Pumpkins and Patches

So Halloween has come and gone, and we had a great time.  We went to the pumpkin patch last weekend and picked our pumpkins.  They were carved and put on the porch.  And for Halloween, we went trick or treating and enjoyed a lot of chocolate!

At the pumpkin patch!

Jed rode the pony!

Picking a pumpkin.

Jed with the pumpkins.

Scooping out the guts.

Carving pumpkins.

Jed was Tigger.

Julia was a pumpkin (for about 5 minutes)

Finished product!

 

 

 

And now that the festivities are over, it is time to head back to reality.  We've been having a bit of a rough time with Julia and her glasses.  I was convinced that she could see better with them on, but I just couldn't convince her of that fact!  We were having trouble keeping them on her face.

 

I love my glasses right now!

 

Eventually, she took them off and broke them.  If you notice in the pumpkin patch pics, she isn't wearing glasses because they were broken.

 

Definitely broken.

 

When she broke them the first time, we went ahead and ordered her some miraflex glasses.  Good thing we did because a couple weeks later she really broke her glasses!  The miraflex actually arrived the next day so we went and picked them up.

 



My new specs!

 

We still have trouble keeping them on, but she wears them more than she would wear the wire frames.

 

They are on...

And they are off!

 

 

Julia saw her eye doctor on Nov. 1st.  First we did the Cardiff test to check her acuity.  She didn't enjoy being patched for the test, but she seemed to respond to the cards.

 

Then we visited with Dr. Hoekel.  He said that her acuity was better - one line better in each eye, which brings her to 20/80 in the left and 20/300 in the right.  He also noticed that her eye is MUCH straighter with her new glasses.  He checked out the glasses and then looked at her eyes.  He was impressed with how she is using her eyes and wanted to dilate her eyes just to double check that nothing had changed.  So before he put in the dilating drops, he tried to measure her pressures but she was crying way to hard. 

 

After her eyes were dilated he double checked her prescription and it hasn't changed at all.  She is steady at +6.00 in her left and +13.00 in her right.  We talked a lot about our options and he thinks that we should continue with the glasses for now.  Even though there is still a substantial difference between both eyes, it seems like she is trying to use them together and she is definitely seeing better in the glasses.  I asked if it would be better to go back to a contact in the right and keep the glasses on the left.  He said that he had thought of that too, but since her eye is staying so straight with the glasses, he wants to continue using those.  It seems that her visual system is trying to reach a state of "balance" with her left eye becoming a bit more farsighted as her right eye is decreasing.  He did predict that her left eye will always need correction - but I knew she would need glasses anyway, so that wasn't a big shocker.  He is going to run her information by the surgeon, just to get an opinion and see if he would do anything differently.

 

We also talked about the future.  He said that we will just take it one appointment at a time.  He said we will probably introduce bifocals around age 2 when she gets bigger glasses.  Right now he sets her focal point in her right eye at about 35 cm.  So anything farther than that is not in focus.  Bifocals will allow her to see both near and far since the lack of natural lens prohibits her from doing that adjustment on her own.  He also said that we may do the IOL at age 2, but that if her eyes continue the way they have been, she may not need the IOL!  If her prescription in both eyes ends up pretty close in numbers, the IOL will actually cause more problems by correcting the right eye while the left is still needing lenses.  I told him that would be great - that I wanted to wait as long as possible anyway for the IOL.

 

The only bummer is that we are starting patching again.  I expected this, but I am nervous about her wearing glasses and a patch.  We are patching 2 hours a day.

 

So overall, this has been the best appointment!  I always am so anxious and wound up going these appointments and have learned to anticipate bad news.  So it was great to get some good news and feel positive about the future!

 

 

 

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.

 

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!



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.





Google is not always your friend

After the appointment with the Eye Clinic, I started googling everything I could about PHPV and cataracts.  It was awful.  There is very little information out there about PHPV and most of it is pretty grim.  I read about micro-eyes, prosethic shells, blindness.  It made me crazy!  However, I did find some wonderful blogs from other moms that helped me put things into perspective and realize that I would adjust to this new "normal."  I found cute patches and tips for putting contacts in infants.  But deep down I was petrified.  I was afraid of what they would find in surgery - would the retina be okay, would she be able to see?  These questions wouldn't leave me.  I basically ran on auto-pilot for the week in between her doctor appointment and the surgery.  So my advice to others - limit your google!  Not all the information applies to you.  Take what does and forget the rest!