Two years

Dec. 15th.  For most people, this date simply means they have 10 more days to shop.  For me, it is a day I will never forget.  Two years ago, on December 15th, I spent 4 hours at Children's Hospital with Julia (and my Dad - Thank you Dad!) and found out that my perfect 8 week old little girl was blind due to a cataract, needed surgery and would wear a contact and patch.  In some ways, it was a glorious day.  I had spent the night worrying that she had cancer or something equally as terrible, so to hear that it was "just" a cataract was a relief.  But it was emotional, and scary, and I will always remember.

This is the day of the appointment.

 

Now that two years have passed and we have adjusted to this EYE world, I can realize that I have so much to be thankful for.  I know that I probably should have done a Thanksgiving post, but I never got around to it.  This two year journey has been wonderful and horrible at the same time.  But I couldn't have done it with the support of so many different people.  So in honor of the two year anniversary of her diagnosis, I wanted to express my thanks.

 

 

My family - Thank you for all your support and prayers.  For keeping Jed overnight so that we could get to early morning surgeries.  I can't count how many times my mom has driven me to appointments with Julia and been my rock when I got bad news.  Thank you for loving Julia so well.  I know I can always count on my family, and for that, I am extremely grateful.

 

 

 

Imoms - I couldn't have done this without you.  That night, I got on the internet, and the reality of what we were facing became real.  I read about patching and contacts and knew that this wasn't going to be easy.  But I connected with you all, and saw my story in your blogs.  Then it was emails and instagram and knowing that I was never alone in this crazy EYE world.  From the depths of my soul, thank you.  I love knowing that out there, somewhere, is another mom that has experienced these emotions.  I remember that and don't feel so alone.

 

 

 

Technology - yes, this is a weird thank you, but I am so grateful for technology.  For the tiny instruments that allowed a surgeon to remove a cataract from an infant.  For the contacts and research that helps the doctors know what to do.  I know that even 25 years ago, her outcome could have been much different.

 

 

 

First Steps - I am so thankful for the OT, speech and vision specialist that have helped Julia meet her milestones.  And for the glasses!  First Steps has provided Julia with glasses that would have been very expensive for us to pay for.

 

 



Prayers - I am so thankful for the prayers from my friends, family and church.  My church family has been so accepting of Julia and her patch.  They pray for her and love her and accept her.

 



I know this is a cheesy blog post, but my heart really does swell when I think of how much we have been through in the last two years.

- 4 surgeries (with one more scheduled)
- 4 pairs of glasses (with more than 8 prescription changes)
- countless boxes of patches
- 20+ appointments with the Eye Clinic
- Thousands of tears
- Millions of smiles, laughs and hugs



Obviously, Julia is no worse for the wear.  She has come through everything like a champ, and I am sure she will continue to tackle any obstacle that comes her way. 

EYE will not give up

I sometimes feel like throwing in the towel.  Patching is hard.  Watching your baby struggle is torture.  The constant eye doctor visits, the glasses, the patches, all of it.  I honestly sometimes want to throw in the towel and call it quits.  She has enough vision, right?  Is she really going to see more if we keep patching?  ACK!

We just saw the eye doctor yesterday, and it wasn't great news.  Another surgery is planned.  This time to correct the muscles (again).  Except now the eye is floating upward instead of inward.  They also will do an exam under anesthesia (EUA) while she is under anesthetic.  They want to get a good measure of her eye pressures.  Her prescription keeps changing so drastically that they want to make sure it is not glaucoma causing the growth.  This is surgery number 5 for my little champion.  It is so disheartening and it gets frustrating to feel like you are constantly getting bad news when you go to the eye doctor.  I am looking forward to the day when Dr. Hoekel says, "You can stop patching now!  Those years of frustration, the tears, the bribes have all paid off and your daughter can see!"  That is my prayer.  I want to hear that sentence one day.

Thankfully, our ophthalmologist and optometrist are great.  They are really supportive and encouraging.  But I admit, I was holding back the tears on the drive home.  It just gets so tiring, you know?  It just feels like it is one thing after another and my little girl can't seem to catch a break.

Don't get me wrong.  I count my blessings everyday.  I have two beautiful children that are healthy and happy.  I have supportive family and a wonderful husband.  But I still wish I didn't have this battle to fight.  I don't want to hand my baby off to a nurse (again) for a surgery.  I don't.

The good news is that Julia was able to finally read the Allen chart and identify the car, horse, cake, etc.  This is the first really good measurement we have had of her vision.  She has done the Cardiff test before, but that is a preferential test, so it isn't completely accurate.  She was able to read the 20/60 line with her left eye and 20/160 with her right.  Her prescription changed again, so we are getting new lenses for her glasses.  She was so brave and so good!  She sat calmly and let the doctors look in her eye, shine lights in her eye, everything!  6 months ago, we were holding her down and prying open her eyes for the exam.  She is growing up (sniff, sniff).

So I guess I won't give up.  We will keep patching, keep trudging on, keep trying to improve her vision.  In my head I know that it will be worth it in the end, my heart just doesn't feel it right now.

Thankfully surgery isn't scheduled until after Christmas.  So we are going to enjoy the holiday.  Good thing I ordered some Christmas themed patches!

Pumpkins

I love fall!  Pumpkins and cooler weather and all the fall activities.  It is awesome!  We've had a blast going to trunk or treat, picking an carving pumpkins, and being together.

 

We had a blast at the pumpkin patch.  The kids rode the ponies, played in the corn, rode the barrel train and picked their own pumpkins.  The hayride to the pumpkin fields was fun.  On the way back, the tractor ran out of gas, but it ended up being a blessing in disguise.  The tractor stopped right by where they are digging a new pond so Jed was entertained by the bulldozer while we waited for gas.  It was an awesome afternoon.

 

 

 

 

 

 

 

 

 

 

 

 

James got the kids the biggest pumpkin ever!  He remembers always wanting a big pumpkin as a kid, so I guess to relive his childhood, he got a ginormous pumpkin.  The kids loved it and had so much fun carving it.

 

 

The kids are officially ready for Trick or Treating.  We went to trunk or treat at their preschool, and they had a blast.  We also went to trunk or treat at a local church.  I made the mistake of taking Julia to that event with her patch on and she really had a hard time.  It was one of those situations where you could really tell that she is impaired when patched.  She was stumbling over the concrete and having trouble locating things.  About half way through, I took the patch off.  I wanted her to enjoy herself and I figured a half hour of patching wasn't worth it.  Now we are just praying that the rain stays away on Halloween!

Birthday!

Can you believe my little girl is 2 years old?  Seriously, I am wiping away the tears as I think about how quickly time passes and how much my baby has accomplished in two short years.

From this:

 

To this:

 

To this:

 

I seriously love this picture of her.  It is refreshing to see her without her glasses.  And even though her eyes look different and you can see the "problems" with them, all I see is a lovable, sweet, happy little girl playing with a naked baby.  Because what little girl doesn't like to play with a naked baby doll?

 

Julia's birthday was a smashing success.  My husband and I have decided that the cost of paying for a party is a worthwhile trade off for the craziness of cleaning, cooking, and prepping for a party.  So we had her bash at Pump it up.

 

Julia loved the slides and the bouncy houses.

 

Seriously, we all had a blast.

 

Even the grownups!

 

 

I had an epic mom fail moment when I realized (the morning of the party) that the store I ordered her cake from didn't open until 9:30 and the party started at 10:00.  So we grabbed a cake from the grocery store and called it done.  And really, it must have been meant to be, because there was a pink camo cake in the cake section!

 

Turning two also means starting preschool!  Julia will be attending United Services two days a week.  She spends the morning in a special education room that is provided by First Steps.  They have speech activities, PT, OT, all kinds of things to help her continue to develop.  The amazing thing is that she does not touch her patch AT.ALL. when she is there!  She fights me tooth and nail, but will leave it on at school!

 

 

Notice her holding the patch in her hand?  That is where the patch spends most of its time nowadays...except at school, like mentioned above.  She really does like school.  The only hard part is drop off.  She didn't cry the first day, but now she realizes I am leaving and cries when I try to sneak out.  It is heart breaking.  But just one of those things that you file under the "times it is hard to be a mom."  Of course, that file is SUPER big and I am realizing there are lots and lots of those moments on a daily basis.  When Julia says, "No patchy!" and buries her head in my lap to avoid getting stuck with an eye sticker - that is definitely one of those moments.   When you see your daughter struggle to navigate a trunk or treat event because she is patched - another moment.  When she takes off her diaper and poops on the floor - another moment (and yes, that really happened - you can stop laughing at the mental image now.)

 

But even with that super big "hard to be a mom" file, there is an even bigger "being a mom is fabulous" file.  With moments like these:  watching your daughter jump in a bouncy house and grin from ear to ear, hearing your son ask your daughter if she is his "best friend" and then hearing her say yes, and watching your daughter pick up a small toy off the floor (and you almost cry because you realize she can see the toy).  Those are the moments.  Happy Birthday Julia.  It has been a roller coaster couple of years, but I have loved every moment. 



 

 



 

 









 

 

 

Better late than never

So I have been super neglectful of this blog.  School started, it was back to work, and suddenly I don't have a free moment to breathe, let alone blog!  I swear that some days it feels like I am barely treading water with my nose in the air trying to keep breathing.  Work is SUPER busy.  It seems like the challenge of a new tract to teach was a little more than I expected.  Add in supervising detention and tutoring to make some extra money, and my days are busy.  Then I still have IEP's to write, meetings to go to and data to collect and compile.  So much to do!  Don't get me wrong, I love my job, but it seems the requirements for teachers has increased tenfold this year (thank you Common Core.)

There is not one pic from that morning with his eyes open.  Oh well.

Jed started preschool this year.  He goes two days a week to an inclusive preschool.  The preschool (and daycare) is where several local school districts provide Early Childhood Special Education, so there are always a lot of teachers and helpers in his room.  He loves it and is learning a ton.  But with a new school comes a different drop off on those days and a new routine.  We also have to add in a plethora of birthday parties to attend for all his new school friends.  Julia will be starting there in a couple weeks after she turns two.  She actually will have her mornings in a special education setting to work on her speech and vision impairment.  I am excited to see how she grows and develops when she is in a class with peers.

A Hawaiian luau for the neighbors birthday. 

But now for updates.  Julia saw the eye doc early.  We couldn't wait until October because she suddenly started refusing to wear her glasses. Her prescription changed again.  It has changed every 8 weeks.  So now she is down to a +5.75 in the left (that eye has been stable for a year) and +6 with a +3 bifocal in the right.  I never would have imagined that her prescription would ever be that low without an implant.  But here we are.  Doc says she really doesn't use her right eye much unless she is patched.  Not sure how to fix that.  We see the head doc at Children's Eye Clinic in December for her next visit.  I'm interested in what his opinion is.  In the meantime, we wait for the new glasses to come in and keep trying to patch.  She still rips off her patch often, but we have had a few days where we only used one or two patches for the whole time. Of course I probably just jinxed myself by putting that in writing. 

First Steps is paying for new glasses and sunglasses, so that is good.  I don't know how we could have afforded new glasses (or lenses) every 8 weeks.  This is her 5th prescription change in less than a year! 

Trying on Jed's helmet.

Enjoying the last few days before it cools off.

 

We attending the East High homecoming parade (the school where I teach).  Both Jed and Julia had a lot of school spirit (which resulted in a lot of candy).  I loved seeing my students in the parade, and Jed and Julia enjoyed the fire trucks and candy.

My little "Lions."

So for now we are just plugging forward.  Trying to keep the pace and enjoy life! 

Vacation is over...literally

Today was my first official day back at work.  Boo.  Summer is officially over for our household.  I am blessed to have a job that allows me to be home with my kids for almost 10 weeks in the summer and blessed for the benefits that come with that job.  But it is certainly hard to go back in August.

My days are about to be filled with lesson plans, IEP's, paperwork, meetings, more paperwork and lots of students.  No more mornings at the playground or pool, crafts, projects or fighting the patch (except on the weekend).

Jed will be starting preschool next week.  He goes on Tuesdays and Thursdays and he is really excited.  Julia is staying in her in-home daycare and will go to preschool on Tuesdays and Thursdays when she turns two in October. 

Last week we went on an 8 day cruise with our family.  It was a blast!  I was nervous about having small children on a cruise, but it ended up working out perfectly.

The hardest part was getting there.  Two flights with a layover and a crabby cab driver to the hotel.  We were beat!  The cab driver tried to charge us extra because we didn't have car seats.  He was crazy.  Then the next day, trying to get onto the ship, all the computers crashed and we ended up sitting in line for 2 hours.   They didn't get the computers up and running until much later, so they let everyone on and did the paperwork by hand.

Finally on the ship!

 

Because of a tropical storm, we ended up with a different itinerary.  We had two full days at sea to start.  We did a little swimming in the morning, sent Jed to Camp Carnival (best thing ever!) and then picked him up for lunch and naps.  It was relaxing and wonderful.

 

It was a little windy!

Fun with Daddy!

We stuck to the kiddy pool.

 

The first night at sea was formal night.  We got all dolled up and took some pics and then ate a fancy dinner.  The kids were surprisingly well behaved (giving them any food they wanted didn't hurt!).

Fancy clothes!

Handsome boy!

Attempting a family photo.

She loves pasta!

So does he.

Brownies are good too.

 

On the second day at sea, I took the kids to a "Build a Bear" workshop at Camp Carnival and they each made a bear.  You may notice that for a LOT of the trip Julia doesn't have a patch.  We tried so hard and usually only got about an hour a day.  She wouldn't even be bribed with the binky.  I told her she could only keep her binky if she left on her patch.  She calmly handed me her binky out of her mouth and then ripped the patch off.  Little stinker.

Making a stuffed bear.

Fun!

 

That evening, we figured out that Jed could eat dinner at Camp Carnival and then stay and play.  They had tons of planned activities for the kids, and he really enjoyed being there.  Every night they painted the kids' faces.  It was so cute!

Ocean theme night.

Superhero night.

Pirate night (this was my favorite).

Animal night.

Circus night.

 

Our first stop was Aruba.  James and I were able to go explore the shops by ourselves because my awesome parents watched the kids for a few hours.

Going to hang with Grandma and Grandpa!

 

That evening, they watched the kids again so that we could go on a sunset cruise.  It was gorgeous.  Blue water, blue skies, a smooth sailing catamaran and adult beverages.  Heaven...

Kid free for the evening.

Our view.

Happy and relaxed.

 

We were able to stay at Aruba another day and so we all hit the beach.  The kids loved the water and the sand and had a blast.  I think they would have been content to spend everyday at the beach!

Fun in the sand.

She loved it too.

 

After the beach.

 

Exhausted.

 

We were able to have dinner every night together, which was nice.  We got to dress up a bit and just enjoy the company of our family.



Beautiful.

 

Towel animals every evening.  Kids loved it.

 

So fun.

 

Our next stop was Dominican Republic.  We went on a fun excursion that included a speed boat ride, beach stop and swimming in a natural pool at a sandbar.  Unfortunately, it rained a huge portion of the day, so it wasn't that enjoyable.  I didn't really have many good pics of our soggy selves.

Finally stopped raining for a few minutes.

 

The last stop was Grand Turk.  James and I were able to do a SNUBA excursion.  It was amazing!  We both now want to get our scuba certification.  The kids were swimming at the Margaritaville pool with my parents.  We joined them at the pool for a bit and then headed back to the boat.

 

The last day was at sea, and we hit the pool and had a nice dinner.  Just relaxing.





Sweet girl.

 

Swimming.

 

Posing for Mom.

 

Lunch in the room.

 

Just happy.

 

She is too.

 

Last night at dinner.

 

The trip home was a little stressful.  Again, two flights with a layover.  We also had to get off the ship at 8 am but our flight wasn't until noon.  So we had to corral 4 kids ages 4 and under for several hours in the airport.  We actually blocked off a section of chairs and I pulled out every activity I had (I made like 20 busy bags before the trip).  It worked for awhile.

 









Meltdown time.

 

Hanging in the airport with the family.

 

Still having a meltdown.

 

Getting tired.

After a long day of travel, we finally got home.  It was wonderful sleeping in our own room, in our own bed.  We got home Sunday evening, I had a conference to attend on Tuesday and started work on Wednesday.  So we hit the ground running as soon as vacation was over.

 

So literally, our vacation is over.  But it was sure fun while it lasted!