Glasses

Julia's glasses have arrived.  I'm not going to say that it has been easy, but "fingers crossed" she is adapting well.  She still will take them off her face if she is not playing or she is tired, but it is going better than I've expected.

 

And the best thing is - I really think she can see better with these glasses.  She is grabbing for my face when she looks at me like she can actually see my face.  It brings tears to my eyes to watch her stare at things because I really think she is seeing more detail than she ever has.  I am praying that she is using both eyes together too.  We head back to the doc on Nov. 2 to see how her acuity is and how things are going with the glasses.  So right now I am just enjoying no patches (yeah!) and no contact (yeah!).  Here are some of the things I won't miss this month:

 

 

 

 

She is trying to get a cracker in her mouth while wearing mittens!

 

And now, just for fun...a few pics of our life.

 

Glow sticks in the tub with the lights off.  Try it - so fun!

 

Here is what it looked like with the lights on!

 

 

Setting up his microphone.

 

Singing!

 

And can you believe it - Julia's birthday party is tomorrow!  My beautiful baby is going to turn one on Monday.  It is definitely bittersweet.  I'll post pics of the party as soon as I can.

Not following the rules

It is mid-week, so I don't have time to upload any pics or anything.  But I need to unload/vent a little so I figured I'd give everyone an update.

If you remember, we had a crummy visual acuity test a month ago.  20/400 in the right and 20/100 in the left.  Doc was surprised, so we went back today for a follow up.  After lots of looking, dilation, and more looking - the verdict is in.

Julia's left eye is getting worse and her right eye is getting better.  Go figure.  It isn't "worse" and "better" in the normal sense, but I am not sure how else to describe it.  Basically, her left eye was a bit farsighted, but not anything out of the ordinary for an infant.  It was around 4.75 in June.  In July, during her EUA, it measured 3.75, so the doc figured she was growing out of it.  Today it measured 5.75.  Her right eye's prescription has decreased to around 13.00 and we started somewhere around 25.00 in January.

The doc is actually puzzled.  He has never had this happen and said that in all the books on refraction development, it does not describe this scenario.  It is almost as if the eyes are trying to "equalize" and meet at the same prescription.  Yet that really isn't possible when they are so far apart.  He took a long time to try and explain what "normally" happens and what is happening in Julia.  We talked about the nystagmus and the strabismus as well. 

The good news is that she is trying to use both eyes together and may be able to develop some binocular vision.  That is encouraging.

So for now, we are ditching the contacts.  Well, we will ditch them when her new glasses come in.  Doc wants us to try glasses with the correct prescription for each eye.  Since her prescription in each eye is getting closer together, he thinks the glasses may be a good option.  Hopefully with correction her eye turn will get a bit better, along with the head tilt.  He gave me the option of getting bifocals for her aphakic eye, but we thought it would be better to get her used to glasses first, before we add in the bifocal.  We are also going to stop patching with the new glasses.  We see him in one month to check acuity and everything again to see what we need to do next.  He also is going to share his findings with her other doc to see if he has any other suggestions.  I think my daughter has really stumped him!  This is a little scary as I just want her to develop "normal" vision and follow the "normal" path for kids with cataracts, but she just can't seem to do that. 

I will admit, I was a bit stunned and overwhelmed with the appointment today.  We just can't seem to go to an appointment and just have a "you look great - keep going" as the result.  I guess I just want answers and want to see into the future and make sure this all turns out okay.  Now I just have to figure out how to keep glasses on her.  I guess it can't be any worse than keeping on the patch.

And I can't believe she is turning one in less than two weeks!  Where has the time gone?

And the results are in

And they are not what we expected.  I knew that Julia's right eye would not have "normal" vision.  I expected a number like 20/200 (which is legally blind).  I had steeled myself to hear that and be okay.  I figured the left eye would come in somewhere at 20/40 or so.  Her left eye is a bit farsighted, but at the last appointment we decided to wait on glasses because we were hoping she would grow out of it.  So I finally got a call with the numbers and...



20/400 in the right eye

20/100 in the left eye

I was stunned.  I had never expected her left eye to be that impaired.  We are counting on her left eye to be strong and healthy so that if we never attained good vision with the right, well, we could count on the left.  Now her "sound" eye (as the doc calls it) isn't seeming so sound.

Even the doc was surprised, which sparked great anxiety in me.  I didn't understand how my baby's vision is so terrible but she runs around like a maniac!

To make matters worse, we had a terrible incident with her on Sunday.  Jed accidentally ran into her and she fell straight back onto her head.  She immediately started screaming, but when I picked her up, she stopped.  I figured she had calmed down, but when I looked at her, her head was tilted back and she wasn't breathing.  Her eyes rolled back in her head and she went limp.  James started screaming her name and I froze.  After blowing in her face and even puffing air into her mouth, she started screaming.  She cried and cried, but was lethargic and sleepy.  So we immediately went to the ER.  Of course, by the time we got there, she was acting completely normal.  Docs said that she probably was so stunned that she tried to take a long, deep inhale but got "stuck" and held her breath.  She didn't have a concussion or anything so we came home.  It was the scariest moment of my life.  Scarier than handing over my baby to a surgeon, scarier than learning about phpv and cataracts, scarier than anything I have ever experienced.  I keep seeing her image in my face and it tears me up every time.  I thought I was going to lose my baby in that moment, and it was too much.  I couldn't take it.

Well, that incident, on top of the new vision information has set my anxiety on edge.  I am by nature an anxious person and always feel better if I can "do" something or "fix" it.  Well, I can't fix this and it makes me crazy.  I'm walking around with a ball of nerves in my stomach feeling like I am constantly filled with adrenalin.  It is a horrible feeling and I'm not sure what to do (short of becoming a zombie on a ton of anxiety meds!)  So I text some imoms and realize I'm not alone.  Read some other blogs and know that other families are facing the same challenges.  Talk to my husband and my mom and accept that I am a great mom that is taking care of her baby in the best way she can.

So, after emails with the doc, contacting First Steps about more vision services, and lots of tears - I have done all I can.  We are seeing the doc Oct. 2nd (perhaps earlier - he told me to call his nurse to get squeezed in) and he is going to do the Cardiff test himself to make sure the numbers are right.  And we will go from there.  He is also going to go over the results with the surgeon to see if/when we should do the strabismus surgery.

There is a bit of good news though.  The fabulous nurse, Tracy, from the Eye Clinic called and said that Julia's back up contact was in.  The company sent a three pack (so we have three back ups!) and the cost is only 90 dollars for all three!  I don't know if this is an apology for messing up so many lenses or their normal bulk price, but it is great.  I can't figure out how one lens is 150 and three are 90, but whatever.  Maybe they made a few extra and since they are custom and don't really sell that size they are discounting it.  Who cares - I get cheaper lenses!  But wait, it gets better...



The doc emailed me and he spoke with our insurance and they are approving the lens!  So I am getting three lenses at no cost.  That made my day.  Gave me just enough boost to keep going.  So we will get up tomorrow, put the contact in, collect our patches, and go about our day.  One day, one patch, one contact at a time...we will do this.

Testing

Just a quick post.  It seems like I never have time to blog anymore now that school is back in session.  Mornings are crazy with getting ready, putting in Julia's contact, and loading kids into the car.  Afternoons are playing, cleaning, cooking, bathtime.  I wouldn't trade it for the world.

Julia had her first visit with the vision diagnostic tester.  It is sort of like an audiologist that does the fancy hearing tests, but this one was for vision.  We sat in this little plain room and she held up all kinds of cards for Julia to look at.  They were in sets of three - and it would have the same pic on each card, just in a different spot (top, middle, bottom).  The cards were gray and the pics were just white outline drawings.  Each set of three had a different pic (a train, fish, apple, etc).  I just held Julia while Jackie (the diagnostician) got her attention and kept going through all the cards.  We did her right eye, then her left, then her right again.  It was hard with her right eye because her nystagmus is really bad when she is patched (nystagmus is when her eye "jumps") and she has to really turn her head to get her eye in just the right spot to be able to see.

So how does this tell us anything about Julia's vision?

Apparently, the white outlines on the cards get thinner and thinner.  So at some point Julia is unable to distinguish the pic from the gray card and will stop looking at the pic or following it as it moves from top to bottom when she flips the card.  Pretty neat trick if you think about it.

Then Jackie got out a fancy camera and had me hold Julia's head straight to get some pics of her alignment.  She also took some pics with her natural gaze (with her head tilted).

So the info will all be sent to her surgeon and vision doc and we should have results in less than 2 weeks.  I am anxious to find out how much Julia can see.

In more fun news, we finally had Julia's baptism.  She looked so pretty!  My baby is getting so big.  And, I won't say this too loud, but Jed is doing really well with potty training.  Life is good here!

 

 

Inches

How do you measure life?  Is it in inches, miles, minutes, hours, weeks, years?  Is it sunsets or tears?  Is it patches and contacts or smiles and hugs?  I'm not really sure.

According to the fabulous Dr. H - life is a yardstick.  Okay - I get that concept.  Struggling with contacts is only going to be an inch of the yardstick.  Not a lot when you look at the perspective.  I guess he is right.  But sometimes that inch feels like a mile when you are fighting a mere 12.5 millimeters of plastic (or whatever contacts are made of).

We are told to get through this "inch" and we will look at an IOL around age 2.  Then we will only have to worry about having the right prescription, patching, and strabismus (his words, not mine).  So basically we still worry about everything but the contact.  I guess that is an improvement?

So we will inch along.  The contact is an amazing fit according to the doc.  It is just the right prescription and keeps her in great focus.  It is staying in a bit better (I probably just jinxed myself).  We only have to patch 2-3 hours a day which is a huge sigh of relief.  We've started putting socks on her hands during patch time so she won't rip the patches off.

She will have her first "vision test" next week.  She will be doing the lined card test to try and get an estimate of what she is seeing.  I am excited and nervous about the whole thing.  And then back to Dr. H in November for dilation and refraction on both eyes.  Hoping and praying the farsightedness in her left eye has started to decrease so we don't have to get glasses for her "strong" eye.

I think my life is measured in school days.  How many are left to Thanksgiving break, Christmas break, spring break and finally summer.  I miss my kids when I am at work.  I love my job - love the challenge, the students, my co-workes, but miss my kids.  It is hard when the one thing you have to do to provide for your kids is the one thing that takes you away from them on a daily basis.

Jed's life is measured in stickers and m & m's.  Stickers & m's for going on the potty.  Potty training is not a cup of tea, but we are doing okay.  I also think he measures life in episodes of Bubble guppies.  23 minutes and then it is time for something else.

 

Julia measure's her life in patches.  How many patches to get through patch time.  And after that it is smiles.  It is millions of smiles as soon as the patch comes off. 

My husband is measuring life in days till deer season.  His favorite time of year is just around the corner and he is as excited as a kid before Christmas.

I think the trick is to measure looking backward.  I don't want to rush time along and miss a moment.  I don't want to live always waiting for a better day or for something to change.  I want to savor every second and then turn around and measure the past - and find that it is measured in wonderful memories.

 

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!