You know you're an "imom" when...

So some of the other great moms that I have connected with online have coined a term: imom.  Moms who are dealing with intense eye issues in their little ones.  We are versatile and up to date like an ipad, provide memory and entertainment like an ipod, and we deal with eyes so we are the mighty "imoms."

So I have compiled a little list.  You know you're an "imom" when...

1.  You choose your child's patch to match his/her clothes.  I mean really, to my diva, the patch is just another accessory to work her style.  When she gets older and can choose herself, I'm sure it won't match, but for now - we color coordinate for the most stylish looks.

Lady bug patch, lady bugs on the dress.

Pink and orange patch, pink and orange outfit.

This one is older, but note the black/white animal theme she is sporting!

2.  You have some sort of bin like this:

Patches, saline, cleaning solution, cases and even milk of magnesia for those pesky patch rashes!

It may be a drawer, a countertop or a bucket - but you have a centralized spot for those fun eye supplies. 

3.  You may also have a container like this:

Drops, drops and more drops.  And a few extra cases and some eye shields.

Again, it may be a bucket, drawer, or counter - but you know you are an imom when you are a stealth bomber when it comes to putting in drops.  If a random stranger watches you put in drops at daycare and comments on how easily you can administer drops and how well your child tolerates them - then you know for sure, you are an imom.

4.  You probably have something like this in your diaper bag:

A pretty way to carry a spare contact case and solution!

If your diaper bag has contact cases, saline solution and random spare patches - you might be an imom!  (I never thought contact solution and cases would be necessary in my diaper bag - it definitely wasn't on the registry list I saw before my babies were born...maybe I need to inform Babies R Us that they need a diaper bag with an "eye" compartment.)

5.  You probably have this in your diaper bag too:

Spare glasses.  She won't keep them on, but we at least have them as back up.

Nothing worse than losing a contact when you are out an about.  A smart imom keeps a spare set of glasses in the diaper bag.  Even if said glasses will never stay on the child's face for more than a nanosecond - the imom feels better about having the glasses and carrying them around.

The glasses are on...

.05 seconds later...

Here mom - I don't want these (note the matching patch!).

6.  Everywhere in your house you see this:

Yep, that is a patch on the changing table. 

If you find patches stuck to tushies, on the couch, in the swing, and even on the bottom of feet - you are definitely an imom.

7.  You have a stash of these:

Flashlights.

Every good imom knows that the best way to find a contact is to shine a flashlight everywhere and look for the "sparkle."  You also know you are an imom when your 2 year plays with the flashlights and says "find the contact, find the contact."  Or he constantly tells his sister "stop rubbing, stop rubbing."  Such a good "ibro" helper.

8.  You have toys like this:

Flashy toys.

The "shiny" imom knows that patch time is better with flashy, loud toys.  The brighter and louder, the better.  (That star actually blinks and suction cups to the wall - spectacular!)

9.  This is only for the hardcore imoms.  Those with particularly stubborn kids (or drugged up kids after surgery:

Can you guess what it is?

Extra patches, but something else.  It is fancy, fun elbow splints!  In all seriousness, most kiddos don't have to resort to elbow splints to keep the patches on.  But Julia was rubbing, rubbing, rubbing after surgery and these splints were the only way to keep her from damaging her fragile eye.  We are keeping them "just in case" we hit a rough patch. (get it - rough patch?  I crack myself up.)

10.  You use acronyms like "PO" or "EUA" and expect everyone to understand you.  The words strabismus, esotropia and amblyopia are not foreign languages, but words you actually know and understand.  You know what the normal eye pressure is for a child.  You know you are an imom when you scour the internet for information because you want only the best for your baby.  You cheer on other imoms when they have victories like low pressures at a PO visit and you cry and pray when these fellow warriors find out their babies need surgery. 

11.  Last but not least...

You might be an imom if...you are the strongest person your friends have met.  All the imoms I know are the strongest, most amazing people on the planet.  They swaddle their babies and put contacts in their eyes.  They have to put a sticky, icky patch on their kids everyday.  They might be crying inside, but on the outside they smile and kiss that patch and tell their kids how courageous they are.  They go to countless appointments and hold their screaming babies while doctors shine lights in their eyes.  They check their baby's eye every 5 minutes for the elusive contact.  When the contact is not there, they gather the flashlight and search and search and search.  They've been through surgeries, EUA's and other traumatic experiences.  They fight to keep the patch on, keep the glasses on, keep the contact in.  They fight the battle on a daily basis - and they are fighting to win.  You see...imoms are not fainthearted.  They are not fighting for a trophy, a ribbon or even a cash prize.  They are fighting for their kids to be able to see.  And that is the best prize of all. 

So if you identify with even one item on this list - consider yourself an imom.  And know that all across the planet (even though you don't see them) are other imoms that are fighting the fight.  We are fighting together and we will win this war.  We may lose some battles along the way - but in the end, the war will be won.

Happy Father's Day! (and some potty training too)

Happy Father's Day (belated) to all the Dads out there.  James is an amazing Father to Jed and Julia.  He is our protector, provider and brings fun to our lives on a daily basis.  Can't imagine life without him.

Dad sleeps while Jed plays.

Jed and Julia decided to make some "flowers" for Daddy for Father's Day.  (Really, I made them do it and they were not really thrilled with having paint on their hands and feet - but we got it done.)

This is about as creative as I get.

We had a quiet Father's Day at home - just spending time together.  On Monday we started the dreaded...Potty Training!  Yikes, it is tough.  We had tried a month ago and it was an epic fail.  Jed has been showing more signs of being ready so I figured I would give it another shot.

Potty training requires juice, towels and underwear!

I was a little worried about the carpet!

So it is going okay.  Having some accidents, but also going on the potty.  He is pretty excited about his Mickey Mouse underwear and getting a piece of candy when he goes.  I hope the excitement lasts long enough to get him fully trained!

This is what Julia was doing while we frantically ran to the potty every 15 minutes:



8 months is definitely not too old to nap in the swing!

So life is hectic but good.  Julia's contact is still popping out on a daily basis, but I am just trying to deal with it.  Her EUA is tentatively scheduled for Tuesday, June 26th.  She'll have tubes put in her ears during the procedure as well.  Other than that, we are just enjoying our summer!







Enigma

Enigma: 

a puzzling or inexplicable occurrence or situation

Yep, that describes Julia.

So we saw the eye doc today.  Good ole' Dr. H.  He's been with us since the beginning and I really do trust him.  I showed him the prescription the "second opinion" doctor got and he was surprised that it was so low.  It has only been 6 weeks since her prescription has been checked.  I also got to ask a lot of questions:

When can she get an IOL? 

"Usually 20 months or older - unless she is having contact issues."

Can she swim in her contact? 

"She can, but it risks some pretty nasty infections, so I would take it out."

What about the eye cross? 

"Unfortunately that happens in 90% of these cases.  I keep note of it in her chart and eventually she'll need surgery to fix it."

How much do you think she can see? 

"Not sure.  Anywhere from 20/60 to 20/400 in her right eye."

So then he checked her prescription, and sure enough, the other doc had it right.  In 6 weeks her prescription has changed 10 diopters!  That is drastic and shocking.  And her left eye, the non-phpv eye, is getting a 4.5 prescription as well.  So she is farsighted in that eye. 

So now what.  Well, the drastic change is concerning.  It could be that she had an amazing growth spurt and her eye really, really grew.  OR, it can be a sign of glaucoma.  Because high pressures can cause the eye to swell, the eye would measure bigger and need a lower prescription.  We couldn't get good pressure readings in the office so now she is being scheduled for an EUA (exam under anesthesia).  Basically they are going to take a really, really good look at her eye, measure everything and see if anything is wrong.  And the ENT is going to bop in during the EUA and put tubes in her ears while she is already knocked out.  I'm not thrilled about my baby being under anesthesia for the third time, but I knew this would be needed at some point.

The doc said he was shocked at the change and that Julia isn't following any normal patterns.  She is a trailblazer - yes she is!  Normally the patched eye will become nearsighted from being patched, hers is now farsighted.  We are holding off on glasses for that eye to see if it starts to normalize on its own.  Apparently it is quite common for infants to be nearsighted or farsighted and it will change as they grow.  If hers doesn't start to correct itself, we will have to get new glasses.

We got another new contact (he had some spares in the office) and we are going to continue patching and wait for the office to call with her EUA schedule. 

So keep us in your prayers.  I am hoping and praying she doesn't have glaucoma.  The thought is too scary to entertain for more than a moment.  Glaucoma has a risk of losing vision because of  damage to the optic nerve.  We aren't sure of the next step until we know what is going on with her eye. 

Second opinion

Julia saw a new PO today - he was terrible. He was pretty rough with her and actually jammed her head into the slit lamp machine because he portable one was broken! Needless to say, I don't think I will be going back.

But here is the craziness - he is getting a completely different prescription than my original doc. He is saying that Julia's aphakic eye is only a 14.5, not a 21.5 like originally thought. Because the number is so low, he didn't recommend an IOL at this time (duh). He also said that her non-aphakic eye is farsighted at 4.5. This is the first that I have heard of any correction needed in her good eye. Kind of threw me for a loop. So he is recommending glasses for both eyes, aggressive patching and come back in a month. He thinks the eye turn is worse because she needs correction in her good eye.

So now I am confused and wondering how the two different docs could have such different prescriptions. He said it was okay to do glasses and not contacts - but I thought contacts were the "gold standard" for aphakic kids. Could her prescription be diffferent because her pressure went up to 22? He didn't even say anything about the pressure, but he probably didn't realize that her pressure was a 6 at the last surgery.

So we are seeing our normal PO tomorrow and I am going to fess up and tell him I got a second opinion and see what he thinks of this prescription. I definitely think contacts are going to be the way to go but I am curious to see what he thinks of her "good" eye needing correction.  The bummer is that I just spent almost 300 dollars on a pair of glasses that may now be useless.  I guess I can just have new lenses put in the frames.

Wish us luck tomorrow as we see good ole' Dr. H!

New perspective

I am trying to have a new perspective.  It isn't easy.  I seem to waver like a plastic bag being tossed in the wind.  I go from being positive and encouraged to depressed and anxious - all in a moment.  This eye thing is just stinkin' hard.  It is worrisome, anxiety-provoking and challenging. 

Getting the contact in - I am on a high.  Positive, rearing to go - put on that patch and let's do this.

An hour later...

Contact is gone.  I am dejected.  Feel like a failure.  Can't even do what needs to be done for my daughter.  Horrible feeling.

I am trying to hang onto the positive moments.  Focus on the progress.  I can get the contact in and on relatively smoothly (she cries, but it can be done).  Julia is crawling and pulling to a stand.  She smiles now.

I can crawl!

Look at me stand!

So for now, we are just getting through each day.  The contact she has is a spare from right after surgery and it falls out every couple of hours.  When she is patched, she won't really let me put her down.  She is fussy, clingy and has to be constantly distracted.

It doesn't help that Jed has hit the "terrible twos" and is defiant and jealous of his sister.  Discipline at this age is hard.  As is leaving the house with both of them by myself.  We also found out Julia has chronic fluid on her ears and needs tubes.  Thankfully the ENT is going to coordinate with the opthamologist so that if she needs another surgery this summer, they will just do everything at once.

Because of the challenges of leaving the house with a wild 2 year old and an infant whose contact always falls out, we spend the day on the deck, in the back yard and an occasional trip to a playground.

This is actually the day we lost the last contact.  At the park.

Jed just likes to run...and run...and run.

Next week Julia has an appointment with another pediatric opthamologist for a second opinion.  Not sure if anything different will be suggested, but it will be nice to get another doctor's perspective.  Her eye has also been tearing some, so I am anxious to have her pressure checked.

In the meantime, we are trying to keep our heads up and think positively.  James is a super husband and Dad and constantly reminds me that we are doing everything we can.  He helps balance me out when I am feeling like a failure or feeling scared. 

Perspective is key.  What I look at and what I focus on helps determine the outcome.  I choose to focus on my amazing daughter and see all the things she has accomplished so far. 

Lost...

I am feeling lost.  Afloat.   Adrift.  The highs and lows are taking their toll and I am feeling defeated. 

Yesterday we saw the eye doc and got a new contact.  This custom made piece of silcone was carefully placed into Julia's eye.  The doc said it looked great.  I said it looked great.  Even the fellow working with the doc said it looked great.  This is the 4th try at getting a contact to fit her eye.  Last time the doc ordered a contact that is flatter.  It didn't stay in (in fact, we lost it at church last Sunday.  Imagine me, my mom, and my dad all crawling around on the floor of the sanctuary with flashlights trying to find a contact. Yep - that was us.)  So this time he ordered one that is bigger.  12.5 mm to be exact.  An adult usually wears a contact that is 14 mm.  Julia started at 11.3.  12.5 is usually the size contact an 18 month old would wear and Julia is only 7 months. 

I was on top of the world yesterday.  I was convinced this contact would stay in.  It was SO big and was difficult to get in.  So I reasoned that it would be difficult to fall out.  I was excited to start patching regularly again (even though patch time has been increased by one hour).  It didn't phase me that the doc wants to check her pressures in 2 weeks - I was just so happy to have a contact that would stay in!

So today we patched.  And boy was she crabby!  She is teething and drooling everywhere.  We actually went through two patches because of her drool!

I wanted to enjoy the day so we went to the park.  Julia sat on a blanket in the shade and then I carried her around the playground a bit.  She seemed to enjoy it.

Then we went to McDonald's so Jed could have a happy meal.  It was chaotic, but fun.

Last stop of the day was Costco (Jed needed diapers).  As I am pushing the cart into Costco, I figured I would check her contact.  I swore I checked at the park and it was there.  But when I looked down - it was gone.  I double checked - yep, gone.  And I lost it.  I cried.  I called my mom and sobbed.  People were walking past me by the doors to Costco and looking at the crazy lady losing it on the phone.

I felt like a failure.  Why didn't I check more often?  Why had I been so sure of myself?  I was such an idiot - just assuming this one would stay in. 

And it isn't even the money.  Don't get me wrong, it is nerve wracking to think that at some point insurance will probably not pay for these lost lenses and we will be paying 150 dollars apiece.  But I don't care about the money.  I care about my daughter's vision.  And right now she is not wearing a contact on a regular basis and she is not patching on a regular basis.  Which means her brain is not connecting with her eye on a regular basis.

Adrift...not sure what to do or where to go.  I've thought about a second opinion from another eye doc - but I love our PO.  He is wonderful.  And I don't know that it is him that is the problem.  I know that because of the PHPV, Julia's eye is not shaped normally.

I've thought of glasses - but she won't keep them on and I really don't think she can see out of them.  It is like looking through a little magnifying glass.  And honestly, they really are not best practice for her situation.  We are going to attempt to keep them on her to at least have patch time for the time being.

So I guess we try again.  So another contact has to be ordered, made and shipped.  Which means it is another 10 days or so before we get it.  And hope/pray that it stays in.

Her eye is watering and she is fussy.  I think she is teething, but I worry that it is more than that.  Doc is concerned about the eye watering and wants to check her pressures at her next appointment in 2 weeks.  (For those of you that are not familiar with cataracts - because of the surgery and condition that Julia has she is at high risk for glaucoma.  Checking her eye pressures will tell us if she is developing this as well).  I am thinking if the fussiness and eye watering continues I may call and try to get in earlier just to have peace of mind.

So I am feeling down, low, lost, afraid, nervous and scared.  I am scared.  I am scared for my little girl.  It is hard feeling so helpless.  I wish I had answers and could just fix everything.  I wish I could see the future and see that everything turns out okay.