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.

Blind Babies

In the beginning of March, we noticed that Makayla's eyes and vision development was significantly different than her brother's.  We took her to the pediatrician right away who referred us to an ophthalmologist and diagnosed Makayla with Nystagmus.

Nystagmus means a lot of different things, and it seems to be different in every person.  We are still waiting for Makayla to get to see a neurologist which will hopefully give us a lot more information about her Nystagmus, but for right now what we know about Makayla's Nystagmus is that it's "scanning" Nystagmus, so her eyes pan back and forth from side to side, they also occasionally jerk or shake.   Here is a video of Makayla's eyes panning back and forth while she plays on her back.

 

We also know that Nystagmus almost always come with significant vision loss.  When Makayla was first diagnosed, we were devastated.  I remember coming home from the doctor and trying to figure out if she could see at all, and being convinced that she was completely blind.  But, over the past month, Joey and I have noticed that she does seem to catch things in her gaze from time to time and works really hard to focus on it.  

Recently, our pediatrician referred us to an organization called Blind Babies, a local non-profit organization who works with families of blind or visually impaired children to make sure they have all the resources they need to raise happy, healthy, normal children.  In the weeks leading up to our in home visit with Blind Babies, I have been anxious, to say the least.  I feel like being in contact with an organization called Blind Babies means I'm giving up hope that she can see, like I'm failing her.  I also have felt like they were going to get to our home and show us everything we were doing wrong for her.

Yesterday afternoon, we finally got to meet our "Vision Impairment Specialist" from Blind Babies.  She was very pregnant, and calm and quiet.  She was kind, but I sat there nervously and she jotted down notes and stared thoughtfully at Makayla without saying a word.  Finally, after was was probably ten minutes, but felt like forever, she started to bring out some toys she brought and played with Makayla.  She brought out a bright red, sparkly pom-pom and moved it slowly in front of Makayla line of vision and back and forth.  Makayla followed it, moving her whole head back and forth to keep it in her sights and finally grabbing hold of it once it brushed against her hand.  

My eyes filled up with tears!  She SEES! My baby girl sees! *huge sigh of relief*  I don't know how well she sees, or if she'll see well enough to drive a car someday, but I know that she will know when mom and dad smile at her, and beam with pride and joy.  

The visit was so encouraging and helpful.  The specialist left us the amazing pom-pom and some other useful toys, like a mirror, and some bells for Makayla to shake.  She also brought a very neat quilt that is solid black on one side, making it easy for Makayla to identify any toys that may be lying on it, and on the other side are unique textured for Makayla (and Ausin too, probably) to feel and play with during tummy time.

The tools and toys we received from Blind Babies

The specialist also told us that our dark walls and hard wood floors, make a great home for a baby with visual impairments!  Another relief! As parents we worry so much about weather we are doing enough or doing things right.  It's so nice to have such an important resource available and know that Makayla is getting everything she needs to do well and succeed in this world!