Thursday, July 03, 2008

A Motley Crew


Holland had an eye doctor appointment last week. Good news is that her vision has not gotten any worse. Bad news is that there hasn't been any improvement in her left eye over the past couple of months. She is basically not using that eye to see when she does not have her patch on. Soooo. We are now patching 6 hours a day (up from 2, then 3-4), which is why you see her wearing the patch in so many of the recent pictures. 6 hours a day is the maximum amount that you can patch and continue to see benefits. We're going to see how it goes for another 2 months, then see the doctor again.

The even worse news is that we are very likely looking at another surgery. Not only is her left eye continuing to turn in, her eyes also roll too far to the sides and up and down when she is moving them. This is apparently a common problem that goes along with strabismus, and also has to do with the eye muscles. If and when she has the surgery, we would hopefully try to correct muscle balance issues in both eyes.

The trick is to try to improve the vision in her left eye as much as possible before doing the surgery. If the vision in that eye continues to be poor, there is a risk that even with surgery to realign the eyes, she will continue to neglect using it and we won't have as good of an outcome from the surgery.

We are very lucky that little Holland is a pretty rules-oriented person. The rule is that we put her patch on before breakfast, and she has to keep it on until one of us tells her it is okay to take it off. Rarely, she will ask to take it off early, but most of the time it doesn't seem to bother her at all and she forgets about it until we tell her she can take it off.

Boy, 6 hours is a long time though. We used to be able to take it off before we went out. Now she has to wear it, and it just adds to our motley crew image. Holland with her eye patch, glasses, orthotics, scabby knees, and crazy unbalanced gait, and Eden with her pony walker or wheelchair, cochlear implant, and orthotics. You should see some of the looks we get... Of course, any seasoned micropreemie parent could spot us a mile away! We don't care though. We smile and sing and chat as we continue on our merry way.

That's just how we roll.

15 comments:

Kellars Mommy said...

Love the that's just how we roll comment!! I guess I should have come here and read before I posted my eye rolling question, now I am wondering if it may have something to do w/his strabismus surgery. Is there a big difference in Hollands vision in each eye? Yay for Eden getting her new wheels!!!!

Billie said...

Chrystal,
Holland's right eye is a -4, and her left is a -7.
Billie

Anonymous said...

Love it! I love this post! Yey for you and your super-cool posse!

Amy

Sammie said...

We were up to 6 hours a day at one point too.. the adhesive started aggravating Nate's skin around his eye. Nathan has a big difference in his eyes.. he is far sighted in his right eye but sees 20/30 out of it.. and he is near sighted in his left eye and sees 20/60.. BUT before he started patching he was only seeing 20/120 so it has improved! We've been patching 2 years now...
Go to Patchpals.com for the non adhesive patches that fit over the glasses if it starts bothering her.

Good luck!

Sarah said...

You guys roll on our way and we'll all go out on the town together, crazy technology and all! :^D

Mamá Terapeuta said...

BEAUTYFUL PICTURES!!! They are SO cute! We changed from 2 to 6 hours like a year ago and it made a huge difference. Her amblyopia was over 2 months later. And since then, we still do 6 hours but different eyes each day, to no let her 'dominant eye' take over again.

I agree, 6 hours is too much!! I do 3 and 3, because I dont like taking her to preschool with her eye patched and she still naps. Our ofthalmologist has never been able to tell me if this is wrong, he says there are no studies about this. But I think it works just fine.

Keep on rolling :)

MeghatronsMom said...

Fo-shizzle on how your roll! I too often wonder what people think when they see the braces, glasses, patch, etc. and you get double the looks I am sure! They just don't know what they are missing is why they stare!

Your mom is a great seamstress & can make those patches that go over the glasses. My mom made MM cause one day of patching tore up her skin, even with placing milk of mag around her eye as a protective barrier first. She then made several patches for outfits, holidays, etc. They were really quick & easy for her to make with as much as they charge for those things. She made them from felt which is like $0.25 a square @ walmart.

LOVE the first pic of the girls! It is just so sweet!

Jennifer said...

Hello, I am a 30 year old 28weeker.I was at the time considered at "very small" preemie. I was 3pounds at birth.I also have strabrisims and had my first eye surgery at 18 months.It was a long process involving 10 surgeries(5 on each eye) but I no longer need glasses but do favor my right eye to see out of. I just thought I would share my story with you.I love all of your post about your sweet girls.my cousin has micro twins(25week6days) and you give my family a lot of hope!

Just Me said...

I'm not a preemie, but I have strabismus that was not identified until I was an adult. I don't know why because I had eye exams, in-school screening annually, and got glasses as a teenager, but it just somehow was missed. Obviously it's not severe, but it is very clearly present and it affects my ability to do paperwork easily.

Because I missed the treatment window it has been treated by using prisms to divert most images so my good eye processes them correctly.

However, I wish that someone had known to treat it when I was little because the issues with paperwork can be pretty frustrating and have caused me to get in trouble at work before.

It's also something you feel aware of. I'm waiting for new glasses that were ordered a couple weeks ago; I had had enough change in the bad eye that the first time it had to see something alone I commented on it's change. Now that I have definite proof that I wasn't being crazy feeling I couldn't see well I just want the new glasses so badly.

I know patching and surgeries are hard, but I'm fairly certain it's worth it to avoid the "you need to take more time and check your work because you make _______ mistakes" in adulthood.

Anonymous said...

If that's how the Holland/Eden crew rolls, then you can roll by my 'hood anytime because they are the sweetest, most loving children I have ever e-met!

Kudos to you and John for not shying from the public and showing us how to face difficulties with courage and grace.

Anonymous said...

I can commiserate with Holland! I did both the eye patch and the surgery thing when I was very little and still have eyes that don't track exactly perfectly together. (Surgery has come a long way since the 60's!) Don't worry if her vision is never 100% corrected. While it's nice to have both eyes pointing in the same direction, it's actually not such biggie having your brain basically ignore input from one eye. She'll take a little more time and effort learning to drive, and she might be a bit of a failure at frisbee, but other than that... It will help later on, though, to really know if her dominant eye is the same as her dominant hand. Ending up mixed, like me, means learning to do some things with the off hand for better results. Big hugs to you and the girls.

Monique in TX

CG said...

I love that is how we roll. I might have to use that sometime when we are out if someone says something.
By the way, I have a lazy eye or stab...My parents should have patched but didn't, well tried and I didn't so they didn't push it.
My eye may not be as bad as Holland's, but I do need a drs note when getting my DL renwed because I don't see out of the one eye well at all. It really doesn't turn out or in or get out of balance unless I am really tired. Then it can do all sorts of strange things.
My cousin heath was a IUGR baby at 33 weeks 26 years ago and he had the oxygen burnt eyes and his vision is crap. His eyes used to really cross badly. Both. When he was about 13 they ditched the glasses and went to contacts. Now you can't even tell it. Oh and he was a scrawny thing for 33 weeks. a little over 3lbs. I know it isn't the same as Holland's but it gives you a bird's eye view of adult life with it, I hope!! Either way, the girls are so pretty no one is ever going to notice.

kbreints said...

You truly are a great family. I love to watch your prgression. Love concurs all and those girls are LOVED.

Anonymous said...

Holland and Eden are getting soooo big.. I haven't been to your page in while, but think about the girls often..We are loving every minute with Braelyn..Your girls are soo spirited and the pictures you take are absolutely beautiful!! Your such a wonderful mom..it's no wonder your girls are so happy!! I too love the "That's how we roll" comment..Pulse ox, tanks and tubes are our thing!! Take Care...Lorrie, Braelyn's Granny

The Hanna Family said...

You are such an amazing family. I hope we can be as positive as you when our twin boys are older.

Michelle Hanna, mom to Noah and Jonah (23.6 weekers)

Blog: www.shaneandmichellehanna.blogspot.com