even then, four months is a long time.
So, what are the possibilities? What could he tell us? There are a few possibilities. One being that there is no diagnosis because he doesn't have a 'syndrome'. This would of course be our highet wish, he has been developing well lately and it could be that he's just a little behind but will catch up as he grows.
Another possibility is an obscure syndrome that basically means he'll be a little behind in life and possibly have seizures and some health problems. This is kind if where we're at right now. And even with the possibility of seizures coming back, and some kidney problems and some delayed development, he is still a very happy child. He's always clapping with a big smile on his face. Often he wakes up, claps a few times, then goes back to sleep. I can handle a few health issues and delayed development if at least he's happy. His smile can melt the hardest heart and lights up the room like an atomic bomb.
Another possibility may be harder news, though given the circumstances, isn't too likely. Many syndromes don't have a long life expectancy. I mention this option, not because we think it will come to this, but just to help others know of the thoughts a family goes through when waiting this kind of news.
Probably the worst possibility would be no news. Inconclusive. Often times its better to at least know something, even if it's bad, than know nothing. Although in some ways, by not labeling him, you also aren't limiting him. Not even the sky is the limit if you don't have limits. So this possibility may very well be a blessing in itself.
Either way, and no matter the news, we are so grateful to have Easton in our family. Each of our kids is special, and brings something wonderful into our family. One part of me dies inside every time I think of Easton not being able to experience life like other children, but another part stands in awe at the majesty and power enveloped in that tiny spirit and I applaud along with him over the smallest, yet monumental feats.
And if, by some small chance the results are less than favorable in two days, I will have peace. For I know that through Christ I can do all things.
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