Christmas

We had an awesome Christmas.  It was really busy and relaxing at the same time.  And the only reason I have time to write this blog and upload pics is because we are in the middle of snow-magedon 2014.  Really, that is was the newscasters called it.  Apparently it is a blizzard or something.  I don't care what they call it.  I'm just happy to have a snow day!

Jed was so excited about Christmas this year.  He looked for his elf (GT) every morning and was so excited to open his advent calendar and put another ornament on his "countdown" Christmas tree.  He was literally bubbling over with excitement.  I swear, 3 is an awesome age.

Julia was excited too and kept yelling "Enta" at any Santa-like figure.  She sat willingly on Santa's lap (twice!).

 

Jed made a gingerbread house.  Julia didn't get to make hers because she wouldn't eat dinner.  (Her refusing to eat meals has become the story of my life).

 

 

All dressed for church on Christmas Eve.  Julia looks happy here, but she actually had a horrible ear infection.  She woke up that morning in misery, so we went to the doc and found out it was her ear.  I felt terrible, because she had been fussy for a few days, but I didn't think anything was wrong.  Bad mom moment.

 

 

After church, we went to a Japanese restaurant for dinner (as is tradition).  Jed was awesome and thoroughly enjoyed watching them cook his dinner and light things on fire.

 

 

Julia was terrible at dinner.  She fussed and wanted on my lap and refused to eat.  In her defense, I don't think she felt really good.

 

 

Ready for Santa!  Jed decided that Santa definitely needed pink (strawberry) milk with his cookies.

 

 

Santa did not disappoint.  In hindsight, I think Santa might have gone a little overboard - but a LOT of it Santa found in the dollar spot at Target.  Jed asked Santa for a bow and arrow and a scooter and Santa brought both of those!  Julia asked for a baby doll and she got one!

 

 

Opening presents!

 

 

 

More presents!

 

 

After opening presents from Santa, it was off to my parents house for more presents and brunch.  The kids got a ton more gifts and we had a delicious meal.

 

 

Guarding his gifts.  Notice in the corner?  That white box?  Yes, my dad got my son a drum set.  Thanks Dad!

 

 

Julia had lots of presents too.

 

 

 

After Christmas at my parents, all of James' family came to our house.  By then I was exhausted (did I mention I had bronchitis?) so I didn't take any pics.  But the kids got a ton more presents and ate more yummy food.

 

Overall, Christmas was wonderful.  I love this time of year - seeing family, church services, the lights and carols - everything!  























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.