Busy, busy, busy

Life is busy!  I somehow thought that summer would mean relaxing and catching up on sleep.  I was wrong.  Life with a 9 month old and a 2 year old is not quiet or relaxing!

Jed and Daddy sleep.  Notice I am not sleeping - I am behind the camera because I am awake!

We've been spending time at home, going to the park and trying to enjoy the summer.  We've been to the pool, Science Center and Zoo.  Julia and I just returned from Pennsylvania visiting good friends.  Julia did great on all the flights and was so good!  We almost lost a contact in a supermarket - but thankfully my friends saw it before it was lost!

Jed at the splash pad!

Now we are getting ready to head to Branson with my family.  Not sure if Jed understands what a "vacation" is, but I know he will have a blast with his cousins.  Before we go, Julia has her IFSP meeting.  Because of her vision issues, Julia qualifies for Early Intervention through the state of Missouri and receives monthly visits with an occupational therapist.  I am excited to review her progress and look at the goals we have for the next 6 months.

Look who can stand for a few seconds!  We won't have to work on that with the OT!

I hesitate to write this, but I feel like we have hit a "plateau" of sorts with the eye.  This latest contact is actually staying in - which has reduced my stress level immensely.  I am also less nervous and worried because we have had several weeks of consistent contact wearing and patching. 

We did have an unfortunate experience at Wal-Mart though.  We were checking out and Julia was sitting in the cart.  She had her patch on and the cashier asked why she had it.  I simply said "she was born with a cataract and has had several surgeries."  She started going on and on about how she felt so sorry for "kids like that" because they get made fun of when they are older."  Then she kept talking and talking and even said "Her eye is so freaky!  It is weird the way it stays in the middle."

Needless to say - I had a chat with the manager.  I think the girl just didn't know what to say and was uncomfortable and ended up with a horrendous case of verbal diarrhea.  I still am not used to the reaction I get when people look in her car seat and see the patch.  I think she is adorable with or without the patch!

So as you can see, we have been busy, busy, busy!  We are trying to enjoy every moment of this last month before I have to go back to work.

Emotional

I seem to be an emotional wreck lately.  I've been stressed and edgy which turns me into a "cry at the drop of a hat" kind of person.  This last surgery for Julia took a toll on my emotions and I still don't feel quite right.  My biggest fear now is that we have been 7 weeks (YES, SEVEN weeks) without a contact or patch.  Her eye is constantly turned in now. My mind begins to race and I begin to think that we are missing the window - that this critical time when her brain should be connecting with her eye is flying past and we are MISSING it.  Then I obsess and worry and cry and sometimes turn into an OCD crazy person.   (My poor husband gets the brunt of that last one).

Her poor little eye.

I want to be in control.  I want a plan.  I want to make a list and check everything off, one by one. 

1.  Cataract surgery - check
2.  Wear contact - check
3. Patch her stronger eye - check
4. Get an IOL - check
5.  Julia can see - check

See how easy that would be?  Why can't it work that way?  Instead we have had -

1.  Cataract surgery - check
2. Can't find a contact to fit - check
3.  Finally find a contact - check
4.  Take out contact because of eye infection - check
5.  One month later lose the contact  - check
6.  Fight with insurance to pay for another contact - check
7.  Get a spare contact (that isn't the right prescription but is at least something) - check
8.  Lose the spare contact - check
8.  Have another surgery - check
9.  Wait what seems like forever to put contact back in - check
10.  Watch your daughter's eye slowly turn in more and more - check

To take back some semblence of control I asked the PO about glasses.  The first doc said no - that it would be a waste because the prescription for her aphakic eye (the eye with no lens) would be so high that it would be like looking through a magnifying glass.  Because the images would be so big, the brain would shut it off anyway.  Keep in mind this was the surgeon.

I sat on this for a couple weeks and then decided I wanted another opinion.  So I talked with the PO that handles Julia's vision - the doctor that determines her presciptions, fits her for contacts and helps with patching.  He said that we can do glasses but that it is the least successful option and most kids only tolerate them when patched.  I said that I didn't care - I needed something.  So off to the optical shop we went and got these:

But of course they are pink (I just couldn't find a picture of the pink ones).  They are really cute and hopefully will be in soon.  We will find out on Wednesday when we see the doc if we can put her contact back in.  We are caught in a horrible catch 22.  She desperately needs to wear the contact to restore her vision.  But in order to avoid a repeat of the scar tissue and regrowth, she desperately needs drops.  Lots of drops.  All day long.  If she wears the contact, the drops don't get into her eye - they are soaked into the contact.  Which puts her eye at risk and also ruins the contact.  But she needs the contact to regain vision and she needs her eye to not grow scar tissue to regain vision too!  Ack!  It is such a love/hate relationship.  I hate that she cannot wear her contact right now.  But I do love that I don't have to worry about losing it or putting it in.  Maybe I should just try to enjoy this time of no contact and no patch.  But then the eye keeps turning and turning.

I know it is vanity to be upset at an eye turning in.  But as a mom, I just want my little girl to be happy, accepted and "normal" (whatever that is).  The stares with a patch are bad enough.  But I also catch glances now because of the eye turn. 

The kids had their pictures taken and even the photographer commented on her eye.  It was so obvious in the pictures that I came home and cried.  Again - I know it is vanity, but my heart hurts for everything she has to go through.  At daycare today, when I was picking up the kids, I had to put in her eyedrops.  Another mom commented, "She handles that so well.  She must be used to the drops."  I don't want my daughter to be "used to eye drops!"

I guess I am having a small (okay big) pity party.  Maybe I didn't "grieve" when I found out about her condition.  I was so focused on getting through the initial surgery and getting a contact that I didn't really "feel" anything.  Now that we are just waiting and waiting, I am "feeling" a lot!  And I am angry, upset, terrified and angry.  Did I mention I was angry?  And upset?  And crying at the drop of a hat?

But all these emotions are worth it.  I wouldn't trade them because with all these emotions I got a beautiful little girl.  A sweet, happy, loveable, kissable, squeezable little girl.  Who right now doesn't know that her eye is turning and just loves smiles, hugs, kisses and her brother.

Waiting...

Now it is the waiting game.  The nurse from the eye clinic called me yesterday at work and asked about Julia's cough (she had coughed while she was seeing the doc).  I told her it wasn't bad, she didn't have snot or a fever.  She still said I had to take her to the pediatrician ASAP to get her cleared for anesthesia.  So I leave work (which means I lose pay) and take her to the pediatrician and he says she is completely healthy.  So I call the nurse back and tell them she is fine.

Then I wait.

And I wait.

And I wait.

They finally call me late in the afternoon to tell me that the doctor wants to do surgery next week!  What!  I left work to see a pediatrician and now you are making us wait until next week?

Oh well.  At least now I'll be on spring break and won't have to miss work.  But now I have to deal with nerves for a whole week (and a contact that won't stay in).  At least we don't have to patch.  But we are back on drops 4 times a day.

So I am trying to relax and be normal until next Thursday.  Thankfully I have two munchkins that keep me pretty distracted!

Finally a smile!

Monkey see, monkey do!

Jumping together!

Fresh corn - yummy!

Patches and camo!  Well - no patch today.

In related eye news - Julia is very sensitive to light.  I knew that if we wanted to do anything outdoors this summer that she was going to need some shades.  For grins, I asked the WalMart optical shop if they carried any infant sunglasses.  They looked at me like I had grown another head.  Then I explained that Julia wore a contact and she looked at me like that second head had morphed into an alien!  Really? - you are an optical shop.  The "manager" came over and said that they can fit a pair of youth glasses with sunglass lenses but it is 80 dollars.  No thanks.  I ordered these instead:

Pretty cool!  They are actually lavender and pink and come with a looping strap for around her head.  They are symmetrical so there is no up or down when you put them on.  I hope she tolerates them!

So keep us in your prayers.  Surgery is Thursday and in the meantime we have to keep track of an ill-fitting contact and keep her eye dilated with drops.  We are just waiting, and waiting, and waiting...but enjoying life during the wait!

camo

So you might be wondering what camoflage has to do with Julia, eyes or anything else.  You see, my husband is an avid outdoorsman.  Hunting, fishing, camping - he does it all.  And I usually go with him.  So we both own a lot of camo.  When I found out that Jed was going to be a boy I received a lot of camo for our little boy.  Julia even has a onesie that says "my favorite color is camo." 

The interesting thing about camoflage is that you wear it to disappear - to blend in with the surroundings - to not be noticed.  When worn correctly you should not stick out from your environment, but literally become a part of it.

The irony is that now we are nothing like that.  Anywhere we go - we do not blend.  We are not invisible.  We are noticed - by everyone. 

Amazing how a tiny little patch can do that.

Gotta love big brother - loves his sister, patch or not!

The first few times I went out with Julia when she was patched I definitely noticed the stares, the double takes, the lingering glances. 

The first few Sundays at church we got a lot of questions and we patiently answered them.  Most people already knew because our church family had been praying for Julia and for her surgery.  Now at church no one notices or comments.  I love that.  I love that our church family has accepted her and she is now "just Julia" there.

But at Wal-Mart, the mall, even the doctor's office - we get questions, comments, glances.  Some are pure curiousity.  People genuinely want to know what is wrong, how we knew something was wrong, why she wears a patch.

Others are know-it-alls and assume that she had tear duct surgery (what?) or that she simply has a lazy eye.  (Then of course they ask how we knew she had a lazy eye at only 4 months old).

When they find out it was a cataract - they are amazed that infants can have them.  And the reactions we get when people hear she wears a contact!  Yikes!  You'd think we were vain or torturous!

I don't know if I will ever get used to the staring and questions.  I liked it much better when we blended into our surroundings.  Maybe with time we will blend again.  Maybe we won't blend, but others will blend and we won't notice their stares.  Maybe if she wore a camo patch.  :)