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.

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.

 

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!

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...

Numbers

I love math.  It has always come very naturally to me (especially with my OCD personality).  Things that are logical and balance just seem to make sense.  So right now, when the numbers aren't adding up, my world seems off kilter.

36 - That is the number of weeks that Julia has been on this earth.  Take into account that she didn't have cataract surgery until 9 weeks of age and you are left with 27.  We have had 27 weeks to work on her vision.  Subtract another 5 weeks while we waited for her eye to heal and the contact to come in after surgery.  Take away another 2 weeks when she couldn't see because scar tissue had grown over her pupil.  Another 5 weeks to heal from the second surgery.  2 more weeks gone for this latest lost contact.  And probably at least another week from other lost lenses.  So do the math.  That leaves us with 12 weeks.  Julia has worn a lens and patched for only 12 weeks of her life.  And that is generous.  I really think it is closer to 8-9 weeks when you really factor in all of the lost contacts and take into account the two eye infections she has had.  So my baby has only been "seeing" out of her right eye 30-40% of the time. 

I'm starting to freak out a little.  20/20, 20/60, 20/200 - these are numbers too.  We don't have a number like this for Julia yet.  But I obsess over these numbers.  What will her number eventually be?  How can I get a better number if I don't have a contact and can't patch?

We are going on 2 weeks of no contact.  We lost the last one on vacation.  I called that day and had the doc order a new one.  Yesterday (Friday), I drove an hour to Children's hospital and paid 150 dollars for the new one.  Drove an hour home, looked at the pack and started to cry.  The lens was an 8.6 base curve.  Julia needs a 6.8.  More blasted numbers!  This is actually the SECOND time the company has made this exact same mistake.  The last contact we ordered came in as an 8.6 and I had driven all the way to Children's.  The doc had even put it in her eye when we realized it was wrong.  I know that very, very, very few people wear a 6.8 base curve.  It is extremely steep.  But seriously!  Twice they have made this same mistake.  And the doc specifically uses this company because they are one of the only ones that actually will make a 6.8.  The company is overnighting a new lens and it should be here Monday.  But I can't drive the hour on Monday and we will be in for an appointment on Wednesday so we will get it then.

I had really hoped we would have a few days of patching before this next appointment.  I wanted the doc to try and do some acuity tests with the lens in to gauge how much she is seeing.  I guess we will have to pop the lens in when we arrive, try to do the tests, then pop it out to dilate and do refraction.

I am worried that her eye is turning in and up.  I am worried that she cannot see.  I am just worried.  I don't want the IOL earlier than what is recommended, but I fear we are missing a critical window of vision development because we never seem to have a lens.  I have lost count of how many contacts we have lost - at least 6.  Longest one lasted a month, shortest one was less than 24 hours. 

No - he didn't hit her with the chainsaw!

So as you can see, lots of numbers keep floating through my brain.  I am anxious for Wednesday and her eye appointment (she also has an appointment with the ENT and a hearing test) but trying to enjoy the moment and live in the present.  I won't give up.  I can't give up.  But sometimes, in the smallest part of my brain, I lose it.  I cry and scream and fear that I am not doing everything I can for my daughter.  That I am failing.  I would move heaven and earth for her to see.  I worry that the one extra week of no contact is the difference between 20/20 and 20/50.  I just want what is best for my daughter and I feel like I am not doing that right now.

Vacation!

We are back from vacation!  It was a wonderful time with family - we truly enjoyed every minute.  I was nervous about taking Julia with her contact/patches, but it ended up being easier than I thought.  But more on that later...

We started vacation with a 5 hour drive to Springfield, MO.  We did have to stop for a super leaky diaper, but overall the kids handled the drive well.  We stopped in at the biggest Bass Pro in the country.  Jed had a blast looking at all the animals, especially the turtles and fish.  We bought a few things in the catalogue outlet portion of the store.  We ate at Hemingway's at Bass Pro.  The meal was crazy hectic with both kids starting to meltdown - but we survived.

Bass Pro in Springfield!

We then drove to our vacation spot - Stillwaters Resort in Branson, MO.  It was right on Lake Taneycomo and had a marina, 3 pools and a playground!

The next day we visited Silver Dollar City. 

Getting ready for a busy day!  This is the last patch of vacation  :(

Jed rode the "frogs" but didn't really want to ride anything else.  James had to "ride" with him.  I don't know what was more enjoyable, the look on Jed's face or watching my husband cram himself into a toddler ride!  He also enjoyed the huge ball pit with the "bang bangs" that shot the foam balls. 

Let's go!

While Jed napped in the stroller, Julia decided to shop for accessories.  After all, a girl can never have too many accessories!

Is skunk my look?  It is an animal print...

That afternoon, after coming back to the condo from Silver Dollar City - I realized Julia's contact was gone.  I could have sworn I checked her eye when we took her out of the car seat and it was there.  But we searched the entire floor and couldn't find it anywhere.  I had my two minutes of tears and proclaimed that I wasn't upset about the contact - just upset that we can't seem to find one that stays in.  After my two minute meltdown, I realized there was nothing I could do and decided to just enjoy the rest of my vacation.  All in all, it ended up being an easy week because we didn't have a contact so we couldn't patch.  I didn't have to take it in and out for swimming or anything.  I guess that is a silver lining to a lost contact.

The next day we had fun at the the marina and swam in the lake.

Jed is under the hat - I promise!

See!  Told you he was there.

 Jed went for a ride on the wave runner (don't worry, it was really slow). 

Getting ready to ride!

Headed out for some fun.

All finished.

Julia stayed with grandma in the condo.  When we got back from the marina, Jed was so tired that he fell asleep during lunch!  He was one tired boy.

Sandwich, chips, and a nap.

Later that afternoon we hit the pool.  Jed LOVED the pool and had a blast.

Fountain!

Playing in the water.

Splish, Splash!

Can I sit on it?

Under the water fall!

Lets go under again!

A little waterlogged, but still swimming!

Julia napped (which seemed to be her favorite thing to do on vacation).

Can't sleep without a lovey (AKA burp rag).

On Saturday we visited the Branson Hatchery.  Jed was able to see millions of trout in all stages of growth.  He loved feeding the fish and walking along the tanks. 

My boys.

Headed to the hatchery!

Feeding the fish.  See them splash?

I wish I could touch them.

I need more fish food!  (yes, that is Julia's sunglasses case that we used to hold the fish food- came in handy!)

Eat fishies!

Julia slept, as usual.

She was thrilled with the hatchery.

More swimming in the afternoon and then a yummy dinner with the family.  Jed tried the slide, but wasn't really thrilled.

I tried to get a good photo - but this is it.  Jed and James coming out of the slide.

Not a fan of the slide.

Jed and his cousin Elliott had a blast building forts in the condo.  Staying with my sister and her two kids was fun, but made nap time for them a little difficult.

Where's Jed?

Right here!

 

And then we had to drive home.  Jed and Julia slept most of the way, but Jed was really crabby.  So we let him watch Bubble Guppies over and over.

So thankful I have a Kindle Fire.

My view of Julia during the drive.

Overall, a great vacation.  We made amazing memories as a family.  Jed had a blast and seemed to truly enjoy every moment.  His favorite souvenir - his "bang bang" from Silver Dollar City. 

I hope he realizes I ran through 3 parking lots, in the rain, to get this "bang bang" for him.

Now that we are home, it is back to laundry, dishes, cooking and doctor appointments.  I have an eye appointment this week to pick up my contacts and glasses, Julia has a pediatrician appointment and an appointment with MOSpin with MO School for the Blind.  Next week she has eye and ear appointments at Children's.  We also need to get another contact - so hopefully Dr. H ordered one when we called. 

We had Julia's IFSP meeting before vacation with her OT and case manager.  They are both really pleased with her progress.  Her new goals mainly surround feeding (using a sippy cup, straw, and self feeding) and fine motor skills.  She is caught up with gross motor and will probably walk in a few short months (no, no, no...my baby cannot be big enough to walk!).  She will continue to receive OT once a month.

Summer is almost over.  But it certainly has been fun!  Next year we are going on a cruise - can't imagine what that will be like with a 3 year old and an almost 2 year old!