Holiday Card

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Now that we finally sent out our Holiday Card, I can post some pictures from it.  We made several attempts at a holiday card photo shoot and the last time, we had enough success to do a multi picture card, which in my opinion was pretty successful.  At first we tried to get a family shot of the four of us in the backyard.  Those didn’t work out quite so well.

We decided we would have better luck if we only featured the girls on the holiday card.  Odds of having two people look good vice four were much better.  So we took the girls to Glyndon Park and had them run around in the leaves and play on the swings.  The leaves were a little scary to Avery but once she was in the swings she was having a blast.  Emerson had us cracking up because she was picking up logs and trying to move them.

Welcome To Holland

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WELCOME TO HOLLAND

BY
EMILY PERL KINGSLEY.

c1987 by Emily Perl Kingsley. All rights reserved. Borrowed from:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

I found this poem probably close to a year ago on one of the social network sites on nystagmus.  It was this time last year that Avery was diagnosed with nystagmus. We went up to Hopkins knowing that nystagmus was a possibility since she really hadn’t started focusing since her cataract surgery at 5 weeks and her eyes seemed to be in constant motion for the last few weeks.  I remember the visit vividly.  We drove home that night with so much uncertainty.  We were told Avery wasn’t blind but at the time I think we felt that she wasn’t far from it.  How could this be?  This wasn’t what we signed up for.  We signed up to have two perfectly healthy children.  This wasn’t supposed to happen to me.  These were just a few of the thoughts that were running rampant in my head.  We went home that night to our condo where my parents were awaiting our arrival.  We told them of Avery’s diagnosis and the tears began.  The truth was nystagmus is not actually a diagnosis; it is a symptom, which meant we still didn’t really know her diagnosis.  We were going to have to schedule a MRI and possibly see a geneticist specializing in small eyes.  I ended up taking the next day off of work; I just wasn’t ready to go back especially considering it was a Friday.  And that is when my research began.  

The internet is equipped with so much information.  You can’t believe everything you read, but if you understand that the internet can be a wonderful place for resources.  RESOURCES = KNOWLEDGE = POWER.  I have found that there are SO many eye disorders out there and SO many of them have so many of the same symptoms and so many of them are diagnosed by an ophthalmologist looking at the patient’s eyes (talk about scientific)! 

Over the past year we have had more doctors appointment than any little baby should have EVER and we have seen many doctors and specialists, and to this day we still don’t have an official diagnosis. Avery had her first ERG done January 31, 2012 at Will’s Eye Institute in Philadelphia.  She had it performed while awake and the results came back as showing mild cone abnormalities.  Overall, the doctor’s felt it was inconclusive and that we should have the test repeated after Avery turned one.  So on November 6, 2012 Avery had her second ERG performed at Wilmer Eye Institute at Johns Hopkins.  This time she had it done under anesthesia so that her doctor at Hopkins, Dr. Repka, could perform a full eye exam at the same time.  He told us the preliminary findings of the second ERG was that it was NORMAL!!  It showed Avery had NO cone or rod abnormalities, so that ruled out ACHROMOTOPSIA (which I was certain she had for awhile) and all other cone/rod dystrophy’s.  Since Avery is developing normal and her MRI came back as normal, Dr. Repka feels that it is limited to her vision.  He basically felt that her cataracts were the cause of everything else (nystagmus, dilated eyes, small eyes, photobia, etc).  This was good news….

Until we received the formal write up of the procedure from Dr. Repka  While we have known since Avery was only a few months old that she had small optic nerves and her eyes are a little smaller than normal, this was the first time I had ever had a doctor use the work hypoplasia….optic nerve hypoplasia.  In it’s most basic terms optic nerve hyspoplasia (ONH) means small or under developed optic nerves.  However, ONH is often associated with several developmental brain abnormalities; midline brain structures including the pituitary gland. And if the pituitary gland is abnormal, growth hormone deficiency may result in delayed growth and development of a child.  So obviously I wanted to know does Avery have ONH because nothing indicates that she does.  A few weeks later I asked Repka and he did not want to give her that diagnosis; however, as her mom I want better answers.  At the same time I asked Repka about the official ERG report.  Well guess what it HAD come back with minor abnormalities in the cones of both eyes and the rods of the left eye.  What in the heck does this mean?  Repka wasn’t certain if there were any implications because of this or not.  So once again I found myself confused and wanting more answers.  Is Avery’s case really that rare?  I have done TONS of research and think that the answer might be yes but I honestly don’t know.  What I do know is that I think it is time to get some more expert opinions.  I want to take Avery back up to see Dr. Levin in Philadelphia.  I plan on contacting him via email in the next week first but I have to work on my email so that it captures his attention.  And while we still don’t have an official diagnosis, and may not for awhile Avery clearly has nystagmus and in my opinion strabismus (her eyes have been misaligned over the course of the few months).  Nystagmus can not be cured but there are options to improve it and strabismus can be corrected.  The visual systems most critical period is between 0 – 6 months of life and then after that a child’s visual system continues to develop until about age 8.  I’m on a mission to connect Avery with the right doctors…they are out there, I just need to find them.  While I don’t want her life to be about doctors and finding an official diagnosis, I think it’s important we do a little more at this point in time to get some answers.  I hope to have a plan of action in place in the next few weeks.

Winter Walk of Lights

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This year at Meadowlark Gardens (where Justin and I were married :)) they had a Winter Walk of Lights.  I drive by it on my way home from work every night and when we passed by it again this weekend, Justin and I knew we had to go.  Tonight was the coldest night of the season thus far at 37 degrees.  We bundled the girls up and they seemed to have a pretty good time despite their super red cheeks.  I was really hoping to get a good picture of the girls for our holiday card but they just don’t like to sit still and look at the camera.  Here we are enjoying the holiday music and watching the light show. 

Reaching up to catch the lights!!

Freedom to Run

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The girls LOVE the freedom that their walking legs gives them!  Since we don’t really have an ideal yard to let the girls roam freely, we like to take them to the park or open green areas whenever we can.  So this past weekend we walked up to Wolftrap Elementary School (my old elementary school) and let them run around in the field.  It was very sunny and Avery wouldn’t keep her glasses on so she was squinting quite a bit; however, it didn’t keep her from  having a great time.  Emerson loves to throw the ball!

And Avery takes off….

But Daddy isn’t too far…..

Daddy captures Emerson first!

Mommy then captures Avery…

…Only until Daddy captures both!

Emerson thinks Daddy is SO MUCH fun!

But DADDY, DOOOON’T put me down!

And then it was time to go home for our afternoon nap!

 

Halloween

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We celebrated Halloween twice this year!  We visited our friends Stacey and Cooper and their little girl Lindley this past weekend.  They moved to Raleigh, NC a few years ago and have a beautiful single family home in a great neighborhood.  It makes me very excited and eager for the day that Justin and I finally have our single family home; at the same time it makes me enjoy our time in limbo living at my parents that much more since our household responsibilities are minimal compared to what they will be when we are finally homeowners (renting our condo doesn’t really count). So with little household responsibilities it makes going on weekend trips such as these that much easier and actually enjoyable, knowing there isn’t a whole lot else at home that I really should be doing.

Saturday morning they had a neighborhood Halloween Parade which was kicked off with a short walk following a fire truck and ended with games and crafts and each kid receiving their own small pumpkin. Here we are following the fire engine…we were the very last group of people….

The girls were a little too young for the games and crafts; however, they still had a fun time running around freely in the streets.  Neither girl wanted to hold Mommy or Daddy’s hand and they just took off!  Don’t worry the road was closed for through traffic!

We had a great time and when we got back to Stacey and Cooper’s house we decided to take a few more pictures of the three girls together.  Here are the results!

LOVE Lindley’s facial expression in this one!

What you think you lookin at Ms. Lindley?

The girls had different nap and night time schedules so they didn’t spend that much time playing together, but when they did they seemed to have a fun time.  We can’t wait to go back and visit again!

 

Halloween was a few days later.  We dressed the girls up and took them trick or treating.  Now incase you are wondering what the girls were dressed as, they are mice impersonating cats…DUH!!!  Yes, so THIS mommy bought these cute shirts at Target thinking they had CATS on them and thought “CATS, what a great Halloween costume”.  So over the next few weeks, I found black leggings, a tail, whiskers, and ears and I thought my little cats were all set to trick or treat!  Well the night before Halloween I decided to try on their costumes and as they were running around the house all so cute, Daddy informed me that their shirts had mice on them….MICE!!!!!  I was never big into cartoons or Disney Characters growing up, but SERIOUSLY how did I miss this!!  So my babies became mice dressed up as cats…LOL!  And I was the mama cat who they were trying to run away from!  The girls wouldn’t keep their ears on or their whiskers so I finally decided I would draw whiskers on them.

  They didn’t seem to realize thy had tails on so they thankfully kept them on most the evening.  Mama Cat and her mice (aka CATS) went trick or treating at 7 or 8 houses in the neighborhood.  Mama Cat even let the girls try their first piece of candy…a Kit Kat, which they both seemed to enjoy!

This Mama Cat better start planning early for next year and run the costume idea by Daddy in advance!

Cox’s Farm – Fall Pumpkin Festival

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This past Saturday we took the girls to Cox’s Farm Fall Festival.  It was a beautiful fall day, temperature perfect…warm in the sun and more importantly warm enough for no coat!  We let the girls get out of their stroller and walk around.  Emerson loved it; Avery not so much.  She took a few steps when we first got there, but then she cried off on and on the entire time.  When she was out of the stroller, she would cling to me or Justin for dear life.  Sometimes big events such as these that are out of the every day norm are sensory overload for her. Still when she cries, I can’t help to laugh sometimes. I know that is awful as a mom but she seriously has the CUTEST pouty lip that I have EVER seen!  Emerson on the other hand was LOVING the freedom that those chunky little legs of her give her.  She had a great time checking everyone and everything out and loved climbing on the hay!  

Our first attempts at getting a picture of the girls together.

Okay maybe if Mommy gets in, we’ll get a better shot?

New plan…let’s walk around instead.  Maybe we’ll be ready for pictures later….

Little Avery was hungry and crackers just weren’t cutting it.

So we took a quick lunch break with the food mommy packed us!

Mmmm…chicken nuggets daddy!

With full tummy’s, the camera came out again…Emerson and Mommy posed in the pumpkin carriage….

…but Avery still wanted no part of it.

Next we found the hay!

And guess what…Avery still wasn’t a happy camper 🙁

until she started trying out her football moves….AVERY GO LONG!!

Emerson made a new friend and made certain things stayed under control.

And the time came that we were nearing the exit so we tried to get a few more pictures where we were all smiling…

We’ll get there one day!!

Avery is Walking!

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I think it is fair to say that Avery is a walker now.  She still crawls some but usually if there are no walls around her whatsoever.  She is walking unassisted more and more, still wobbly, but every day there is improvement in balance and distance.  She is very determined to walk and she continually gets back up and does it again after she falls.  Watching her determination brings such joy to my face.  Avery has been using the walker some too in learning to walk.  She’ll go get it from the other room and she even can maneuver it pretty good now.  If she runs into a wall, she’ll just turn herself around until the path is open again.  She doesn’t get frustrated one bit. Emerson used the walker some when we first got it in the summer but since then it pretty much sat in the corner until Avery started using it recently.  Well, Emerson has recently started to become a little jealous of Avery and has all of a sudden found a recent interest in the walker.  She too now likes to use it. Emerson has also become more cuddly lately.  Avery is generally the more cuddly of the two and likes to sit in laps especially early in the day.  Emerson now likes to bring a book to read and sit in laps too.  It will be interesting to see how this evolves.

Frying Pan Park – My Birthday!!

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Sunday for my birthday, we took the girls to Frying Pan Park with my parents.  The girls got to see pigs, horses, cows, chickens, sheep, and goats.  We had taken the girls here once before in April and it was neat to see what a difference 5 months makes at their age in terms of their awareness of the animals and their surroundings.

Here is Grandma with Emerson and Mommy and Avery in the background minutes after arriving at the farm!

Only a few minutes after we got there, the “papa” goat herded his family and the loud noises that goat made scared the heck out of Avery and she pretty much cried the rest of the time we were there.  Here is Papa Goat…well his rear anyway!

I must admit I don’t blame her…I had never experienced such “herding” before and it was neat to watch. Emerson seemed to have some cognitive understanding of the animals which was really neat to watch.

Emerson wanted Grandpa to give her a closer look.  Have you ever seen a goat stare you directly in the face?  It’s kinda SCARY!!

Meanwhile Papa Goat stuck around in Avery’s mind pretty much the whole time.

Mommy’s turn to hold Emerson now!  We got to see cows!

And the family shots!  Come on girls look at the camera!

Fine mommy if you insist but I’m not smiling.

 


Meadowlark – Birthday Weekend

Image

 

I’m not very good with the computer so it took me a few weeks from the time I decided to blog to finally set one up…Thanks hubby!!   My birthday weekend was a few weeks ago but it was SO much fun.  Saturday we took the girls to Meadowlark.  The weather was  nice and sunny.  We dressed the girls in their white dresses, the ones we used for their 1st birthday pictures.  I figured they would grow out of them before the next warm season.  So we put a blanket down and attempted to take pictures of the girls together.  Needless to say the idea worked better in my head than it did on paper. Emerson kept running away the second I placed her down and Avery kept moving as well.  We got a few pictures; albeit not the ones I pictured in my head.   After realizing a true photo session was not going to occur we walked around the gardens and looked at the fish and the ducks.  Avery even started saying duck! The girls would not stay on the blanket alone as I had planned so I had to sit with them and even then I still had one “runaway”.  So here is just me and Avery.

And the “runaway” returned!

Once bottles were done, we strolled along the path….

….and made our way to the Gazebo where we saw lots of koi

…and attempted a few more pictures with Mommy! Wait we weren’t ready…

Okay, now….Mommy is ready 🙂

Okay so maybe we didn’t get the perfect picture, but we had a fun time!

I HAVE A BLOG!!!!

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I wouldn’t exactly call myself an extrovert.  While I have a bunch of great friends, I’m not exactly the type that likes everyone to know everything about me.  I’m quiet by nature and in truth that’s how I like it.  Every once in awhile I’ll be crazy and my husband and I will make friends with “outsiders” on vacation but then we end up regretting it because we end up seeing those same people non-stop and then we feel like we HAVE to talk to them every single time.  So the idea of having a blog and having others know my business is a little scary. 

But I started following a few blogs this year, not many but just enough that I remember to check in on them every so often.  I thought to myself this is a great way to not forget!  When the girls were nearing their first birthday I decided to write them a letter.  I was already starting to forget how hard and tiresome (but worth it) those first few months were and I wanted to always have those memories fresh in my head.  I was starting to forget some of their milestones.  I don’t know if was pregnancy brain that never went away or the fact that as each month passed, I was just amazed at their development and these little people who they were becoming that it was easy to forget events that happened months prior.  I found that each passing day with the girls brought so much joy that the days of the three hour feeding cycle through the night and functioning on only a few hours sleep while not so long ago, had long been forgotten. 

So I wrote them each a letter for their first birthday.  For now, it remains in their Baby Book, but one day they will have it to read.  I want the events and memories to always be vivid and vibrant.  I want the girls to one day be able to know all the wonderful things we did as a family, they learned or did for the first time, and the emotion accompanying it all.

I decided I would write a letter to the girls on every birthday.  But what was missing from these letters was pictures!  Justin is an awesome photographer.  He has such a passion for it, which is great because I LOVE having so much of the girl’s lives documented, and I can barely operate the camera.  This is not a joke…when I do take a picture I often cut out a few heads in the process.  Anyway, right now we have pictures galore downloaded to our computer and I wanted a way to tie my “journals” with Justin’s pictures. 

I want the girls to know how much I LOVE being their Mommy!  I always knew I wanted kids but I was never one of those women that felt like motherhood was my sole purpose in life.  When Justin and I got married, we knew that we wanted to experience life as a married couple for a few years.  We were enjoying life and vacations to the Caribbean and Europe that we knew would be infrequent once kids came along. But once we these little boogers came along, life has been WONDERFUL!  They have managed to light up our lives in ways I never knew possible.  I couldn’t be more in love with my kids. I love them so much that literally sometimes it hurts…CRAZY! 

So here we are and the time has arrived that I have gone from Stalker Blogger to Blogger. 

This may sound silly but one thing I don’t want to forget is that the girls drank breast milk until they were 13 months old.  I don’t want to forget because I consider this a HUGE accomplishment!  I don’t know that I ever had a true goal because I didn’t want to set myself up for failure, but I can honestly say that I was hoping to make it to at least 6 months but was going to be happy if I even made it through 3 months.  It was a huge time commitment but I had a great support system at home and at work who made the difficult task less challenging.  When the girls were 13 months and I completely stopped nursing and pumping, it was bittersweet.    On average I spent close to 4 hours pumping and or nursing everyday, prior to the last few months when I started weaning!   I HAD TWINS…there are not 4 extra hours in the day!!!!   Again, I am so proud of myself…no matter how tired or frustrated I ever was, I never once wanted to fold in the towel.  But now I must admit it is nice to have that extra time back in my day and now that my evenings are “free” I should have more time to cook and workout and sleep!  One definite bummer is that now that I’m done nursing and pumping, I have to start watching what I eat again.  This entire year was the first time in my life I could eat ANYTHING I wanted and I was still a size 2!  That is so not me so for once in my life it was so wonderful to live in the body of a naturally skinny person. Oh, if only that would last forever!

Anyway, LET’S BLOG!!!