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.

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!

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

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! 

Before!

First snip!

After!

And with a little style!

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

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.

Heya Stranger!

Well hello, Blog!  Long time, no post!

Goodness, has it really been nearly two months since a post?  Well, let's catch up!

The twins are seven months old now, and more fun than ever.  Although they keep me very busy and practically don't nap at all, they are turning into very cool little people!  Giggles galore!  Makayla loves her jumper and looks like she might be auditioning for Riverdance when she plays in it.  Austin is scooting all over the place!  It wont be long before I'm constantly chasing after the two of them.  I am also now laughing at how much we tried to protect them from germs in the beginning, since now, everything goes directly into their mouth!

Seven Months Old

We took Makayla to Stanford's Children's Hospital on Wednesday for her MRI.  The purpose of the MRI was to rule out any neurological conditions or more serious factors that may be causing her Nystagmus, such as a seizure condition or a brain tumor.  She was so brave, and did so well.  Even though she was unable to have anything to eat after 5:30 a.m. that morning (since she is so young they had to knock her out for the procedure), she was all giggles and smiles and dancing for the nurses when we got there for her 12:00 p.m. appointment. 

It was really hard watching them put her under, and combined with all the hospital smells, which reminded me of the NICU, I was very emotional. I am very thankful that we have a very amazing friend, Aubrey, who was willing to stay with Austin all day, so that Joey and I could both be with Makayla, and there for each other on this emotional day.  She even cleaned my house while we were at the hospital!

Unfortunately, we will not get the results until August 23rd.

Makayla the morning of her MRI

Thanks to a referral form the Blind Babies foundation, we also have a Vision Specialist and a Physical Therapist, from the school district, coming to visit Makayla (and Austin) once a week.  They have been coming to see her for a little over a month now and are thrilled with the progress she is making physically, and we are learning a lot about Makayla's vision, and the best ways to help her see.  The vision specialist has noted that her Nystagmus has mellowed a bit over the last month, and predicts that we will see much more over the first two years of Makayla's life.  


I've also recently started up a friendship with another mom, Claire, thanks to the Nystagmus Blog.  Her son, Jack, is about the same age as Makayla and Austin, and also has Nystagmus.  She is from the UK, and we chat about being new moms and what Nystagmus means for our children.  Although we are both very busy and have a hard time keeping up with our emails, she has been a great support system for me.

As for my couponing shenanigans?  I'm still at it, and am now really finding my groove.  My poor husband has been such a good sport.  The poor guy, I have switch up his coffee, his body wash, deodorant, and the meals I prepare, but he remains supportive and willing to try whatever I toss his way.  Although I struggle to find coupons for our groceries, I know that the way we shop for toiletries and household items will forever be changed.