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!

Disappointed

I am pretty upset.  Not sure this post will make a lot of sense.  And I am definitely not in the mood to put up in pictures.

Julia had her eye appointment today.  It did not go well.  We had thought we would just get a spare contact, check her prescription and order a new contact.  Our doc put in a spare contact and then started looking at her eye with the lights and the little microscope thing (I really should figure out what those instruments are called).  He commented that her pupil seemed smaller than before.

So he took her to the treatment table and we held her down and really looked at her eye.  He told me he had bad news.

Julia has formed a membrane over her pupil.  If you really look for it you can see it.  The cells around where her lens was removed have regrown over her pupil and are blocking her vision.  He dilated her eye so that she can see a little better - with the pupil bigger she can see more "around" the membrane.

The really bad news - it has to be surgically removed - and soon.  Like day after tomorrow.  They are calling me tomorrow if they can squeeze her into the surgery schedule on Thursday.  If they can't we will keep her eye dilated with drops to help her see until we can get her into surgery.  She will technically be having a membranectomy.  Sounds fun right?

I am so mad and so frustrated and angry and sad and nervous for my baby.  It really feels like we just cannot catch a break.  Do I have a bullseye on my back?

So say some prayers for Julia.  I'll post more later with details - probably after surgery if we are going in on Thursday.

Feeling better

I haven't blogged since Tuesday, when we lost Julia's contact.  I was trying to stay so positive, looking on the bright side, accepting the inevitable.  Well, on Wednesday morning when we went out to load the kids into the care to go to daycare and work, we realized someone had bashed in the rear passenger window on our SUV.  This was the straw that broke the camel's back and I lost it.  Just when we had settled into "normal" we have 2000 dollars of hail damage on our car, ear and eye infections in the kids, a lost contact and now a smashed window.  I needed a few days to fume, vent, cry and whine a little. It just felt that I could not win.  Was it not enough that we were dealing with Julia's eye and all the things that come with that?  Isn't that enough for one family?  Why all this extra stuff?  I basically needed a small pity party.

 Now that I am done with my pity party, I feel like I can face the world again.  The sun is back out and the world looks a little brighter.

The day before the lost contact.

We are enjoying our week of no contact and no patch.  Her eye definitely turns in a lot more without her contact, but there is nothing we can do.  Her doc ordered her a new one and we are waiting for it to come in (it is made in Colorado).  She has her normal eye appointment on Tuesday anyway and may need a prescription change.  So the next few weeks could be interesting when it comes to the contact.  I am a bit nervous about this appointment because I have noticed her eye turning in a lot more even when she was wearing the contact.  And her good eye seemed to turn in sometimes as well.

The kids are finally feeling better and it seems the ear infections are clearing up.  Jed has been super rambunctious and has definitely hit the terrible twos.  This is how he "plays" with his sister's toys.

Saggy pants!

The playmat must be conquered!

I think the playmat conquered him!

But overall, we are feeling better.  The good weather is helping to lift our moods and keep our spirits up.  And Julia deciding to sleep through the night helped too!  I can't say that too loud.  If she hears me she will probably stop!

The day has arrived...

I knew this day would come eventually.  For the first month I absolutely dreaded it.  It made me sick to my stomach to think about it.  I agonized, dreaded and was anxious.  Then over the last month I have just come to accept that this day would finally arrive andt here was nothing I could do to change it.  Well, the day has come - Julia has lost a contact. 

I feel like I am handling it quite well.  I could scream and stomp my feet and go on about how life isn't fair - "Why Julia?  Why me?  There goes another 150 bucks we don't have.  This isn't fair."  But I'm not (well, maybe a little inside - but no complaining on the outside!).

I think I had prepared myself that she would lose some and to stress out is not going to make the contact magically appear.  She lost it somewhere at daycare.  I looked in her pack and play, the swing and the floor area where she plays.  I couldn't find it.  And since it isn't my house, I couldn't keep searching for hours and hours.  I had to let it go.  I just left - leaving instructions that if she found it to put it in the case I've left there.  I am not going to let a miniscule piece of silicon hydrogel ruin my day, my week or my life (or Julia's life).

I called the Dr. and he said he may have ordered a spare when he ordered the first one.  If he did, I can come pick it up tomorrow.  If not, he will order one.  We already had an appointment scheduled for Tuesday so we can get a new one then.  If she needs a new prescription on Tuesday, it will be under warranty and we can exchange it. 

I guess this is just part of the initiation into the "eye club."  Just one more thing to take in stride. 

I worry that she is going a few days without a contact and without patching.  The doc said that her eye will probably turn without the contact - and it really does.  She looks really cross eyed without it.  But again - nothing I can do.  I am choosing to remain calm and let this bump in the road roll off my back.  I may not do this next time, but for now. we are okay - even with a lost contact.

My new friends

Here is a pic of Kimberly, McCoy, me and Julia after our delightful dinner.  I have definitely found a new friend!

I am so thankful for all the internet "eye moms" that I've connected with!

When it rains...

Seems like life is a bit crazy again - okay, a lot crazy.  To start with, we had a hail storm yesterday evening.  Unfortunately it hit while James and I were shopping with the kids at Wal-Mart.  The hail was so big, it actually broke through the plexiglass skylights!  My poor car got a lot of damage.  The insurance adjustor is coming on Wednesday to make an estimate. 

Last night Jed would not sleep.  He kept coming into our room.  Over and over and over and over.  And repeat.  Eventually James slept in his room on the floor.  Hey, you do what you have to do.

This morning I noticed that Julia had some eye boogers.  I figured it was just from sleeping.  No big deal.  Well, during work, I got a text from daycare that Jed's eye was red but not goopy or watery.  Then I got another text that he had drainage from his ear.  So off to the doctor we went.  Turns out he has an ear infection and eye infection.  Our wonderful doc checked out Julia too and she also has an ear infection and eye infection.  Thankfully I had taken out her contact before we went because she had more goop in her eye.  I guess she gets a little vacation from her contact and patch.  This is her second eye infection since surgery.  It just seems that as soon as we all get well, the cycle starts over and the sickness just runs through the house.

To make matters worse, I was alone with the kids at the doctors so I went to Wal-Mart to pick up all their medicines.  They said it was going to take an HOUR so I wandered Wal-Mart with Jed and Julia.  They were out of popcorn chicken (Jed's favorite).  Then I noticed his diaper had leaked and soaked his pants.  So I had to buy him new pants to change into.  I fed him goldfish, oreos and lemonade as we wandered the store.  He was a mess with cookie all over him, snot on his face, goopy eyes and gunk coming out of his ears.  Then we waited and waited and waited.  An hour and a half later the prescriptions were ready but the insurance had denied them!  Twenty more minutes and it was worked out - but I realized I was THAT mom.  You know, the mom you judged before you had kids.  Before you had kids you saw the mom with the messy, wild kids that wouldn't stay in the cart and you wondered why she didn't control them?  I ask forgiveness for ever judging that mom - because I am now that mom.  With two sick kids who have reached the end of their rope - they were messy, snotty, crying and crazy.  But I finally made it out of there with two sets of eye drops and two sets of antibiotics!

On a good note, Julia turned 5 months on Thursday!

The other good news - Ortopad released their new patches!  And they have pink camo!  And leopard print.  There are new boys patches too.  I can't wait to order some.

You can find them here.

And last - just a pic of me and my babies.  I don't look the best, but I am happy.  They are my everything.





New Friends

I had the most amazing evening last night!  I was able to meet - in person - another mom of a kiddo with phpv!  I met her through this blog and found out she lives in my state (well, our state - since we both live here).  She is on the other side but her family lives near me.  She was going to be in town to visit family so we met for dinner.  The awesome thing is that her son is only 5 days younger than Julia - they are literally the exact same age.  So we are both in the same stage of this journey.

He was so very cute!  We talked about contacts and surgery, our fears of glaucoma and how odd it is that we have to pack contact cases and solution in our diaper bags with bottles and wipes!  I felt like I was talking to someone who really GOT me - who understood the fears, worries, concerns.  She had literally walked in my shoes and it was a connection I will always cherish.

I have met other great moms through blogs.  And while I don't get to see them in person, I can feel their support and know that I have great women to turn to for advice and a shoulder to lean on.  And I know that they GET it.

Eye moms are the best.  We are strong and resiliant.  We fight for our kids vision.  This war may be long and the battles rough - but we are going to see it through to the end.  I have to believe that when I put a contact in Julia's eye and she is screaming - I have to believe that I am doing the right thing.  When I patch her eye and she is grumpy and clingy - I have to believe that we will win this war in the end.  When I take her to the opthamologist and they put in drops and use a metal contraption to hold open her eye - I have to know that this is worth the fight.  That when she is 16 and has both eyes to see out of - that she will thank me.  I am going to do what is the very best for my daughter - even if it is hard, painful, heart-wrenching and difficult.  Cause that's what mom's do.

And Kimberly, the wonderful mom I met last night, she is doing the same thing for her beautiful baby boy. 

And a pic of us will follow - I was a goof and forgot my camera so as soon as Kimberly emails the pic of us and our babies - I'll post it!