Happiness Is Banner

Happiness Is Banner

Thursday, May 31, 2012

We Have A Date!

I received a very exciting call this morning from a bubbly woman at Dr. Hertle's office.  She was very excited to tell me that they would be able to schedule Makayla's surgery for August 2nd, which is a full month or two earlier than we expected!  I pretty much immediately burst into tears on the phone, but between fake coughs, lies about allergies, and asking the twerpies to settle down, I think I came off as a mostly sane, somewhat distracted mom of twins, rather than a hysterical mess.

Makyla's appointment will be very early in the morning.  We'll have to be in the hospital at 6:30 a.m., that's 3:30 a.m. for us Californians! Her procedure will only last for about an hour and a half; however, we'll need to stay for several days so that Dr. Hertle can see her after the surgery and make sure she is doing well before sending us home.  I'm actually relieved to be staying for a little over a week, because, from what I've read, the first three days, after the surgery, is excruciatingly painful, and I will feel better if she can sleep it off in our room at the Ronald McDonald House, rather than having to spend several hours flying.

Makayla's surgery will include a Bimedial Recession, Bilateral Inferior Recession and a Bilateral Superior Oblique Tenectomy.  All those fancy words basically mean that they are going to fix her stamismus, or "lazy eye" and move her null point.

Currently, Makayla's nystagmus is quietest in the lower field of her vision, so when she is trying hard to see something she often tilts her head back considerably and looks through the bottom of her eyes.  That is her "null point."  During her surgery, they will detach, and reattach her eye muscles in a way that her nystagmus is quietest in the center of her vision so that she no longer has to use a strange looking, and uncomfortable head position to utilize her best vision.  To the left is a picture of Makayla using her current null point to look at me while I take her picture.

Dr. Hertle told us that he expects this procedure to also slow the oscillation of her nystagmus.  However, he will see her again, six to seven months after her surgery, to measure her progress and determine if she will benefit from a second surgery to further dampen the oscillation of her nystagmus.  When we saw Dr. Hertle in April, he said that he thinks we will probably do the second surgery. 

Now the planing and preparation begins!  I'm glad that although her surgery is a lot earlier than we expected, it is still far enough out for us to make arrangements and plans!

Wednesday, May 30, 2012

Wordless Wednesday!

Another almost Wordless Wednesday.  I just can't help but give a little background when I share photos...

These are photos from the twerpies first trip to the beach, when they were eight months old.  Makayla was not a huge fan.  At the time, we didn't know about her OA and how bright it must have been for her.  Looking back at these photos, I also see how far she's come thanks to the help of her Physical Therapist.

Tuesday, May 29, 2012

"No one is ever truly ready for a baby."

You know the saying, "No one is ever truly ready for a baby."

That may be true, but as someone who was a very intentional parent (thanks to several years of infertility, due to my PCOS), I feel that I was as emotionally, intellectually and financially ready as one could be (of course, most of us could always stand to be more financially prepared, but we knew exactly how we would afford all the expenses that come with one little baby).  So when I stumbled upon an article titled You're So Not Almost Ready for a Baby, Even If You Think You Are, I had to have a read.   The author's Baby Squad Fitness Program rang so true that I was nearly in tears laughing as I read through it!  I particularly liked, "Socialize with friends in 18 second increments" and "Practice wresting a large, slippery fish three times a week."  As hard as I laughed, I still think I was fully prepared for my life to be dumped upside down and expected to not be reunited with my sanity or social life for one to two years. 

So, I started thinking, what things were I not prepared for?

I was not prepared for:
  • Twins!  We were warned that it was 30% possibility that we would have twins, but "no one is ever truly ready for twins!"  I joked that I hoped it was twins because, since it took me so long to get pregnant, I wasn't sure if I would ever get to do it again. 
  • Makayla's acid reflux and food allergies.  Maybe this was incredibly naive of me, but I thought acid reflux was something overweight, middle aged men got, not premature babies, and I never imagined that my own baby could be so allergic to my own breast milk.  Every single feeding for the first 7 months of Makayla's life was a totaly nightmare, until we finally found a dairy, corn and soy free formula (which cost $300 a month!) for her.
  • And her ocular albinism.
  • The ridiculous sap I would become.  I can't believe that after 18 months, I still just well up and burst into tears when I think of how lucky I am to have these crazy kids.  This is the very best age so far.  They are learning so much and are so excited by everything around them, because the whole world is still new to them.
  • The intense anxiety that came after I had the twins.  I joked that I had postpartum anxiety instead of depression, come to find out, it's actually very real!  I'm such a mellow and easy going person, and rarely even stress about the things that I should stress over, but in the months after I had Austin and Makayla I would have the craziest illogical thoughts about losing the babies and have intense, sweaty anxiety attacks.
  • My son work so diligently to destroy the house.  Sure, I've seen shitmykidsruined.com, or remember the story my parents told me over and over growing up and the time i put dark blue handprints all up and down the walls of our apartment in permanent marker, but I thought these were one offs. I didn't know that on a daily basis, my son would peel the molding off the walls, and tear up the hardwood floor pieces.  He's a two foot wrecking ball.
  • The odd, new shape my body would take.  After I stopped nursing, I was back to the weight I was before getting pregnant, but nothing fit right anymore.  Just when I had finally learned to love my curves, all of my lumps and bumps have shifted and taken up residence in new areas.
What were you not prepared for?

Saturday, May 26, 2012

My Week In Instagram!

Another week summed up in the instagram pics that capture my life!

This picture sums up my week best.  It feels like my whole week has been spent just trying my hardest to keep these kids from spiting their heads open. Running on the couch and taking occasional head dives to the hardwood floor and counting on me to catch them is a favorite.

This was my poor attempt at catching the solar eclipse.  Unfortunately, I did not have the forethought to make sure we have the proper viewing tools because this was the day of my best friend's baby shower.  All of the photos from the shower were taken with a real camera.

This was a really exciting part of our week for me.  Since learning that Makayla has ocular albinism, I now know so much more about the way she sees, and it's a lot more than, "her eyes shake."  Light plays such a significant role in her outdoor experiences.  For over a month now, I have been on the hunt for a the perfect pair of sunglasses, that she will keep on her head.  That's when I discovered BabyBanz.  Not only to they wrap around her head, but they provide 100% UV protection and are endorses by the National Organization of Albinism and Hypopigmentation (NOAH).  Thanks to a partner ship between BabyBanz and NOAH, I was sent a free pair for these wonderful sunglasses for Makayla!  These glasses are truly great!  I will be ordering a pair for Austin next!

We have been enjoying our backyard so much this summer.  I love that we can sit outside and the kids never seem to get bored.  They play with the dog, which makes his so happy.  We are outside, so they aren't breaking anything, which makes mommy SO happy!  This was a stick salad that Austin made Scout, and being the best big brother, he happily ate it while Austin watched and giggled.

Silly dog.  Nothing more to say really...

Last night was a rough night.  The kids had a terrible time going down, and by the end (or what I thought was the end) I was so stressed out that all I could think about was washing away all that stress with a pint of ice cream.  (Yes, I'm learning I am an emotional eater!) So, in keeping up with my Weight Watchers (By the way, I lost 6 pounds this week!) I steamed a pound of asparagus and proceeded to pig out!

Friday, May 25, 2012

Thank you!

This post is over due, but I need to thank you all so much for your votes, Facebook shares, and Twitter retweets!  Thanks to all of you, we received almost 600 votes, and came in 14th place out of 118 fabulous multiple-mommy bloggers!

Wednesday, May 23, 2012

(almost) Wordless Wednesday!

Good morning and Happy Wednesday!  Today is the last day to vote for Happiness Is in the Top 25 Moms of Multiples! We are currently in 14th, but I'm still holding out hope for a strong finish in the top 10!  Please just take a moment to visit Circle of Moms and vote for us!

And now for some Wordless Wednesday!

Saturday, May 19, 2012

My Week in Instagram

First, just a quick reminder that there are only 5 days left to vote for our blog in the Circle of Moms' Top 25 Moms of Multiples.  As of this evening, we were bumped down to the 14th spot, and I am still holding out hope that we might make it into the top 10!  Please remember that you can vote once every 24 hours until the voting closes on the 23rd, so vote each day, and tell your momma, and your daddy and your sisters and your brothers! and a great big thank you VERY much from me and the twerpies! 

And now, a short recap of our week in Instagram photos.  Yes, that's right.  Instagram.  I'm not sure how or when, but I got sucked into the Instagram craze. 

Just a few photos this week.  Bad Mommarazzi!

My favorite picture is one I've been trying to capture for a few weeks now.  Makayla has been playing peek-a-boo through her legs an a regular basis now, and it crack me up.  PRetty stinkin' cute, if you're asking for my unbiased opinion.

I also treated myself to some delicious artichokes from our local farmers market. They are Weight Watchers friendly, because they are zero points and take a long time to eat, plus, I LOVE THEM!

Then, there's my son eating his Very Hungry Caterpillar, which is how my children show affection to their stuffed animals.  I don't know where there learned that from...

I also was treated to a pedicure for Mother's Day.  It was delightful!  I haven't taken the time to do that since the twerpies were born, so that was really nice.

Each day when my husband gets home from work, the kids squeal and run up to him.  Here, they are soaking up all his love and attention as he reads them one of their favorite books.

While I was out today with my sister-in-law gathering last minute supplies for a baby shower (a baby shower for my best friend of 25 years, who is expecting her first baby in July!) that will be at my house tomorrow, we splurged on some Starbucks.  It was a bit pricy at 6 WW points, but I loved it, so it was 6 points well spent!

Friday, May 18, 2012

What We're Reading!

Earlier this week, the nice folks are New Year Publishing sent Makayla two books to satisfy her new love of reading. Paris Goes to San Francisco and Paris Goes to Lake Tahoe.  These are just two books in a series called My Friend Paris that are writen by a couple of young girls that started the series when they were just 10 years old.  These books are part of her travel series and follow Paris as she explores San Francisco and Lake Tahoe with her family.

If you have been following my What We're Reading! you know that one of the things I am always looking for in the books we choose is that the illustrations be easy for Makayla to see. These books are beautifully illustrated with bright bold colors that cover the whole page.  Makayla lit up as she pointed out all the new details on each page, pointing to the things she hasn't seen yet and asking, "That?!" waiting for me to tell her what each thing is.  I grew up and still do live near San Francisco, and this little girl has seen more of the city than I have!  As we read it, I thought to myself, we'll have to use all the destinations in this book as a checklist of places to take the twerpies to visit as they grow up here.

I am crazy about these books for several reasons.  Although these are not board books like we're used to, because they are written with school aged girls in mind, the pages are not just ordinary paper, so they don't tear easily, which makes them easy to share with my toddlers now, but will make them great books for them to grow into as they learn to read for themselves.  I also love that the author is a young girl, herself.  Reading these books to my daughter is a great way to teach her what young girls are capable of!  Also, since I have twins, I was excited to learn that the main character is a big sister to younger twin girls.

**Only 6 days left to vote for Happiness Is in the Top 25 Moms of Multiples blogs!  Please take a second to help us out and vote for us! Please and Thank you!

Thursday, May 17, 2012

Enough is enough!

I've written and rewritten the first sentences of this post more times that I can count.  I've considered discarding the post all together.

Why am I sharing this?  It makes me so uncomfortable.  It would be easier to delete all of this and keep my lips sealed, so that if I fail, no one knows.


Yesterday, I went downtown and joined Weight Watchers for the 3rd time.  The first time was so long ago, I hardly remember why I stopped.  I remember something about life getting crazy, working strange hours, and money being tight...I don't know.  I do remember it working and being successful on it though.

The second time was in the year before I got pregnant with my twins.  I joined with one of my closest friends on a mission to change our lives by taking charge of our health.  It's true what they say, doing it with a buddy is best.  We were both very successful and helped to cheer each other on.

I lost about 50 pounds.  I felt good.  I felt great!  I didn't realize how good I looked.  I was going to the gym at least four days a week, but normally five or six days a week.  I wasn't my thinnest, but I was in the best shape I had ever been in.  I had learned to like the gym. 

And then I got pregnant, with twins!  

I honestly didn't gain all that much.  I was so sick throughout my pregnancy that I had actually lost a lot of weight in the beginning.  And then, I learned that the only thing that didn't make me sick was ice cream.  Amazing, isn't it?  True story!  I ate so much Ben & Jerry's that my husband joked that the twins would be born ice cream dependent. (Disclaimer: This was said with nothing but love.  My husband has always been nothing but supportive of all my weight ups and downs and swears he sees nothing but beautiful when he looks at me.  Am I lucky, or what?)

In the end, I'd gained only 40 pounds, which is totally in the healthy range for twins.  And I swear, those 40 pounds fell off in a matter of weeks, thanks to nursing.


The nursing didn't last, thanks to two short stays in the hospital, due to a an unruly gall bladder.  And about the time I stopped nursing, I went on the Depo-Provera shot, which was a HUGE mistake.  See, I have PCOS.  Aside from the shot making me an absolute basket case, I have since learned that ladies with PCOS should probably never be on the depo shot because it is known for causing otherwise healthy and active women to gain 20 to 40 pounds.  One of the many lovely side effects of PCOS is that it makes it easy to gain weight, and hard to lose weight.  So, all of those factors, combined with caring for new born twins...I know, I know, excuses, excuses...


I'm now controlling my PCOS with medications, so all that's left to do, it take care of ME!  And, THAT is why, I went to Weight Watchers yesterday.  And now, here I am sharing this all with the world (ok, ok, just the few thousand folks that visit my blog each month)!  How is that for accountability?

**This is the last week to vote for Happiness Is in Circle of Moms' Top 25 Moms of Multiples blog list!  Please remember that you can vote daily through May 23rd!  Thank you! 

Wednesday, May 16, 2012

Wordless Wednesday!

November 2011
**Please vote for us at Circle of Moms' Top 25 Moms of Multiples!  We're down to the last week an could really use the votes to push us up to the top 10!  Thank you!

Tuesday, May 15, 2012

That's NOT food!

It looks like my "Eat or Starve" policy may be backfiring on me.

Recently, my oh-so-funny twerpies decided that feeding the dog is a lot more fun than feeding themselves.  They shriek at the top of their lungs and fling all of their meals onto the floor and wait for the always near by dog to race to the fallen food's rescue. Veggies first, followed by a major portion of their chicken or eggs, and even going so far as to toss their absolute favorite, bananas...splat, on to my now brownish-grey tile floors.

The fix seemed easy enough. We made sure the the dog was gone for all meals.  Not just behind the baby gate or in another room, out of the house all together.  Out of sight, out of mind, right? Um, nooo.  All their food continues to go right down to the floor.  This time it seems to be simply for their own entertainment.  A food flinging competition, if you will.  Egged on by each others squeals of delight.  Each one trying to one up the other.

I sternly scold them, only to be met with adorable, heart melting smirks and giggles.  Trying not to break under the cuteness, I turn to their father for reinforcements.  He puts on his best I-don't-think-this-is-at-all-freakin-hysterical face, and I think the kids are actually buying it.  His big booming voice actually startles them and they freeze in their tracks...for only a moment before they start cackling in unison and swipe their arms across their trays throwing every last bite of food onto my sad pathetic floor.

And that's when I came up with the Eat or Starve policy.  They can feed the dog, that's fine.  Scout is a big supporter of the policy.  The policy simply works like this.  I will feed them their normal serving sizes, they can eat it or toss it, but I will not give them more food, or feed them a snack, or feed them their next meal early.  The logic behind it is that if they feed their breakfast to Scout, they'll be that much hungrier for lunch and hopefully EAT!  Also, once they are big enough to hold a mop, they are my indentured servants and will make up for all the mopping I'm currently doing.

However, yesterday and today, I'm learning that I may only be punishing myself.  The kids have been painfully irritable, which I have to assume is because they are hungry...and today, while we were playing in the yard, between the two of them they tired to eat, rocks, tanbark, rocks, dry pasta, a pinecone, rocks, a broken baby gate and rocks....

So what's a mom to do?

**Voting for Circle of Moms' Top 25 Moms of Multiples closes in 9 days!  Please remember that you can vote for Happiness Is every day.  Your vote means the world to us.  Please and THANK YOU!

Friday, May 11, 2012

What We're Reading

After a two week hiatus, it's time to get back to sharing What We're Reading.

Over the past two weeks in which I didn't share our favorite books, Makayla has still been hung up on the Two is for Twins book that I shared last time.  I have to admit that it has grown on me.  I'm sure it has everything to do with how much Makayla loves to read it to us.

Austin has also really started to enjoy reading.  I've found him sitting down and reading books by him self a few times even. This kid doesn't sit still for anything, so it really warmed my heart the other day when I found him sitting against his stuffed frog chair and flipping through the pages of Five Little Monkeys Jumping on the Bed.  He was pointing at the pictures and mumbling something out loud, as if he were actually reading each page out loud.

However, this week, Makayla has a new favorite.  It's another one of the Baby Einstein books.  All I can say is, these Baby Einstein folks know what they're doing!  We are currently reading...and rereading...and reading, Baby Einstein: Language Nursery.  This isn't a book I would have picked out on my own, it was a hand-me-down.  It seems a little boring at first glance.  Simple, plain images, very few words, most not even in English.  But Baby Einstien gets it right , every time!

This book has a simple (but bold and easy to see for Makayla) image on one side of the page and on the opposite page there is a short sentence about the image and the sentence is written in about six different languages.  I have yet to actually ready the other languages to them, but the back of the book says that hearing the different languages is good for children during their language learning years.

On the last page, instead of an image, there is a mirror.  This is Makayla's favorite part.  She is always so excited and surprised to find herself in the book!  It cracks her up and she gets supper close to the mirror and kisses herself and giggles.  We have mirrors for the kids to play with, but there is something about having in it the book that makes it SO much more magical!

One of my favorite things about the book is that it's taught Makayla the work "duck."  Of course, now everything that isn't a dog or cat, is a duck...but she's learning!

Please remember that the voting for Circle of Moms' Top 25 Moms of Multiples blogs is still open!  And we sure would appreciate it if you would consider voting for us.  For the past week, we have been fighting for a spot in the top 10 on the list, but have been steadily hanging out in 11th!

Wednesday, May 9, 2012

(almost) Wordless Wednesday!

**Please help us make the Circle of Moms, Top 25 Moms of Multiples!  You can vote once a day, through May 23rd.  There is no signing up or unwanted spam, just one simple click and that's it!  THANK YOU!

Tuesday, May 8, 2012

Flash back: First three weeks of motherhood

So, do you happen to recall me mentioning something about our blog was nominated to be one of the Top 25 Moms of Multiples blogs at Circle of Moms?  I may have blurted it out a few times...maybe begged for a few votes?  Oh, you know what I'm talking about? 

I'm very excited that, as of this morning, we are on the top 25, and just five votes away from breaking into the top 10!  You can help me by voting once a day through May 20th.  A big hug and thank you to all of you that have been voting!

In honor of being nominated, I thought I'd share some of my favorite moments from my first weeks of being a mommy of multiples.

This picture on the left is me at 12 weeks pregnant, already in maternity pants for almost three weeks.

And the photo on the right is me at exactly 34 weeks, one day before labor was induced.  I'm not sure this qualifies and one of my favorite moments, but certainly a pivotal one at least.  We knew this day would come, but it's rare that you have the opportunity to recognize the very moment your life is about to change forever, or capture it with a photo! 

At this point, I had already been on maternity leave for about a month and a half.  I remember being very done at this point, but very much in the "nesting" phase.  I was still having morning sickness, and just walking from the bed to the couch was a huge challenge for me, but I still felt the need to push myself to clean the house an try to get everything ready for the little ones.  The morning after this picture was taken, after my weekly check up with my OB, I called my hubby and friends and told them that babies were quite happy in my tummy and wouldn't be coming anytime soon.  But later that day I had an ultrasound that revealed that Makayla had not grown over the last five weeks of my pregnancy so they sent me home to pack a bag, and was to go to the hospital that evening to be induced.  After explaining to his boss, "My wife isn't anywhere close to having these babies" and then a few hours later, "My wife is going into labor tonight!" Joey raced home from work and started building and putting together things like a crazy person!

Twenty an a half hours after heading to the hospital, our twins were born, just five minutes apart.  Little tiny things.  Makayla was born first, just 3 pounds 9 ounces and then Austin, just 4 pounds, 9 ounces, and were swept right off to the NICU.  I didn't actually get to meet my babies until a few hours latter when my epidural had worn off.

Finally, at 14 days old, the babies were finally off their feeding tubes, and IV's and I was able to hold them both at the same time.  This was a very emotional moment for me.  The journey to get pregnant had been a long and difficult one, and now two and a half long weeks in the NICU.  At this moment I finally knew my babies were healthy enough to be on their way home soon.  After all these years of working to make a family, by this coming Christmas, only a little more than a week away, we would all be together.  In our home.  My sweet little instant family.

Finally heading home!  16 days old, 14 days in the NICU!  Never in my life have I been so terrified to be driving a car.  Every pot hole and speed bump felt like my car tumbling off the Grand Canyon.  Every turn felt like a it might cause the babies to fly right out of their car seats!  To my surprise, we all survived the short trip home.

When they came home, they lived for the first few weeks in a pack and play in our living room (nights in our room with us).  Those first weeks home were a non stop cycle of, change, feed, pump, change, feed, pump, so there was little time for much else but to just stare at them and daydream about all the exciting things their futures will hold.  At this point, I thought I would be returning to work in just four short weeks, so I took every single spare second I had to touch them, smell them and kiss them.  I still do those things, but each of those kisses and nuzzles are all the more emotional when you think it will only last for four weeks!

Sunday, May 6, 2012

Ocular Albinism

First, if you like this blog (and if you're here reading, I assume you probably do?), would you take just a second and vote for us at Circle of Moms as one of the Top 25 Moms of Multiples blogs!  It would mean a whole lot to us!  It's just one click, you don't have to sign up for anything. You can vote once per every 24 hours, through May 20th.

Thank you, and thank you! Now, back to Ocular Albinism.

In the weeks since Makayla was diagnosed with Ocular Albinism (OA), I have been learning so much. 

In a previous post, I told you about a mom, Claire, that I had connected with from England whose son, Jack, is the same age as Makayla.  Our children are the same age we started talking shortly after Makayla nad Jack were diagnosed.  We connected over a desire to gather as much information as possible about Nystagmus and treatment, as well as the experience of being new moms.  We have continued to stay in touch and fill each other in on our unique journeys.  One of the things we learned early on was that there are very unique differences in the diagnosis and treatment of Nystagmus in the United States and England.  You can read about some of those differences on her blog, Living With Nystagmus

When Claire learned that Makayla had been diagnosed with OA, she helped me to connect with another mom, Amy, here in the US, whose son, Liam, has OA and is just a few months younger than Makayla and Jack.  Getting in touch and exchanging emails with Amy has been so helpful.  She is extremely positive and and optimistic and has shared so much useful information with me in the short time we have been exchanging emails. 

First I want to share a page from Amy's blog, Through the Eyes of Liam, where she explains OA.  The whole time I was reading it I was nodding and saying, "yes, yes!" because it explains Makayla so perfectly!  Had I read this blog a year ago, I could have taken it to Makayla's doctors and told THEM that she had OA.  Seeing all her symptoms laid out like this, the light sensitivity, the depth perception problems, the strabismus, it makes me a little frustrated that it took a year and a half, and going to Ohio to get an actual diagnosis.

"Ocular albinism is a genetic condition that primarily affects and is limited to the eyes. This condition reduces the pigmentation or coloring of the iris, which is the colored part of the eye, and the retina, which is the light-sensitive tissue at the back of the eye. It can be seen in people whose eyes are green brown or blue though most often the iris is a shade of blue. The iris can be completely or partially transparent or could have small holes in its pigmentation. Pigmentation in the eye is essential for normal vision as it is what filters the light coming into the eye. If the pigmentation has any holes, the patient has Ocular Albinism, meaning too much light is getting in through the holes and causing some vision loss and light sensitivity (photophobia) for the patient. If the pigmentation is transparent or there is no pigmentation to block out the light then complete blindness occurs.

Ocular albinism is characterized by severely impaired sharpness of vision (visual acuity) and problems with combining vision from both eyes to perceive depth (stereoscopic vision). The vision does not worsen over time but the vision loss is permanent. Other eye abnormalities associated with OA include rapid, involuntary eye movements (nystagmus); eyes that do not look in the same direction (strabismus); and increased sensitivity to light (photophobia). Many affected individuals also have abnormalities involving the optic nerves, which carry visual information from the eye to the brain.

Unlike some other forms of albinism, ocular albinism does not significantly affect the color of the skin and hair. People with this condition may have a somewhat lighter complexion than other members of their family, but these differences are usually minor. There is only one type of OA which has been genetically linked in male children as having been inherited from their mother who would carry the recessive gene for OA. If ever OA is found in female children then either OCA (Oculocutaneous Albinism, of which there are several types) is assumed or the gene must be carried by both mother and father.

Treatment of ocular albinism includes using visual aids and environmental changes to expand the limits of vision. Surgery for strabismus is sometimes helpful, but usually does not result in fine coordination of the eyes. Surgery can improve the field of vision if the eyes are crossed, and may improve appearance and the child's self image. Currently there is no cure for Ocular Albinism.

List of issues associated with the lack of pigment in the eyes:

• Reduced visual acuity from 20/60 to 20/400 and sometimes as good as 20/25 in African-Americans,

• Nystagmus - involuntary back-and-forth movement of the eyes,

• Strabismus - crossed eyes or "lazy" eye, and

• Sensitivity to bright light and glare.

Definition from the NOAH website:

”Ocular albinism in an inherited condition in which the eyes lack melanin pigment, while the skin and hair show normal or near-normal coloration.”

Definition from Wikipedia:

”Ocular albinism is a form of albinism which, in contrast to oculocutaneous albinism, presents primarily in the eyes.[1] There are multiple forms of ocular albinism, which are clinically similar.”"

Secondly, One of the things I found really interesting on her blog was this interesting video that was created by a woman with albinism to help describe how someone with OA might see.

Of course, there are many other things that may play a role in how someone with OA might see, like astigmatism and what not.  As I understand it, people with OA often have a very bad astigmatism which further impacts their vision.  From what we can tell, Makayla's near sighted vision seems very good, and the doctors have said that she has only a very slight astigmatism.  One doctor predicted she may see as good as 20/40 or 20/60 (for perspective, my bad eye is 20/40 and I can drive without corrected vision).  And Dr. Hertle described her transillumination as mild, so I'm hopeful that this video may demonstrate even more light interference than Makayla has.

Saturday, May 5, 2012

Our week in Pixlr!

Time for another week summed up in photos taken from my phone!  Since I didn't get to post last week, I'm sharing a few pictures from last week as well.

Last week we spent a lot of time outside.  And I think the only thing our dog likes more than being in the house with us, is being outside with us.  Look at Scout's big smile!

I took Austin to get his second haircut (finally!) last week, and here Makayla is playing very nicely while she wait for brother to get all spiffy. 

Austin was a little more weirded out by the hair cut this time.  He was still very good, but had sound serious looks for the strange lady that kept spraying his head with a water bottle.

With all the product that the hair lady put in his hair, nap time really make him look whacky! I think I liked this look better than the the way it was styled at the kids salon!

Last weekend, a good friend and I took the kids for a short drive to the Asparagus Festival.  We  enjoyed deep fried asparagus, Asparitas (asparagus margaritas!) and asparagus ice cream!  It was a bit warm, to stay too long, but we really enjoyed the day!

We took the kids to a park/zoo for younger kids.  Here, Makayla is meeting Mini Horse.  I used to go to this place when I was little, so it was really fun to get to take them, even thought they will have a lot more fun there in the next year or two!
 Just a mom and her daughter. <3

We took the twerpies on their first carousel ride!  This literally moved me to tears.  Carousel rides bring back such emotional memories for me about my childhood, so although the kids were not that excited about it, it was a dream come true moment for me. 

Once we got moving , Makayla lost it.  I think all the movement was probably a bit much, visually, for her.

My goofy boy.  Always playing with things the "wrong" way.  I got these tubs to sort and put away the kids toys in, but Austin likes to dump them out and play inside the tubs.

Makayla is sick AGAIN, so we've been taking it easy at home.  Joey blew bubbles for the twerpies and although I've tried bubbles with them before, they were CRAZY about them this time!

**Please also vote for Happiness Is at Circle of Moms to be in the Top 25 Moms of Multiples Blogs!