Back on Track!

In reading our last few posts, it seems we only post when things are difficult. Well, this isn't one of those posts. 

Just wanted to report that things are going great. He has recovered almost completely, and he is back to walking! Everyday he walks 10-15 steps at a time and is getting better every day as he discovers the freedom it gives him.

We love to see his happy face as he claps after walking! Such a happy kid :)

Cheers and Concerns

I want to apologize for the tone of this post right now. Usually I try to post upbeat, silly and positive messages and updates. But I can't help being human too, and feeling a little mixed emotions. 

Today was great! Easton took over 20 steps without falling! It was amazing! Then, just to prove it wasn't just a fluke, he took another walk of 12 steps, then 14! It has been such a great day for him.

But tomorrow he'll go back under the knife for another surgery. His kidneys still are not draining properly, so the docs will open him up and see what is wrong. 

While I'm grateful for modern medicine and the amazing things doctors can do and find out and fix, it is so hard to hand him over to the doctor and see the look of abandonment on his face as the doctor takes him away for another surgery. Then knowing that he may lose the great advances he has made in walking for awhile as his body recovers and tries to remember how to work right.

It is all for his good. He needs the surgery, the doctors say. And he'll bounce back and probably develop quicker as his body functions better. All these are great arguments, and true. But in the end I'm just a dad, handing his scared little son over to a stranger who will take him to a strange place and hurt him with needles, make his mind fuzzy and leave him aching, not knowing what happened to him and why his father abandoned him.

And yet, is that any different from a Heavenly Father who knows exactly how a son or daughter will suffer in mortality, yet still He sends His children to a strange place, where they will be hurt, confused and aching with desire to return home? He knows it is for our good that we experience this test. He loves us enough to allow us to be hurt, and suffer, knowing it will help us develop and become who we are supposed to be. 

Yet I can't help but wonder if He, too, shed a tear or two as He watched a doctor take us from a place of safety, by His side, to a dark and dreary world. I'm certain there were tears of joy as well, knowing that we too would develop more quickly and function better with our mortal bodies than we were able to as only spirits. He, too, shed tears.

I'm convinced that we are given mini experiences in this life so we can, in a small way, understand how He feels. That He truly is our Father.

Cheers and Concerns? Yes. And maybe a little Understanding of a Heavenly Father's love.

A surgery of discovery

So, the docs say Easton's kidneys are still draining too slow. . . . And they don't know why. We wonder if it just means there is a blockage in the bladder that is still affecting both kidneys, but they don't know.

So next week he'll have a surgery of discovery with the hope of finding out what is going wrong and hopefully fixing it.

That's the hope

A Fast and a Smile

We believe in the Law of the Fast, wherein we go without food or water for two meals, and dedicate that time to prayer, contemplation and seeking blessings for us or others in need. As a church, we fast one Sunday a month, and individually we might fast whenever we feel we are in need of further guidance or blessings. 

On one particular Fast Sunday, little Easton, who had walked all over with his walker or with assistance, suddenly stood without assistance, then took four steps by himself for the first time. All the family cheered and clapped, bringing a huge smile to Easton's face. But the biggest smile was on Colby, my first son's face. With a gleam in his eye, he said, "That's what I was fasting for!"

How grateful I am that God answers the sweet prayers of children.

Expect Miracles: the Followup MRI

When I went in my mission, a speaker in the MTC told us that the work we were doing was God's work and that we should "Expect Miracles" on our missions. Through experience I gained testimony to this fact.

 I've also come to learn that Parenting is God's work too, and that as we exercise faith, and acknowledge God's hand in all things, we can expect miracles in parenting as well.

Our most recent miracle came through an MRI Easton had to follow up on an earlier MRI about 18 months ago. Back then he was having "Infantile Spasms", which are basically a kind of seizure, and through their tests they found that his brain had problems. One was that the nerves weren't as myelinated as they should have been at that point. Though they hoped it was just a little behind, and would catch up eventually. The bigger concern was that there were two nerve clusters where they should have spread out. Our brains start with all the nerves bundled close to the middle, then they branch out and spread out throughout the brain. He had two bunches that had never spread out. They told us that by this time they should be done migrating, and that they would probably stay that way the rest of his life, with uncertain effects to his thinking and movements.

Well, 18 months later the MRI shows that not only are his nerves myelinating, but the nerve clusters have spread out and are no longer a concern. Their explanation is that the earlier MRI was a little fuzzy due to his young age, and that the nerve clusters may not have been there in the first place. Our explanation, we thank our Heavenly Father for His tender care. 

They also changed their opinion on the infantile spasms. Originally they said the seizures would come back at some point in his life. Now they say they don't expect he'll ever have problems with them again. He's still a little behind developmentally, but is doing well.

Miracles don't always come the way we want them to, or when we want them, but as we learn to recognize them and thank our Father for event he small ones, we'll be amazed at how much God blesses our lives. Especially in this, our most important calling, of Parent.

The Power of Home

Amazing. Just amazing.
Easton spent 4 days in the hospital (2 more than he was supposed to thanks to a nicked colon), and moaned and whined whenever it was time to get another pain medication. He was in such pain that he just laid in bed all day and barely moved.
Then we brought him home, set him down, and off he went, crawling and climbing over everything like he never had surgery. That's the power of home. A home filled with love brings peace to the heart and healing to the soul. It gives hope. It's a familiar reassurance that loved ones are near and all will be well.
Indeed, as the hymn says, "All the world is filled with love, when there's love at home."

Wow! You're kidneys are beautiful!

Said no one. And yet, we just paid for a cosmetic surgery to fix how Easton's Kidney looks. Crazy? Probably. But then again, we're parents. We're supposed to be a little crazy.
In truth, however, the surgery was less for how the kidney looks, and more about how it is shaped, and thus functions. He's just now waking from a 4 hour surgery to remove the blockage in his ureter that's stopping the kidney from draining properly. Because of the stoppage, the kidney ballooned out and was deformed, needing some reshaping.
During the process they accidentally nicked the colon, but fixed that and hopefully avoided any infection.Don't worry,  It just required a stitch or two. He's not a semi-colon now or anything :) unfortunately since they nicked the colon we need to wait till he has a bowell movement or passes gas before he can eat. We're told that could take anywhere between a few hours to a week. I guess whenever your intestines are even touched, they go into sleep mode and take a while to wake up. It is helpful to get up and move around, but he'll be somewhat limited in what he can do as he heals.
They also were able to find the hiding, right teste and, wonder of wonders, it was still alive and they were able to pull it into place.
Overall, things seem to be going well. So grateful.

Bundle of hyper joy

We're a little late in posting this, but wanted to share it anyway. Last month we took the family to spend a week camping on the beach. Every time Easton saw the waves he would reach out as far as he could, then flap his arms up and down excitedly and clap as loud as he can. What a joy it was to see such excitement and joy in such a little package! I loved taking him down to see the waves, something about it just invigorated him, and seeing his reaction lifted our hearts as well.
What a blessing children are to us old geezers. :)

Finally crawling & getting surgery too

Easton started crawling this week. Yay!  He's still a little behind in his development, but he is catching up!  His crawling is a little disjointed, probably because of his hip dysplasia, but having him wear his hip brace at night is working wonders.
On the flip side, he had a kidney scan this week.  His left kidney is doing great, and they both are functioning well, but his right kidney is draining less than it used to (which wasn't very much to begin with).  The Dr. wants to do surgery to remove a section of his ureter tube (which may have a blockage) & reshape his kidney.  He should be in the hospital for about 2 days.  The Dr. said Easton would have a tube coming out of his kidney which would drain into his diaper for 10-12 days until his body heals from the surgery.  We wonder how that will affect his crawling.  Who knows.  An interesting side note - we realized all his issues seem to be affecting mostly his right side - right kidney, right teste, & right hip.  We don't if that means anything.  He likes to "Choose the Right"  that's for sure.
Thanks again for all your thoughts & prayers!

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 :)

Good Waves = Good News

We got the results back from Easton's EEG last week. The purpose was to check his brain waves to see if he still had the Hypsarrhythmia or any other abnormal, seizure causing, naughty waves. Results? (drum roll please) Easton has great looking waves!!! (which is more than I can say about those beauty queens in the parade--who taught them how to wave anyway?) 

They're starting to wean him off his anti-seizure meds now, and if we don't notice any seizures, they'll do another EEG in 6 months to check his wave status. 

Development update: Just today, Easton started semi-attempting to clap his hands. It's pretty awkward, and he doesn't open his hands to do it, but he smiles. It melts our hearts.

Have you checked out Apple's new iDoc?

Er, um, actually, that's supposed to by an Eye Doctor, not an iDoc. Slight misunderstanding, sorry.

But, anyway, in an effort to keep up on our goal to visit every specialist possible, we've got an appointment with an Eye Specialist for Easton. The Early Intervention lady has some concerns about how he'll track objects (with his eyes) to the left, but not the right. Plus he often won't look at me (dad), in fact he'll go out of his way to look the other way--even if I move to get back into his view (it's a little game we play :). The people say it's because he gets overstimulated by my ugliness, and can only handle the sight of me for short periods of time . . . or something like that.

Anyway, EEG this week, then he'll try out the iDoc next week. He's making lots of new friends. (do everyone's kids have this expensive of friends?)

Things are looking up!

Things are looking up!  We took Easton to the Nephrologist (kidney doc), for high blood pressure.  They ran all sorts of tests and couldn't find out why it was high. They put him on meds, & told us we had to get it checked every week at the Pediatrician.  His blood pressure dropped back to normal within a couple of weeks & now they say he should soon be able to get rid of the blood pressure meds.  Yay!
Also, I took him to the neurologist this week and the doc says Easton is doing well.  I haven't noticed any seizures for almost 2 months.  He has another EEG scheduled.  If Easton's brain waves are normal they said he could get off the seizure meds,  if abnormal he'll be on them for another 6 months, and then do another EEG.  We feel so blessed.  Thank you for all of your thoughts & prayers
Interesting tidbit - every doctor we've been to asks us if Easton was born early (he was born a week late).  So many things coincide with a premee baby, even the high blood pressure thing.  So, whatever syndrome he may have, it seems to have slowed down his development while in the womb.

Early Intervention

A couple of weeks ago 2 ladies came from Early Intervention to assess Easton's development.  They said his developmental level is at 2 months old.  So I've been carrying around a 19 pound 2 month old!  It's no wonder I feel like my muscles can't keep up with this kid.  He is a big boy, plus much more floppy than a 7 month old should be, and he doesn't hold his weight like he should at this point.  As a result, we have gotten to enjoy his baby stage for a lot longer than most people.  Especially when medications or sickness, like his recent croup, slow down his development.
Because of his lack of development, it feels like everyday is a celebration.  We notice the smallest improvements. He finally has been smiling more, laughing, cooing, getting excited and trying to reach for toys. He tries to hold up his head while lying on his belly and he can last a few seconds.  Then just today he started pulling his legs up in the air while lying on his back and turning to the side like he is trying to roll over.  I know, sounds simple, but just the act of pulling up his legs and trying to touch his toes with his hands is a huge accomplishment, especially when he usually just lays there like a puddle.  He gets to hear the whole family clap & cheer in excitement every time he lifts his head or his legs.
Excited Mom!