Rockin' his Elvis Hips!

Sorry, it's been a while. Development Update: Easton is right on the verge of crawling! He's in the right position and started to move his legs forward to move! So exciting! He's also started pulling himself up to our Orange Juice Table (it's not a Coffee Table in our house) and into the standing position. And once there, he sways his hips around like he's Elvis or something. We call them his Elvis Hips. The orthopedic doc at Shriners calls it Hip Displasia (who knows, maybe Elvis had Hip Displasia too?) He now has a brace that holds his legs at 110 degrees (almost the splits) while he sleeps so that the ball joint will develop right. We're told it may require surgery, but they'll wait till he is a little older so they don't stop his development with the body cast it will require. In the mean time they say he might develop an 'interesting gait', and he'll keep rockin the Elvis Hips!
The ankles are also rockin, so we've ordered some ankle braces to help train his feet to work right. Luckily he'll only need to wear those while doing therapy and working on standing.
His MRI came back (they were looking for Spina Bifida), and they found a small conglomeration near the cord, said it might be similar to a Tethered Cord, but it's not Spina Bifida and they don't think it will affect him much. The neurologist said his brain stuff seems to coincide with people with strong upper bodies, but who struggle with their lower. We're not sure what that means or entails entirely, but it seems to fit him for now. He is strong and well developed in his arms, and struggles with his legs. But that might be the same with all babies--they all seem to develop that way. So we'll see.
So now we wait for a week till he gets his renal exam again to see if his kidneys are draining properly, or if they will require surgery. Hopefully his Kidneys will be working perfectly so we won't have to operate. My heart aches when I see him recovering from surgery, and this one would be bigger than what he's had before.
By the time we're done with him, he'll be the bionic man!

Time Flies

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!

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!

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.

Pathetic to some, beautiful to me

It's probably pretty pathetic to watch a couple parents get misty-eyed and cheer for their 1 year old as he does something so simple as grab a toy. But to see the monumental struggle in his eyes and watch him skew his mouth in concentration as he actually shows interest in the toy, then balances out his depth perception and fights his disobedient motor skills to zero in on it--it fills my heart to breaking. With love, joy, and if I'm honest with myself, some anguish for this special child of God who has been given some challenges in life but struggles onward with smiles and laughs. We are so blessed.

So many people understand exactly how I feel. With ill children, disabled children, injured, deformed and "slow" children throughout the world. Each is a blessing to their families. No one signs up for it, but parents and siblings and neighbors the world over rejoice with each triumph over seemingly small, yet monumental battles. 

I can't help but feel that our Father in Heaven feels the same about each of us, as we battle with self-esteem, hate, envy, addiction or pride. I can just picture Him looking down on us with a tear in his eye and a huge smile on his face. 

That's the God I love and worship. A Father who rejoices with our triumphs and weeps at our sorrows. How truly blessed we are.

Easton is on a roll!

Yep, last week he started rolling from his tummy to his back.  This week he sat up for ten minutes on his own. He continues to make progress.  And then to top it all off, he had two kidney tests on Monday and drum roll please.........his kidney reflux has cleared up!  He does still seem to have a blockage because one kidney isn't draining as fast as it should, but he doesn't have to have surgery yet.  Not for the kidney at least, but he is going to have surgery on his manly parts in a few weeks.  Poor boy!
We again want to thank everyone for their thoughts and prayers.  We continue to see blessings everyday.

Alert! Major Rollover in the Family Room!

Yes, you read that right, Easton rolled over for his First Time yesterday!! Went from his back to his belly. He did it twice, once unsupervised--we just noticed he was suddenly on his belly, and once while mom watched.

Oh, the things people miss out on when they cram their kid's development into the 'normal' time frame. Most parents see sitting-up, rolling over, head-holding up and other things in such a short time. Lucky for us, Easton is stretching each level of development out, so we can enjoy it all the more. Bet you wish your kid was that considerate :)