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...

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!

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.

No, no, no...

 NO GLAUCOMA!!!!!


No time to upload pics or anything, but I want to shout from the rooftops that Julia does NOT have glaucoma!  Pressures are normal, optic nerve is not cupping, and measurements are great.  Doc said that they are not sure why her eye grew so much in such a short time - but I know why.  Prayer.  We have been praying for her eye to look normal and be as healthy as can be.  And her eye grew and is healthy!  Her EUA went great!

Doc said that for having PHPV her eye looks as good as it can.  We caught the cataract early, we are patching, staying on top of everything - she looks great!

We discussed the problems with contacts and the surgeon feels we should see how this next contact fits and then possibly discuss doing the IOL sooner than later - possibly after she turns a year old.  It is something we will need to discuss more, but I am hopefull that he thinks she is a candidate for an IOL!

Ear tubes went in great - she had pus in her ears when they drained them so it is a good thing we did the tubes.  She was crabby when she came out of anesthesia but very happy to get her bottle!  She was a trouper all day - even when she was hungry.

I am so thankful for all my friends and family who pray for Julia and send us good thoughts.  We so appreciate it!  We know we still have a long road with lots of patching and contacts, but we are thankfull for the good news today.  We are going to celebrate this victory!