Thursday, January 24, 2013

My Favorite Diagnosis Thus Far

I sit at my computer staring into a blank screen, not sure where to start tonight. The thoughts in my head race around like the NASCAR races and usually I can keep up, unlike tonight. So I will start it off as a story, brace yourselves this may be a long one!
This week we had our ACH (Arkansas Children's Hospital) appointment to recheck Liam's eyes--just like ever 3 to 4 months--but this time was different. Since Liam's initial appointment as a 3 month old infant we have not had his eyes dilated again to recheck the coloring and inner workings of the back of his eyes....it's an easy proceedure but one they do not tend to do except for once a year. The last visit at 3 months (when we got our "legally blind or worse" diagnosis) did not tell us much since he was not quite old enough yet for his eyes to be anywhere close to fully developed.
This visit however we expected to have more of an idea of how Liam truly sees.
The doctor had already complete her normal tests--testing Liam's sight with the same flashcards we see each visit, and checking for lazy/drifting eyes--when she brought in a student she wanted to let examine Liam. (We consented of course because Liam is a rare find!)
The student and she started talking explaining what Liam's diagnosis was and that with albinism there is a different visual spectrum. Basicly she explained what we already knew: in kids with albinism when you look at the back of their eye, if you see very little to no pigment this means they will be further on the "blind" side of the spectrum, and if they have little to some pigment that means their chances for more sight greatly improve.
She told the student, "do you see how Liam passed all of our tests and has great control over his eye movements? He saw that there was a puppy on the tv(turned on silent) without us telling him and it is near 15 feet away....so we would expect to see fair to good pigmenting in the back of his eyes."
Then she turned off the lights and possitioned herself to examine the back of Liam's dilated eyes with her special scope.
After several repositionings, "hmmm"s, and a few "that's very strange" comments she finally turned the scope over to her student and ran though all her chart notes on Liam.
The student pointed out before I could ask that "I don't see any coloring in his -----insert medical term I have already forgotten here---- is that correct?"
Our doctor turned to us very baffled and said, " there is NO pigment in the back of his eyes, none.. I can follow the nerves and everything, it completely lacks in pigment...."
WHATS THAT MEAN!!! We baggered.
***Warning: Tissues needed here***
I will never forget our sweet doctors words for all my life, and I will never stop repeating them in stories for years to come to anyone who will listen....
"By all medical definitions and by every examination of his eye that we have seen... Your son should be completely blind. They all indicate that he would see almost NOTHING, yet seeing him here in front of my eyes and watching him...I know he sees something! It's like looking at someone else's chart, the medical tests do not line up with this patient..and yet...."
We all stared at Liam, she in shock and us with pride... proud that though at times we doubted, God did not. He has had a plan all along for our sweet boy. One we never could have dreamed of.
Our doctor checked Liam over, and told us just this..."it cannot medically be explained, sometimes these things just happen, and they are so rare I wish I saw this more often.."
But we know the answer as his parents because we have been praying over his small eyes since day one. We truly believe her medical tests were right, that our sweet boy was once born blind and that by no science of theirs but by our Gods healing hands Liam's eyes have been healed.
No his eyes are not perfect, the nystagmus and photophobia along with a few other things will still cause him to be legally blind, but this is more than we ever could have hoped for...after all medically his sight could have been completely taken but it is not.
Our boy is a rare case of this I know, we have friends who have in ways believed harder and longer that their child or children with albinism would have more sight than they do but the do not....we never understand the reasons behind how God moves and why...but it's not for us to questions either. We know that we are blessed MAJORLY and we know that Liam and a lot of kids like him are destined to do great things, with or without their visual impairments!

Just a few weeks ago with some friends of ours from out of town, we sat around playing silly games of hypithetical questions like:

 "If you could have any movie super power what would it be?"
"If you could live on a movie set which would you choose?"

And one of the questions was, "What moment in biblical time would you want to be able to witness if you could only have one moment?"
My answer came fast: I would want to be there when Jesus healed the blind man and gave him back his sight.
This week I realized....I already have.

 
"And immediately he regained his sight and followed Jesus, praising...."

Monday, January 21, 2013

My Liebster Award Post

This is my post to thank Jennifer Pletcher over at Mixed Nuts for awarding me this award!



The rules for the acceptance are:
1) Visit and thank the blogger who nominated you
2) Acknowledge that blogger on your blog and link back
3) Answer the 10 questions posed by the blogger who nominated you
4 ) Select 3 – 5 bloggers for the award
5) Pose 10 new questions to the new nominees
6) Post the award on your blog

So, thanks again to Jennifer and here are the answers to the questions she posted for me.

1. When you first got your child's diagnosis - what was your immediate reaction?
Well, I wrote all about when we first heard the words "we think your child may be blind," but I'm not sure we ever mentioned how we felt upon receiving the official Albinism diagnosis. When we heard the news it was the one thing we had instantly seen on the list of causes for Albinism and ruled out. I had seen kids with Albinism and thought Liam looked nothing like them, we also had no family history of it... So shocked doesn't even come close.

2. Why did you start blogging?
After the first hundred questions about "what does Liam see?" I was so tired of explaining it over and over again and friends getting upset that "they hadn't heard!" So the blog formed to keep everyone in the loop and connect with other families sharing our same stories.

3. What is the best thing you have learned since your child was diagnosed? 
When I was a child, the only thing I ever wanted to grow up and become was a mom....I remember telling my parents, "I think I could handle 5 or 6 kids of my own, as long as none of them were disabled...I could never handle a disabled child..." I hate that my childhood self ever said that but who really hasn't. The point is, I never thought I could handle the one situation we found ourselves in as parents...until I did. So I have learned to never double the strength God gives us to handle our present situation.

4. What are you proudest of?
The example my son sets for all those who said "he won't do this/that" that the blind/visually impaired/disabled are just as capable and strong as the rest of us.

5. Do you have any regrets? 
 Never. I wouldn't change a thing.

6. What would you say to a new parent that just was told their child was blind/going blind? Your child is the same child they were before you heard the news, nothing has changed that, sure you'll have a rough journey but every minute of it will be life changing and filled with love. They are still your amazing, extraordinary child you have know all along, you just have a new path, a new mission, a new view of their little life. Nothing yet everything has changed... Except your love for them and theirs for you.
Holland IS just as beautiful as Italy.

7. How do you balance family life and life with a child with special needs?
 I've found I can balance everything better when I have time to myself at least once a week to do whatever I need to do (write, relax, nap, etc.) and lots of calendars and communication of schedules.

8. On a down day - what is your favorite activity?
Writing.

9. What scares you the most? 
That even parents can't protect their children from EVERYTHING.

10. Do you have a favorite motto or saying?
 I just recently heard this and LOVED it.."sometimes God redeems you from something, and sometimes God redeems you through it."

Thank you Jennifer and here are my nominations !

1. Living With Nystagmus
This blog was the very first site I found with real human emotion behind it when we were researching what Nystagmus and Albinism meant for us. I learned so much from Claire and since then we have become great friends. I can always learn from her journey with her two sweet boys and she always keeps me laughing with her British slang. I love that her family though they are thousands of miles away and we have never met in person. They are AMAZING to say the least!

2. Sarah at Does This Blog Make Me Look Fat?
I have been friends with Sarah for several years now, watched her go from a single gal to married with a beautiful baby boy...She's so passionate about being his mommy and the struggles she went though to just become a mom are heart felt and beautiful seeing the end result. She keeps parenting real and keeps me laughing...and pictures of that cute little guy are worth every read!

3. Ashleigh at Happy Ashleigh
When I found Ashleigh I had just found out about Liam's eyes...We hit it off instantly thanks to our
mutual gal pal Claire. Doing this journey with her makes it so much easier and entertaining! Her two twerpies are so beautiful and I can always lean on her with questions of "have you ever.." and "did this happen with your kids?" when it comes to to our kid's eyes and their sight. She's such an amazing mom and blogger!

If you three ladies choose to participate please follow the above and here are your ten questions:

1.What is your favorite mom moment so far?
2.Why did you start blogging?
3. What would you say to new parents (Sarah) and to new parents of a special needs child (Claire, and Ashleigh)?
4. What is one thing you want your children to know incase you forget or are not around to tell them one day.
5. What did having a baby change the most for you and your lifestyle/plans for your life?
6.What are you most afraid of when it comes to parenting?
7.What is one thing you miss from your pre-children days?
8. What's the cutest thing your baby(s) do to take your breath away?
9.What's the grossest mess you have had to clean up in your house since becoming a parent?
10. What is one thing your child/children have taught YOU?

Happy Posting Ladies!!


Thursday, January 17, 2013

Update on Brian's Sight

I have been meaning to sit down and write this update on Brian's sight for a week now, but everytime I get more than 30 minutes to do so something always comes up-and lets face it, it's definitely going to take longer than 30 minutes in between nap times to cover this.
Anyway, so many people have been asking about Brian's sight, many of you are praying for him, emailing, texting and calling us to check in and we are so grateful. We are truly blessed in our family and friends. So here's the update....

We were able to get in-due to rescheduling after the snow storm on Christmas day-on a day or so before new years. When we got to the neurologist he did a very detailed exam of Brian's eyes and eye functions before insisting that the person who had read our MRI scan-and called it normal- was wrong. He explained that there are three categories in which late onset Nystagmus can begin in adults: the 20 years old or younger, the 40 and over, and then last the inbetween. He beat around the bush telling us the oldest and youngest first, before he finally got to Brian's age bracket.
"In this age group it is most always a brain tumor."
It was the longest pause of our lives!
He did not care to explain, he only raced away to "re-evaluate" Brian's MRI scan for himself.
We sat in that room for what felt like hours but it took only minutes for him to return.
Those minutes went like this:
We stared at one another in silence until Brian started repeating the doctor:
"It's ALWAYS a tumor.. ALWAYS a brain tumor...a T-U-M-O-R...."
"We've got this, it will be okay babe, HE has got this, HE HAS GOT THIS..." is all I could say but it was all it took to silence us both.
We prayed our little pea-picking hearts out with the minutes we had left before the doctor returned, a very upset doctor that he was WRONG. No tumor.
Insert giant SIGH of relief here!!
He looked Brian over again and assured us that this was not from his head injury, but he could find nothing obvious to point the blame.
So the good doctor told us basicly this: If it is being caused by anything minor (inflammation behind his eye, a hit to the head, a small bleed or bruise, a vitamin deficiency, etc) the Nystagmus would eventually slow down until it one day stops completely. If it was something more severe that would require more aggressive tests, the Nystagmus would not change. He explained that in many cases where a minor issue is the cause, the Nystagmus is gone within three months time. So he scheduled Brian for a recheck at the end of Feb. and at that time we will re-evaluate to determine if further testing is needed.

Obviously since it has taken me a few weeks to write this all down we have since seen some change in Brian's vision... Until this past week, Brian was seeing double at all times no matter what he did to try and fix it. Monday as we I was driving he noticed that when he is relaxed he is still seeing double but when he was squinting to look at the stop signs ahead of us he could pull everything into focus and only see ONE of everything up to 50 feet ahead of us. Since Monday the distance between the doubles of every object he sees has shortened. (Originally when he was looking at say a person infront of him, there would be two separate copies of that person....now when he looks a someone their two copies kinda overlap like they are pulling back together. Get it?)

With these new developments we know it is only matter of time before his vision hopefully comes full circle back to his normal sight range, we need only be patient. And we wanted to say thank you for everyone who has been continuing to pray for us and his vision, and for all the house calls, the phone calls, the help and offers to drive him around or bring us dinners so he wouldn't have to cook...you all are amazing!! Like I said we are so blessed.  Hopefully we will have more updates to come soon!
Amy