Your stories – Introducing Ellie

Corrie, a regular commenter, sent in her daughter Ellie’s story. (Interestingly, both Amomofelly’s daughter and Corrie’s daughter are named Elliana). If you’d like to share your child’s story, please email me ann @ shinypebble . com -Ann Z

Ellie's eye turn before her surgery

Ellie's eye turn before her surgery

So, I have been writing some comments here, now it’s time that I introduce our Elliana to you.  Ellie was born with infantile estropia (inward turning of the eyes).  At her two month check-up, the pediatrician thought that it would be a good idea to see a PO to have her evaluated.  I was a little skeptical as all babies are born crosseyed, and Ellie was still so little, but I didn’t want to miss anything (we had just discovered that I had missed a hearing loss on our two-year-old), so I decided to make an appointment.  The eye doctor checked her out and told us to come back in two months.

first eye patch at 4 months

first eye patch at 4 months

The next time we came back, the PO told us to start patching alternate eyes two hours a day and be back in two months.  We did that, and then she started talking surgery. I was completely overwhelmed because we were going through some serious testing with her older sister for an undetected hearing loss and subsequent speech delay, so I didn’t even know where to start researching about what to do with Ellie.  I decided to get a second opinion, and made an appointment at a PO at Emory Hospital (a big university hospital).  After they had us wait for a very long time, they dialated her eyes and made us wait with the eyes dilated in a room with very bright light.  I was not very impressed, to say the least, but I came here for a second opinion, so I was going to get it.  When we were finally seen again, they told us that yes, Ellie needed surgery.  So, we scheduled surgery with our other PO.

Ellie was 9 months when they did the surgery.  I agree with all of you that have gone through it that the getting out of anesthesia part was the worst thing about it.  I was not allowed to go into the room where they put her to sleep because I was 6 months pregnant with our third daughter, but thankfully a friend was able to take her in there, and she did really well.  The PO operated for 1.5 hours on both eyes.  She came out of the anesthesia just beside herself.  Thankfully, I was still nursing her, so she was able to nurse right away and she quieted down right away and kept nursing while they took the IV out of her foot.  She screamed the entire way from the hospital to our friend’s house where I picked up her sister, to our home in rush hour traffic in Atlanta (yikes!!).  It was heartwrenching, but I had to get through it and get them home.  She pretty much needed to be held the rest of the day, but the next day she was back to her happy self… actually I think she was happier.  She could finally see things that she had never seen before.  It was AMAZING!  Up until this point, both of her eyes always pointed to her nose.  I don’t think that she ever saw anything beyond that.  She always studied her fingers.  We always teased that she was born with a diamond ring on her finger as that was all she ever looked at.   Her eyes were perfectly straight right after surgery.  The inside of her eye was red, and we had to put in eyedrops for a while, but we had no complications.

Ellie's first glasses at 9 months

Ellie's first glasses at 9 months

When we went in for her two week checkup, the doctor was very pleased and told us to come back in a month.  Before we even went back, I noticed the left eye drifting in to her nose again.  At our next checkup, the PO noticed it too, and told us that we needed to get glasses.  So, we got glasses.  The next time we went back, we had to start patching again, 6 hours a day.  Ugh… I was frustrated.  We followed the orders until the summer came right before Ellie turned two, and because our Ellie sweats so easily and the patches wouldn’t stay on, I decided to give her a break from patching.  We got a new prescription for her lenses after the summer and started the patching again. We have been at the PO every two months for over two years now, but have not been able to improve vision in her left eye that’s still turning in.  She can actually make that left eye almost completely disappear.  It’s scary!   Finally, our PO wanted us to see the doctor that is the head doctor over the group that she is a part of for a second opinion because a second surgery is not recommended unless the weaker eye improves to at least the same level as the better eye.  So, we had a second opinion from him, which didn’t give much hope either, we only changed the prescription in her left eye slightly.  I am still waiting on the new glasses to come in.  In the meantime, I have started vision therapy with her.  Our PO didn’t think that vision therapy would help her, but in my opinion it also does not hurt her, so if what we are doing isn’t working, I might as well give it a try.  I don’t know officially that there has been improvement as we are not scheduled to go back until May (since our youngest daughter needed a follow-up appointment then), but judging from her performance as we do these “exercises” every day for two hours, I think she can see a lot better than she used to. That’s the story of our Ellie.

img_3030

Ellie today in her patch and glasses

Patch tree

I made her a tree poster, with lots of empty branches. Every day when she takes a patch off, she attaches it to a branch: after all a tree cannot be naked. Every time she fills up a branch, she gets a special treat.

Advertisements

9 responses to “Your stories – Introducing Ellie

  1. Oh ellie is so beautiful! I just showed the picture of her patching to my daughter and she asked me who the pretty little girl was!! Look, she’s wearing a patch like me!
    I love the patch tree idea!! Awesome.

    Like

  2. Thank you for sharing. I love your comments on what you have been doing in your therapy. They are very age appropriate and things that kids would be, or should be doing in a pre-school curiculum. Our kids need to be learning and strenghtning our eyes at the same time. Elly’s new favorite snack is craisins with toothpicks. I sure hope your Elly shows improvment in her vision. Ours is very slowly making gains and we’re working hard too.

    Like

  3. Some very useful advise,thank you! I have a 2 year old that I just started to patch,it is very hard to get him to keep it on…the tree n treats is GREAT….thanks again

    Like

    • All the best to you, Melissa in your patching adventure! It is most hard in the beginning, but if you can persevere through the first struggles, it does get easier as his eyes improve! I am glad you like the tree poster. We have filled it all up with hundreds of patches, but we moved onto patches that attach to her glasses since then since these patches will not stay on her in the summer. We LOVE the framehuggers patches! If your son also wears glasses, you should definitely give these a try as they are very comfortable and soft and they will obscure the vision in that eye completely just like the sticky patch would! Amomofelly reviewed this patch here: https://littlefoureyes.com/2009/07/07/week-6-%e2%80%93-framehuggers/
      Take care!

      Like

  4. I find this encouraging. I have an 11 month old who had surgery due to congenital esotropia 2 weeks ago. The first week post-surgery they were straight…now I can see the weaker eye turning in again and it’s breaking my heart. Your daughter is SO beautiful. Thanks for sharing. I’m looking for reasons to be optimistic about my little Rylie-bugs condition.

    Like

  5. I am upset to find out my daughter (7 years old) has severe lazy eye, her left eye almost blind. She refused to put on patches. I showed her this few photos, to ensure that she’s not alone and despite putting on patches can still look cool and pretty, her reaction was “it’s ugly!” She is moody, she said she can still see with her single eye. Feel helpless. Can anyone share how to tackle her emotional needs? Thank you!

    Like

    • Oh goodness, that breaks my heart! I think that http://amblyopiakids.comis a great site that talks a lot about the emotional side of patching. Would she be open to decorating her own patch? I think it’s really hard at her age because those patches are very visible and people will comment on them. Is she open to bribing at all? Or maybe having friends that will wear a patch with her for a while?

      Like

  6. So glad you are doing so much to help your daughter. I had an eye that turned in since birth and it was left till grade one and was deslt with because I cimplained I was being picked on at school. I was given glasses which I rarely wore. In grade five I started doing eye exercises secretly. I covered my good eye with my hand and concentrated to get my right eye to look outwards. I did this for five minutes a day for a couple of months. My eye stopped turning in after that. I would have loved my parents to try surgery as school was hell when you had such an obvious problem. Good on you for doing the hard yards to try and correct her eyes, I promise when shes older she will appreciate it.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s