One of those days...

Today was one of those days.  You know, a rough one.  A "fighting back the tears" kind of day.

It started this morning when I dropped off the kids at day care.  Julia got a new contact yesterday and so today was the first day in a week that she had to patch.  So I put the patch on as we got out of the car (no use in putting it on before - she will just rip it off) and I carried her in.  I handed her over to Barb and she didn't blink an eye.  No tears, no reaching for mommy, nothing.  As I walked away I realized she wasn't fussing  because she couldn't see me leave.  She didn't know I was gone.  The patch covered up her window to the world and she was content - safe and secure in Barb's arms (but not my arms).  And while this is a blessing - it is hard to leave a crying baby in the morning - it also made me very sad.

You see, every once in awhile the reality of our situation hits me in the gut.  Usually I focus on the great life we have, how blessed we are, on how things could be so much worse.  But today - I couldn't see that.  I grieved.  I wept for my beautiful baby who spends half her day in a blurry world.

I went to work and focused on my students.  It was a normal day until about 11 o'clock when I got a text from Barb.  "Julia has been through 6 patches.  Do you have any suggestions?"  All I could tell her was that I'm sorry.  She didn't sign up for patches and contacts when she started watching my son 2 years ago.  I suggested distraction and arm restraints.  Thankfully, she is a saint and said she would just keep putting them on - she didn't want the arm restraints.

And again, it hit me - this is real.  It is happening.  My little girl is at day care with a patch.

So I pick up the kids.  Best part of the day.  Jed runs to me crying out "mommy!"  And Julia toddles over as fast as her chunky legs will carry her.  Barb hands me a contact case and tells me her lens fell out at 12:30.  Two hours before patch time was even up.  Before I could even think, the words were out of my mouth.  "I can't take this for 7 more years."  Barb was supportive and loving (which is why my kids love it there). 

And for the third time - my chest sunk in and my heart dropped to the floor.  I am tired.  Tired of contacts, patches, searching with flashlights, checking her eye every 5 seconds and trips to the eye doctor.  I didn't sign up for this.  I was drafted against my will.

But I'll do it.  For my beautiful Julia, I'll do it.  I may cry and scream and yell, but I'll do it.  Because in the end - it is her.  It is all about her.  And she is worth it.

Watch out world...

...Julia can walk!  She took a few tentative steps a couple weeks back and now she is more and more adventurous.  She will walk across the living room from the chair to the couch.  And then she grins.  She knows she is cute and she works her charm.

I wasn't prepared for her to walk.  I really hoped and thought she would take her sweet time.  She waited longer than her brother (stinker walked at 8 months old!) but not as long as mommy hoped.  10 months is still too early.  She is still my little baby - she shouldn't be able to navigate by herself yet!  She only has one little tooth and looks very baby-like still.  She shouldn't be toddling about.

She won't really walk when she is patched, but once the patch comes off - she is a pro.

In Eye news - we've lost another contact.  This one lasted three weeks.  It stayed in great for two weeks and then started falling out daily.  Friday it fell out at daycare and is no where to be found!  Thankfully I ordered a back up two weeks ago and it should be in any day.

I am also back to work.  It is a rough adjustment for all, but we have survived and are getting into the swing of our new schedule.  Both kids cried when I left daycare on Wednesday, but they are doing better about drop off now.

I'm excited for fall, cooler weather, sweaters and pumpkins.  Julia's birthday is quickly approaching (where did the time go?) along with her baptism and Halloween.  It is going to be a busy season!

Let the games begin!

It is Olympic season so all the news and websites are screaming with stories of athletes and gold medals.  I have to admit that I have watched very little of the Olympics.  I have very little TV time and reserve those precious moments for high quality shows like Teen Mom and Project Runway (which is a whole different post- my addiction to reality TV).  And who needs the Olympics when I've got a great game to watch in my own living room.  It is similar to training for a marathon only instead of a gold medal, my daughter wins her sight.  Yes folks, the Patch Games have arrived!

First patch of the day.

Now that we finally have a contact, we are patching again.  And we are patching more.  Julia has to patch half of her waking hours, which equates from 6 am to 2 pm (can't count nap time!).  And the game is keeping the patch on!

And it's off - in 3 minutes.

She rips them off very quickly and you have to constantly keep her occupied and her hands busy.  Sometimes I feel like we are training for a marathon and the training is wearing this patch.  It is hard and painful for her (just like training) but it is necessary and the rewards are great.

Second patch.

A lot of the times I feel bad making her patch.  I know that it is for her good and I know that the result will be great (who doesn't want to see their kid stand on the podium and get a gold medal - or get a driver's license and pass the vision screening).  But times when she is fussy, teething, or has a cold - I don't want to do it.  It is like training with an injury.  She already doesn't feel good and I am putting an icky, sticky patch on her face.  She rips it off and in my head I tell myself, "Let's just give her a little break, just a short time."  But I know that will make it worse so I put a new patch on immediately.

I don't need this patch.

It is such a dilemma - making your child do something uncomfortable because you know it is good for them.  I just wish I could make her understand.  Kids are instant gratification - they don't get that this is going to be great in 15 years.  They can't see 15 seconds ahead.  Forget the fact that she is 9 months and doesn't understand what I'm saying anyway!

This is actually the 5th patch - we lost 2 on car rides and one during nap.











I wish she could tell me what it is like.  I wish she could explain to me what she sees.  Does it give her a headache?  Does it make the world spin?  I want to know what it does to her when I put that little patch on.

Not keeping it on!

Maybe if she could explain it to me I could help her find a way to keep it on.  Or at least comfort her better.  In the meantime, I guess I will just order more patches.

We just keep trying!



More contact drama

Julia and I have really bad luck.  Well, at least when it comes to contacts.  If you read my last post, you saw that the contact company had screwed up AGAIN and sent an 8.6 when Julia needs a 6.8.   They assured the Eye Clinic that they were overnighting a new one and it would arrive on Monday.  No problem.  Doctor appointment is Wednesday.  We will pick it up while we are there, have it checked, voila - no problem. 

I get a call from the Eye Clinic this morning.  No contact.  They can't find it.  Can't get a tracking number because the company is in Colorado and an hour behind so they aren't open.  I started crying and told them I was coming to the appointment anyway because I had questions for the Doc.

It was an emotional appointment.  Dr. H was so very gentle and explained everything with grace and support.  I had my list of questions (again!) and he patiently answered them all, even when it was answers he knew I didn't want to hear.

So apparently an eye floating up is normal in aphakic kids.  The brain can't comprehend the dissonance between the images and to make it bearable the eye "floats."  Hopefully it will be corrected with the contact. We will look at surgery for the eye crossing and floating up if it is doing it more than 30% of the time with the contact in.  He explained that any kiddo with a prescription over +3 is going to have an eye cross when they don't have glasses or contacts.  So when you get into prescriptions like +19 (what Julia's is) there is going to be crossing!  Hopefully some extended time wearing her contact will help.

Julia's eye also "jumps" when she is patched and I thought it was her trying to focus.  Nope.  It is nystagmus - also common in aphakic kids.  He explained something about her eye not being "fixated" like yours or mine because she didn't have visual stimulation those first months.  I didn't quite understand - but did understand that this is just another part of the package. 

The head tilt is also part of the package.  She is trying to have things in her field of vision in her left eye so she can see them.

We went over the numbers from the EUA and everything looked good.  Her cornea is super, super steep (which I already knew) but he compared her number to a normal person and I was surprised.  Probably explains why a contact don't stay in (think of trying to keep a beanie hat on a pointy head versus a flat head).

He understood my concern with the difficulty we are having with contacts.  He agreed that her being in a lens 50% of the time is not acceptable.  He suggested we give this next contact a shot and if things aren't improving we will talk with the surgeon about implanting an IOL early.  There are risks of complications with IOL's, but the benefits of constant correction in her vision outweigh the risks at this point.  I am also going to invest in some backup contacts (a hefty investment) so that we can have several spares at home.  That way, if they keep falling out and getting lost, we have another one ready and don't have to wait weeks for a new one.  It isn't ideal, but it is what we need to do for now.

We also are increasing her patching time.  She will now patch half of her waking hours.  It is going to be a challenge, but it is so necessary for her to have good outcomes.

He carefully told me that he is not giving up - his job is to bring her vision into focus and keep it in focus and he was going to do that.  He also assured me that I was doing everything right - this was not anything I could control.  I really needed to hear that.  I was having a "mommy guilt" day and was feeling like I must be doing something wrong and I was failing my daughter.

We go back in 4 weeks.  The contact should arrive in the office tomorrow - so I am picking it up on Friday.  If it seems to stay in, I am going to call and order the spares.

In some good news - Julia had a hearing test and passed with flying colors.  I cracked up during the test because she was sitting on my lap and they would say her name through the speakers to get her to turn her head.  When she turned her head, these toys would light up and make noise.  She was exactly like Pavlov's dog and everytime she hear a sound, she whipped her head to the side to see the toys light up!  Hilarious!

No pics today - don't have the time or energy.  But definitely will put some up before I go back to work in a week and a half!  Ack!  The summer is almost gone...