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Tuesday, February 28, 2012

Like a referee with a whistle!

It's official, like a referee with a whistle!  Makayla and I will be heading to Ohio in just a month and a half, to see the very best doctor in, quite possibly, the world, for Nystagmus.

I had several conversations with our insurance company last week and they confirmed that all the services from Dr. Hertle, including the surgery (IF Dr. Hertle thinks surgery is the best treatment) will be covered under our plan.  Unfortunately, the travel expenses will not be reimbursed, but I knew that was probably too good to be true.

I notified Dr. Hertle's office right away, that our insurance gave us the thumbs up, and they called me yesterday to schedule her first appointment with Dr. Hertle.

She will meet the doctor on April 18th.

That's just barely a month and a half away!  That is half the time it took me to get in with ANY of our local specialists!

This visit will be four hours long and in addition to meeting with the doctor, will include several tests.  As I understand it, all of the following tests will be preformed in those four hours:

I'm excited beyond words.  I was nearly hyperventilating on the phone while making the appointment.  My tummy flips every time I think about how much getting Makayla this appointment means to me.


I have to admit, I'm a little worried about how well a 16 month old is going to tolerate so much testing.  I know that for me, as an adult, by the time I'm done at my regular optometrist's eye exam, I've looked through so many "one, one, or two" slides that I just start blurting out numbers to get it over with since everything looks the same at that point.

The reading material that Dr. Hertle's office sent me says to make sure that Makayla is well rested before the visit since it will be a long day for her, but since this will be her first time traveling, I'm concerned she won't get much sleep.

I'm worried how Makayla and Austin will do being separated for the first time.

I wonder how the heck I'm going to travel, by myself, with all that I will need to care for a child under two.

I'm so scared Dr. Hertle will say the surgery isn't for Makayla.

I'm scared to death he'll say she needs the surgery.

But mostly....

I'm excited to know as much about her Nystagmus as possible.

I'm hopeful that we'll finally get an answer as to what is causing her Nystagmus and why.

I'm hopeful that we'll find a treatment effective enough for her to live independently, and enable her drive some day.  And that it helps her enough that she needs no intervention in the classroom and that she's able to make friends easily.

Monday, February 27, 2012

And the award goes to...


You probably thought this was going to be something about all Oscars from last night.  But, I have no idea what movies or actors where up for awards, or who wore what.  I can't remember the last time I got to see a movie and last night I was too busy attending a good friend's baby shower followed by quality time with the fam while I snipped my coupons.

However, there was one award DID get my attention this weekend.  The very sweet Melissa, at MaMe Musings awarded my little ol' blog the Irresistibly Sweet Blog Award.  This is my very first award for...anything at all, actually!  I an I couldn't be more excited to accept it!

One of the conditions of accepting this award is that I have to share seven things about myself that my readers may not have known before, and then pass the award along to other blogs fulls of ooey-gooey sweetness.

And so, my acceptance speech:
8th Grade
  • I have seen every single episode of Golden Girls, and Mad About You.
  • For a brief moment of insanity, I had hot pink hair when I was in middle school.
  • Although, I didn't even like pizza, my first job was as a pizza maker at our local pizzeria.  During my short time there, I perfected the art of pizza and found a deep passionate love for all things doughy and melted cheese.
  • I have researched my family tree back to the 1200's.  Specifically to King Edward I of England, also knows as Longshanks.  What started out with a goal to simply right down as much information as my grandparents know in hopes of storing it for my kids and their kids, with a little research, it evolved into a full blown tangled tree with many branches.  My tree currently has 1,028 people in it.
  • Although I live, and always have, in California, I have an irrational fear of tornadoes.
Aubrey and me in 2nd or 3rd grade

  • I hoard friends.  Just like the guy on hoarders that had 257 cats.  I hoard friends.  Once in my life, I do my best to stay in contact forever.  Facebook was made for people like me.  Of my five best friends, the shortest friendship has been for seven years, and the longest will be 25 years this summer.
  • I'm clumsy.  Painfully clumsy.  I once broke my fall with my face right outside an IHOP window, for all the retirees to see.  I also do synchronized tripings with good friend while walking in too high of heels down the Vegas Strip.
And there you have it!  Seven things you never knew, that are hopefully mildly interesting!  And now, drum roll pleaseeee!  I would like to Award the following deliciously tasty blogs the Irresistibly Sweet Blog Award!

Thursday, February 23, 2012

No really, to Ohio!

Yesterday, I got a call back from Dr. Hertle's office regarding the inquiry I sent them for more information.

I talked to the friendliest, patient, most informative woman.  Knowing that she probably had very little time to actually hear what I needed to say, I blurted out Makayla's entire medical history and at least thirty questions in rapid fire fashion.  She very patiently listed to me as I sputtered our story.  Never interrupting or rushing me, only stopping me to ask extremely relevant questions.  What was truly shocking was how she spoke to me like a concerned mom, rather than a busy office assistant who has heard similar stories a thousand times and really needed to get to other clients.

By the time I was off the phone with her, Dr Hertle's assistant had emailed me six informative documents including information regarding the surgery, what to ask our insurance, and an outline of what the visits with Dr. Hertle would entail, and a link to the American Nystagmus Network for support and additional information.  She also sent me some paperwork to fill out for Makayla so they can get her in their system and schedule her first appointment with Dr. Hertle.

After speaking with our insurance company yesterday, who confirmed that Dr. Hertle is a covered doctor (wooohooooooooo), they said that since Dr. Hertle's care is so specific and specialized they may even be able to reimburse us for some or all of the travel expenses!  My fingers are crossed, but that sounds too good to be true!  They are currently looking into it for me and will be calling me back to confirm.

I quickly filled out all the paperwork and sent it back to his office along with a short summary of Makayla's medical history, and already this morning I got confirmation that they received the paperwork and it's been sent to their scheduling department who are supposed to contact me on Wednesday.  We are hoping that we'll get an appointment as early as May.

This appointment will be a chance to meet with the doctor, and have some unique testing done, like an Eye Movement Recording and an Electroretinography (ERG), just to name a few.  Based on the results of the exam and tests, the doctor will recommend the best treatment.

I am still really scared of putting Makayla through a surgery, and hope that the doctor tells us that she sees good enough that she won't need a surgery, or that her Nystagmus may improve over time.  However, I have read that if surgery is the best treatment, then the best age for the surgery is between 12 and 24 months.

I am so excited to have so much new information at our finger tips.  I feel a huge sense of relief to know that my little girl is going to be seen by a someone who knows as much as possible about her condition.  But I am sooo nervous about all that it entails too.

Lions, Tigers and a Baby Giraffe! Oh MY!

Someone forgot to tell the sun that it's February!  Yesterday it was 80 degrees!  So, we packed up the kiddos at took them to the Oakland Zoo to meet their new baby giraffe, Maggie!

There's Maggie!

Makayla shows daddy the chimps!

Austin watches the chimps eat lunch.

Austin gives Makayla a ride!

Unfortunately, we totally forgot to take our beautiful red Radio Flyer wagon with us, and instead had to push this cumbersome, squeaky, front and back stroller around....but eh, live and learn.  Not a mistake we'll make twice!

Tuesday, February 21, 2012

To Ohio!...?

Today, we had a visit from Makayla's Vision Therapist.  She and Makayla's Physical Therapist have been coming almost every week now since the twins were just four month old.  I really appreciate our visits with them.  They have given us so many tools and resources to help Makayla develop.  I don't think they know, but they have moved me to tears on more than one occasion by the progress they have helped Makayla make, and by giving me the confidence I need to be the best mom I can be to Makayla.  

Several months ago when we were waiting for Makayla's MRI results, I was doing lots of research on Nystagmus and connecting with a few other moms of children with Nystagmus to share information.  During my research, I found out about Dr. Hertle at the Children's Hospital in Akron Ohio, and several treatments and surgeries he is using to help children and adults with Nystagmus.  After getting in touch with some people through the American Nystagmus Network, I was able to talk to lots of people who have had his eye muscle surgery which is supposed to slow the eye movement.  Many of the patients notice little or no eye movement at all after surgery, except during times of stress or fatigue.  I have yet to read anything negative about his treatments. 

Here is a video about that surgery.  It's very difficult to watch, but I found listening to the sound without watching to be very informative. This video is from 2007, and based on what I've read and seen, the surgery and treatments have actually come a long way since this video was made.  Horizontal Tenotomy: A Treatment for Congenital Nystagmus

When I first brought up the surgery with Makayla's Vision and Physical Therapists, both of which work with many children, under three, with Nystagmus, they had not heard about Dr. Hertle or the surgeries.  But from talking to the Vision Therapist today, she seemed to be a lot more informed.  She said that she's been reading up on on the treatments lately, and I get the feeling that one of her other students may be getting ready to have the surgery.

Traveling to Ohio for what probably will be several appointments, would be a huge deal.  Would I travel alone with Makayla?  Would my husband be OK at home along with Austin knowing that his little girl is having a life changing surgery? Would I be able to handle that on my own?  Would all four of us travel to Ohio?  Could we afford that?  My questions never end.

I sent a request to Dr. Hertle's office today to see about getting more information and I reached out to some people through the American Nystagmus Network to get input.

This isn't about the surgery though.  I actually hope that she doesn't need the surgery.  This is about getting Makayla seen by a doctor who knows as much about her condition as possible.  I do like the Pediatric Opthemologist that she is currently seeing, but it is just obvious that her knowledge of Nystagmus is minimal, and that seems to be the case of most POs.

Monday, February 20, 2012

Wearisome Routine Blues

I've been in a bit of a funk lately. 

Nothing ever gets done.  I live in my PJ's.  The kids are bored.  The dog is antsy.  The laundry is never folded.

I thought staying home to be with my kids would give us more quality time and mean that we could rush out for some fun at the drop of a hat, having no clocks to answer to.  But, I'm noticing that I've allowed myself, and in turn, my whole house, to become prisoners of the kids nap schedule.

When the kids were little bitty babies, I would wait for nap time so I could shower and get dressed, and clean up the house.  As they nap less and less, and later in the day now, I'm finding that I'm not getting showered and dressed until they go down at noon, and that by the time I'm done, and have grabbed a bite to eat, they are up again.  So, if we make it out of the house, we aren't even getting started until they get up from nap, and have a snack, making it almost 3pm!

Even though I'm up at 5am, I'm noting doing anything productive or fun until 3 in the afternoon!

Today, this changes!

After sending the hubby off to work this morning, I locked the twerpies in their very safe, and very baby proofed, playroom while I hopped in the shower and got dressed.  To my surprise, I was able to finished getting ready and whip up their breakfast before the kids even protested.  After breakfast, we all bundled up and got out for a very nice morning walk, all before 9 am!

The kids are napping now, and I will try to get a few quite chores done, and we'll head out again this afternoon for a few errands.

It's only the first day, but I already feel better and hope this is a pattern we can stick to!

Don't forget to check out the RAK Week Follow Up at Love 2 Be Mom!

Friday, February 17, 2012

Did you know it's RAK Week?

What is the world is RAK, you ask...?

Well, hop on over to Love 2 Be Mom to find out and share your own RAK story!

Wednesday, February 15, 2012

The Latest on Makayla

SILLY little stinker!

Since I spent a good portion of time on the phone today with Lucile Packard Children's Hospital, where Makayla sees all her doctors for her Nystagmus, I thought this would be a good time to share everything we've learned in the months since my last post.

After Makayla's MRI, while we were still waiting for the results, we had a follow up appointment with her Pediatric Ophthalmologist.   We were in and out of that appointment in less than five minutes and the doctor said no more than, "looks no worse and no better, see you in six months!"  Before we even made it out of the parking lot, my husband and I decided Makayla needed a better doctor.  Since then, she's been seeing a PO at the same Lucile Packard, Stanford's Children's Hospital, the same place where she sees her Neurologist.  But, let me get back to the MRI for a minute...

The neurologist informed us that Makayla's MRI showed no signs of anything that would cause her Nystagmus, and said that her Nystagmus is most likely congenital.  They did tell us that there was some space that indicated possible delays, but it may just be due to her prematurity, it's something we'll just have to wait and see as she develops.  The good news is, that Makayla's Physical and Vision Therapists think she's doing great.  She has caught up with her peers now, and may even be exceeding if you adjust her age due to her prematurity!

Makayla's new PO has been wonderful, we've seen her twice now, and have another appointment coming up.  She feels strongly that there is no such thing as "Congenital Nystagmus," and is determined to find a cause.  I really appreciate that about her.  I'm so grateful to have a doctor that wants as much information as possible and won't just settle for, "I donno."  Since Makayla is so fair, she offered to refer us for genetic testing to see if there is albanisim, which commonly comes with Nystagmus, but said that the testing is often unreliable, plus, I'm quite fair myself, so it's likely she's just a mini me.  At our last appointment with her she asked that we have a Electroretinogram (ERG) done on Makayla to see if we can get anymore information about the way she sees.  We are currently waiting for that appointment to be scheduled, and unfortunately, Makayla will have to be sedated again...

That's the short of it, but I will share more as we continue to see doctors and have testing done!

Austin's First Haircut!

My little guy is really growing up! 


First snip!


And with a little style!

No cut for Makayla just yet, but she couldn't resist a spin in the Porsche!

Tuesday, February 14, 2012

Too busy to blog? I hope not.

The transition from infant to toddlerhood, times two, has proved to be all consuming, leaving little time for blogging...But, I hope that is about to change.

Makayla & Austin on their 1st birthday - December 2011

I recently watched Motherhood with Uma Thurman.  A movie I'd never heard of before stumbling upon it on HBO.  It's a really relatable story about a mom juggling her two kids, and although the joy her kids bring her is obvious and unwavering, the challenges that come with motherhood can be so stressful that we sometimes lose ourselves.  In the movie, Uma's character uses blogging to give her the "adult conversation" that stay-at-home moms miss so badly, and to fulfill her sense of self.

It really was a cute movie that had me saying, "oh my god, YES!  I'm not the only one?" all through out.  And it also made me miss my little blogging moments.  That's when I decided I want to revive this blog!

However, I recently (and I mean VERY recently) started a new blog (Love 2 Be Mom) with my good friend, and fellow mommy, Laura, of LauraGetsFit, on all things mommy.  Our goal is to share tips and ideas with moms about what makes us successful moms.  Happiness Is will remain a very personal blog where I will unapologetically brag about my beautiful babies, and share our story as me learn and navigate Makayla's Nystagmus.

I hope that you'll join Laura and I at Love2BeMom and continue to follow my family's story here!  I promise to write more regularly, if you promise to read, and occasionally comment.