Sunday, November 24, 2013

Thank You Google

(Google)
A few nights ago, we were driving home late at night when I had to come from, LETS JUST SAY 60MPH, to a complete stop in the middle of the road to let a group of does cross the road.  The rapid stop (and the few moments of sitting still to make sure no other deer decided to play chicken with my car) alerted Liam that something was wrong, and he started asking those two year old questions--you know the ones like “why” and “where” and “but why!”

Liam: “Why you stop mom?”
Me: “Because there was something in the road Liam.”
Liam: “What is it mommie?”
Me: “It was a bunch of deer Liam.”
Liam with all the excitement he could muster: “WHAT!”
Me: “Deer, Liam.”
Liam: “Why mommie?”
Me: “They just wanted to cross the road.”
Liam: “Huh? What crossed the road mommie.”
 (Insert three more “huh”s here.)
Me: “It was deer Liam, just some deer.”
Then, after a few minutes of racking his little brain, “what is deer mommie?”


It hit me that Liam had never seen a deer and probably would not for a little while since-- let’s face it-- even in Arkansas we don’t take our toddlers hunting. There are also no deer on flashcards (though I don’t know why), no pet deer (at least not in our 15 mile radius), and to this day I have yet to see a stuffed teddy deer at the toy store.
So how to explain what a deer is to Liam.  While at the next stop light, I pulled out my iphone and googled “Deer”, punched “images” and handed Liam my cell phone.
Straight from Google search "deer".

My child went nuts!! The rest of the night he carried around my phone showing daddie and me, “Look it’s a deer! It’s a baby ‘cause it has spots!! Look at that one it has horns mommie, horns!! Ohh that’s a big deer! Look daddie, look at the horns!!!” He kept scrolling through the images of deer and doe and “baby deer” all night long.

All.Night.LONG.

 By the end of the night my phone was dead and Liam was dreaming of deer. He even chose to make reinDEER cookies the next night.
So thank you Google, because without you Liam may still be confused about what a deer is….and I’d still be stuck in the above conversation. J

Now I’m on the hunt for some deer products for Christmas—wish me luck! 

Friday, November 22, 2013

Sometimes We Forget

I know a lot of people always ask or comment on how living with a visually impaired/blind toddler must have changed our day to day life completely and don’t get me wrong-IT DID/HAS/WILL-but sometimes we still do forget.  I don’t know how or when it started but it did.  I know it’s because we have gotten used to the adjustments—the strips of tape on our steps, the white cane, the sunglasses, the every 3-6 month eye exams, the set-in-stone placement of our furniture, the movie nights with the couch moved up to three feet away from the TV, the vision therapy appointments, the enlarged picture books, the braille blocks and braille books, the giant flashcards and constant need to keep the floor and walkway clutter and toy free, and even the constant bruises and boo-boos from running into corners or walls or off step—but somehow we still manage to forget.

                When I scolded him for what I thought was protest and refusal to pick up his black raisins off the black part of our rug, all the while he was shouting “I can’t!” meaning “I can’t see them”—I’d forgotten.
                When we giggled and then cried when Liam tried to grab the last carrot from his Elmo bowl, but it was really Elmo’s orange nose on the bottom of the bowl—we’d forgotten.
                When we started reading books to him at night, and he had to get within an inch or two of his nose touching the page to see the pictures that were over 3 inches large—we’d forgotten.
                When we started counting blocks and Liam started to skip some of the ones that were too close together—we’d forgotten.
                When Liam told me someone was at our house (in our driveway) and I didn't believe him, though he heard them minutes before I did—I’d forgotten.
                When we were at the church fair and Liam hunkered low to the ground, almost on his belly, and began to sideways crawl to get under a wire fence that was more than 4 feet away, and he kept doing it pausing to see if he had made it under (when he hadn't) because he could not tell how far away the wire was—we all laughed and then sighed because we’d forgotten.


                Yes, some days it is so “normal” to live with Liam’s adjustments that we forget they are there, and we forget there will be more.  BUT this is our normal and normal sometimes makes you forget the hard parts that make life no so normal to the outside eyes. So new moms here don’t worry, sometimes you will forget too.  Some days the differences will stick out at you like a sore thumb, rubbing you raw on the inside, but other days are just plain normal….or whatever your normal turns out to be. 

Friday, September 6, 2013

Winners!

Our two winners were Renee and Manda! Thanks to all those who pinned, posted, and shared! Soon we may pair with Blue Lizard to do a mega sunscreen giveaway so if you didn't win don't give up! To the winners please email me your shipping address via the email listed on our contacts tab, and thanks so much for participating! 

Monday, September 2, 2013

Labor Day Giveaway!

I love four day weekends! Labor Day means a lot of our friends, family and our albinism family will be out at the lakes, the parks, and other fun sunny places having some fun in the sun for sure!  So this Labor Day, we decided to do not one but TWO giveaways!

One giveaway is a 5oz bottle of sunscreen, you guessed it, our personal favorite sunscreen—Blue Lizard! 

We are keeping it simple and easy to enter. All you have to do is share about the giveaway on one of your social medias—Facebook, Twitter, Instagram, Pinterest, your personal blog, etc.---then leave a comment in the comment section below. 
That’s it! 
So share and comment, then head over to amymeredithatkinson.blogspot.com to check out our second giveaway! Check back with us later this week for the winners!


Happy Labor Day All! 

Saturday, August 3, 2013

Albinism in the Workplace Series -part 1

I know this is long overdue, but I wanted to make sure we had a good line up for the Albinism in the Workplace Series that was full of several different career paths, and from people of all ages—and let me tell you, I got them. I have to admit though, that I did not expect some of the TRUTH in the submission answers (don’t worry; you will soon see what I mean). So after weeks of collecting more information back from the participants, and then some sick days, some website issues and such, I want to finally introduce our first interviewer!
Erica Evans is a new friend of mine that I recently had the pleasure of meeting at the NOAH Bowl-a-thon in Arkansas.  Since we live in Arkansas, I thought I would start off the series with Erica’s answers as she is the leader of NOAH’s Arkansas Chapter. I gave her a list of questions that I thought I would just list out for everyone to read her answers to. So I guess instead of an interview it’s more of a Q and A. (*Note-On a few I have added my comments that are in italics.) Enjoy!



Q: What do you do for a living?
A: I am a special education teacher at elementary level. *I should add that Erica also speaks on behalf of the visually impaired/blind at several events and conferences around Arkansas quite often, and that is just one of the volunteer things that she does around our community.

Q: What is the hardest part of your job as it pertains to your vision if any? Does your sight make anything more difficult in your line of work?
A: The hardest part of my job is grading papers and having to look over shoulders of students to read their computer screen.

Q: Was there ever a career you wanted to do as a child that you felt you wouldn't be able to do because of your sight?
A: I kind of wanted to be a nurse but my dad said I was too soft hearted to do that job. After that I never really thought about a career until high school and then I wanted to work with persons with disabilities and their families. *I think it’s important to point out that her parents did not discourage her from the nursing career because of her sight but because of other normal concerns that every child faces.

Q: Is there a career you tried but had difficulty with because of your vision?
A: No, I just fell over into the field of teaching after grad school.

Q: Do you consider yourself successful and what is your favorite part of your job?
A: I feel most successful and the most rewarding part is when I see kids make connections with the materials being taught and when I can see a child go from not being able to read to being able to read on a 4th grade reading level.

Q: Was there someone or something that helped motivate/encourage you to pursue your career?
A: I had a Disabled Student Services undergrad school tell me point blank that I worked better with people over computers. I had failed a computer information systems class and was feeling down. My first and only F in college—now that’s motivation!

Q: Do you use any assisted technology / devices in your workplace?
A: I use a hand held magnifier, I use my kindle to enlarge books so I can read them to my class, and I use screen magnification software, called Magic, which reads things out loud.  I also use a document camera to enlarge pages on a smart board in my classroom.

Q: What are your future career goals?
A: I love what I do and when/if I ever reach the point that I no longer love teaching it will be time for me to retire. I have been teaching for 18 years.

Q: What advice would you give to someone wanting to pursue a career like yours with a visual impairment?
A: It can be done. You have to find your way. You have to select books carefully that are large enough to read. Get along with coworkers and find people you can trust to assist you when needed.

Thanks Erica for your willingness to participate and answering all my questions; I am so thankful for teachers like you!


Monday, July 29, 2013

And We're Back!

Please forgive us for this past weeks technical difficulties, but now that we are back up an running here's the next few upcoming posts you can expect.

•Four or more on interviews for the Albinism in the Workplace Series 
•My review and thoughts on the new book-Golden Boy by Tara Sullivan 
•Two new therapy posts
•A list of great movies for the VI 
•Q/A for eye doctor visits as well as our recent update on Liam's eyes 
•Braille books/devices update
And a few random postings from my point of view. Get ready, they are coming! 
Thanks for being patient while the site was down this past week! 

Sunday, July 14, 2013

Turtle Shape Sorter

I've been organizing all of my interview notes for the series on Albinism in the workplace, but until then here's a new therapy toy to keep you busy.


I found another shape sorter that we just love! It’s called the "My Little Turtle Sorter" and we were blessed with it as a gift at Liam’s 2nd birthday party. The turtle has a bright green shell with bright orange shape pieces, so the contrast makes it much easier for Liam to see and find the correct spots for each piece.  When you open the turtles mouth the pieces can easily be shaken out to begin again. 
It is easier to find in stores than the original house shape sorter I posted about HERE, but both are great for toddlers. Give it a try if your working on learning shapes! 


Saturday, June 15, 2013

Beyond The Label | In The Workplace Series


As we sat watching TV this morning, Liam started naming the animals on his Saturday morning cartoon show. Brian and I began discussing how well he truly does see, and the conversation shifted to the people with albinism that we met at the NOAH conference last year and those on Facebook since then.
One thing Brian had never admitted to me until now was this:
"When I met the two lawyers who were in their early twenties, the teacher, the director with normal successful careers....that's when I finally knew: he is going to do just fine. That was when I could finally...relax a little."
He explained that for most dads it's more about the future, how it will affect their dreams, goals, careers, and success in "our world". Our world doesn't always come "disabled friendly" or "blind friendly". It's harsh, but it's true. Meeting these individuals showed Brian that his son could do almost anything he wanted, his vision not holding him back from a successful career. Dads are natural providers, and they want their sons to be independent providers as well one day. Meetings so many business professionals helped him to relax and realize that people with albinism are just like the rest of us- they just may have to work a little harder at it.
The conversation got me thinking- newly diagnosed families need to hear these success stories.
Dads NEED to hear these success stories.
Now, we know that success is not measured by your job. Many disabilities keep people from working yet they have full and happy, successful lives. But as the parent of a special needs child, knowing that your visually impaired kid has a shot at holding a regular job one day helps with the coping when it comes to the parenting part.
So we wanted to do a few interview posts of some of these business professionals during the next several weeks. We hope to show the new families of young children with albinism that when it comes to their child's education and adult career life, they can (like Brian) just "relax a little".
Like always, if you have any particular questions you want answered email them to me and we will see what we can do. I have a few individuals lined up for the next few weeks, but volunteers are welcome! We will call it the" Beyond The Label | In The Workplace" Series, and I cannot wait to begin!

Friday, June 14, 2013

To See The World In Color-Colorblind

Since Liam was little, we have wondered if he would also be colorblind. We had heard early on that it was a possibility but then again we were also told he was almost completely blind too. So from the time he turned 1 year old, we have been pushing colors at him and help with this from his vision therapists. They assured us as he got older (closer to 2 years old) we would know more- basicly the "hurry up and wait" game again.
We started with practicing "grouping" putting like color toys in piles all across our living room floor and challanging him to match another toy with the correct color pile. We did colored paints, colored shape sorters, and basicly anything else we could get our hands on. After all, mom is a painter who lives in a colortastic world ever day, making her more determined than most on the subject.
We were having no luck and since Liam had finally turned 2 years old in May, we were seeking to have him colorblind tested sometime this summer. ( *By testing I mean using the little green/red cards to see if he could see the shapes inside the hidden pictures. Since we now know our shapes, we thought this would finally give us a little more knowledge on where he stands with colors and you can actually purchase these cards online too if need be. Luckily, our therapist was planning to bring the cards and other test objects with her so we did not buy any of our own.)
The week before we planned on addressing this in his therapy session the below video took place. We were cooking in the kitchen when Liam drug in one of his tracer toys and began to name colors.
He pointed to a green bead and said, "Momma, esta (it's) buuu (blue)!"
My response was, "No Liam, that's not blue it's..." 
"Geeennn!!" he shouted.
He was right. It was green, and I was shocked. Probably just a fluke I decided, so I sat down to test him. The video is what happened next with no help what so ever! It started with three colors then by the end of the night he knew all five bead colors on his tracer toy.
We were shocked.
Testing cancelled. He obviously had decided he would name colors when he felt ready and now was finally that time.
So if your like me and begin to panic when your already struggling visually impaired child calls everything purple, have hope. It may be too soon, or it may actually be colorblindness. Either way, let the child find his own way about it, and just know that no matter the outcome they will manage just fine.

Tuesday, April 9, 2013

A Vision Therapy Success

In case anyone out there was wondering if vision therapy was worth it-I want to share a small success story with you. Not a large one like we have had in the past, just a small one...one that is still significant because we celebrate every victory.

This picture is from a vision therapy session with Liam at 11 months old. The next from today at 21 months.
 



You can't tell from Liam's face in the first picture, but he is terrified and crying. Our therapist, Lisa, worked for months with him on just being able to swing. We all assumed that the bounce in Liam's eyes made him feel unsafe and nervous when the swing was in opposite motion, especially if he could not control it.

Today, all of a sudden he was racing for the swings at the park, and would not stop once we began to swing. I never thought a small thing like swinging would bring me to tears. Somehow the thought of your child growing up hating a swing set because of his disability is just heartbreaking, no matter how small it is in comparison to other things. I never thought I would be so excited that Liam would sit in a swing and swing! But you should have heard me cheering!

So even if vision therapy had never taught Liam anything else (WHICH IF YOU FOLLOW OUR VISION THERAPY CATEGORY YOU WILL SEE IT HAS HELPED ASTRONOMICALLY!!!) it helped him love to swing...and that small victory is huge.
.

Friday, April 5, 2013

Vision Therapy Update-Age 18-22 Months

 

I thought I would try and combine the past two therapy visits with Arkansas School for the Blind into one long therapy post. (Mostly because I forgot to post one until the other happened but either way, you get two in one.) Sorry for the poor quality photos, I try to snap them quick so Liam doesn't get too distracted! So here goes:

The areas worked on were:

Shapes- still the basic three shapes, trying to learn to match and be able to identify each by name. The first session they used high contrast puzzle pieces that could be rearranged so that Liam did not memorize what order the shapes went in. The second session she used plexiglass shapes on a piece of paper that he had to hand to her when she held up her matching piece.


Problem solving skills- how to open things to get what is inside after seeing it done once or twice. For this Ms. Pam used a musical toy in a shoe box that Liam had to figure out where the sound came from, and how to get the toy back out. She also used a ring box (one like you get when you buy jewelry that would fold or split open when pulled on either end) in which she placed a small cereal snack for Liam to try to open and retrieve.

Identifying the purpose of everyday items- for this three items were placed in front of Liam- a hairbrush, a toothbrush, and a spoon- then he was asked "which one do you use to brush your teeth?" He would have to pick out the toothbrush and give it to Ms. Pam. Then so on with each item.

Picking up an item while holding something constantly in the opposite hand- Ms. Pam used a sandbox bucket with a handle on it and a bunch of lego type blocks scattered all across our living room floor to do this test. She had him hold the bucket in one hand and use the other to pick up each block and drop them in the bucket. Liam constantly wanted to set the bucket down and bring the blocks to it with both hands, we are still working on this task.

The Big, Little Game- Liam seemed to really like this game. The idea was simple, learn to tell which is bigger and which is smaller and be able to tell a difference in the two sizes. Ms. Pam displayed in front of him several toys, each with identical smaller versions. She asked him to find the big duck, then the small duck, and so on with each toy. When he could not successfully do this she tried removing all but two identical items and asked him to pick out the bigger one, then the smaller one.


Identifying three or more body parts-- for this they used the Fisher Price Puppy Dog that speaks the body part when touched and has fun songs about them as well. Since we have this toy at home Liam knew all of his body parts!

Some other small things that they worked on were: pull apart snap beads, grasp two objects in one hand, manipulate pages of a book/show interest in books, recognize self and family members in photos.

They used the Ipad for several Apps, training on many different elements, that I plan on listing out in my next post with cost and a short review.


All and all Liam is doing great and based on our recent evaluation with Ms. Pam, the vision therapy has greatly increased his skill levels in the areas of gross motor, fine motor, self help, cognitive, visual, compensatory, and social skills. We could not be more pleased with his improvements since his first visit a year ago! Though his lowest score was still in the use of vision category, we know he will continue to show improvements with the therapy!
We know it's success is different for each individual but we encourage everyone with VI kids to give it a try......which is why we are putting together a free therapy kit for a upcoming giveaway! We cannot wait to do this giveaway, but are still a few weeks out before everything is collected, so keep checking back with us if you wish to participate!
To check out our previous vision therapy sessions CLICK HERE.

Thursday, March 14, 2013

Braille blocks

We have been making and selling Braille blocks for home decor! Any words in any colors! Both blogs (throughliamseyes.com and amymeredithatkinson.blogspot.com ) will both be posting new ones as we craft more and more! For purchasing please visit Amy's Etsy shop at http://www.etsy.com/shop/amymeredith

And remember: all proceeds go to charities for kids with albinism!









Thursday, March 7, 2013

Tactile Learning with Braille Blocks

We have taken to **attempting** to teach Liam Braille recently, I emphasize "attempting" because this is a huge learning curve for us as parents. If you thought reading and writing were hard try conquering Braille yourself and see what happens. It's taken me nearly 6 months to learn it and I still sometimes confuse my "d" with my "f" and my "h" with a "j". My friend Leah has taken to playing Braille Hang Man rounds with me a work, which has helped, but that won't help a toddler.... Neither will the flash cards or Braille books at this stage. So it took awhile to find, but when I found Braille Blocks I knew, they would be perfect! What toddler doesn't want to stack wooden blocks just to knock them down and rebuild them back up again! And what do you have to do in order to do that??? Why, you have to touch the blocks, TOUCH the blocks. All fingers wrapped around the sides of each block, stacking and manipulating each one. So Braille on blocks sounded perfect, a perfect starting point to begin teaching Liam this great new language! Not many companies make them, but my favorite of those that I found were these organic, hand-made blocks from Little Sapling Toys. (I've added their logo to my side bar to navigate to their site!) Little Sapling has a wide variety of wooden toys, rattles, teethers, blocks and more! Most all of which can be personalized with your child's name! They are simply amazing!
So wish us luck, we've only just begun!!



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