August 23, 2012

Intermittent Exotropia… (wish I had control over my baby’s eyes)

I think I last left off telling you about how well Alivia was tolerating the eye patch.  Feel free to catch up on previous posts regarding Alivia’s Intermittent Exotropia HERE.  Since, and unfortunately, I’ve been seeing her strong eye now deviate outwards.  After a phone discussion with her Ophthalmologist, it was recommended that I stop the patch for at least a week or two to see how her eyes are doing.  If I’m not seeing her strong eye deviate, I can resume patching.  The goal, according to her doctor, is to keep the vision in both eyes as equal as we can.  As a reminder, the patching was not to treat the eye from deviating but to assist her in using the eye muscle in her weaker eye thus preventing vision deterioration/loss.

The hubby and I are, to say the least, a bit sad and disappointed.  We hate to think that treatment actually caused the same condition to present itself in her healthy eye.  Of course, we were well aware of the risk we were taking when we decided to treat her with the patch.  I will not say that we made the wrong decision.  In fact, it seemed like a no brainer at the time especially considering the alternative which was to do nothing.  

I’ve never posted any pictures of Alivia’s eye actually deviating and as I sit here typing this, I’m still trying to figure out why.  I know I still feel hesitant but I can’t figure out the reasoning behind this emotion.  In away, I feel bad just looking at pictures of her when her eye is not working properly.  It makes me sad.  Am I afraid others will be sad for her too?  Maybe a little.  I guess I don’t want people to feel bad for her.  I am VERY protective.  Mostly, though, I wish I could control those beautiful eyes of hers myself.  I would rip out my own and give them to her if I could. 

Again, and I always feel the need to reiterate this but, I know this is not the worst thing that she could have.  I realize there is so much worse out there, but it still doesn’t mean that I can’t or shouldn’t feel the things I’m feeling.  We all want our children to be medically perfect from the top of their head right down to their adorable little piggy toe right? 

The only reason I decided to post this picture is to help someone who may be wondering if their little one has the same thing.  I know that just reading about it isn’t enough and that a picture, well, speaks a thousand words.  Looking at the picture you can see the left eye (her right) is deviating outwards.  This used to be her healthy eye.  The right eye (her left) is focusing on whatever it is she is looking at which is actually the one diagnosed with the deviation.   In this picture, it is working properly. 

199 IE RSWM
Anyhow, for those out there that want to talk or have any questions, please feel free to contact me via my email me button in my sidebar to the right.  I can’t always respond to comments because some of you are marked as noreply-comment@blogger which doesn’t allow me to see your email address.  In case you missed it, you can find a previous post I published on how to change your Blogger settings so that your email can be viewed when leaving comments HERE.

9 comments :

  1. Man, I know this can't be easy. Of course you feel bad for her. It makes me sad for you guys because I know how it feels to worry for your child and you want the best for her. Even if it isn't something more serious, you still want her to be completely healthy I understand that. I think any decent person would understand. She's still gorgeous and happy though and you guys are just doing what any parent would, weigh your options and do everything you can to help. Are you going to continue patching if the strong eye stops deviating? I'm praying for her sweet beautiful eyes. I know you guys must be frustrated with the situation.

    ReplyDelete
  2. Oh I am sad for your little beauty. Somehow I missed all this about her when you posted! It sounds like you made the right decisions as parents at the time and did what you thought was best. Don't beat yourself up - but I do get how you are sad. I am too. :(
    We all of course want our kiddos to be perfect and it is a harsh reality when we realize there is something wrong. I just realized/found out that J has a major pronate in her one foot. I can't believe it took me this long to figure it out - and I guess later in life it can lead to knee injuries, foot injuries, and shin splints, and other things depending on how athletic she is. Poor kid. I need to ask the doctor what to do or if there is anything we can do. So even though this is not nearly what you are experiencing - I get it completely.
    Keep us updated on the progress with Alivia - I have heard many times this type of thing does end up correcting itself... but what do i know. :(

    ReplyDelete
  3. I know it would be hard to watch your little girl struggle. We all want our children to be perfect in every way (because to us there are!)...and when something is out of our control it is just so hard. When Eli was younger he had a cough..that last almost a year. It would come and go, get worse and better...and they told me he was allergic to air...I always worried that parents would think my child was sick or not want to be around him with this cough. It was hard, but over time he lost it and we still are not sure why he ever had it. But the feeling I had was hopelessness...or helplessness. I will pray that the treatment you are trying for her works and that over time she just grows out of it. She really does have the prettiest eyes!

    ReplyDelete
  4. well, she has beautiful eyes, that's for sure! I'm really hoping that this is an easy problem to fix..I remember a number of kids having eye patches when I was young and that is was resolved after some 'training'. Hope it's the same for you all!

    ReplyDelete
  5. Any time we think the world may view our kids as less than perfect, I think our defenses naturally go up. Your sweet girl is so beautiful and you are doing all you can to help her strengthen her eyes so she'll have less trouble down the road. I'm sorry you're hitting some bumps on the way, but thank goodness her condition doesn't cause her any physical pain. As a mom I know how difficult is can be to watch our kids struggle. Hang in there. You are doing a great job :)

    ReplyDelete
  6. HUGE HUGS!!

    Your post hit home. While my daughter doesn't have the same issue, my daughter has a birth mark on her face and it took me forever to actually write a blog post about it. Not sure why it took me so long either. I am glad I finally did. I felt better.

    Hang in there! She is such a cutie!! :D

    ReplyDelete
  7. It's so hard to see our kids struggle. I hope you can find the answers you're looking for. She is a beautiful girl no matter what!

    ReplyDelete
  8. Ok, I'm going to have to go back and read that old post. I feel your pain mama. Last week we brought Xander to his first eye appointment. There is a strong family history on my husbands eye of ambilobia (lazy eye). My husband had to do the eye patching but they caught his way too late and this day only has peripheral vision in his left eye. Anyway, Xander has the same vision as dad and essentially his left eye isn't processing anything at this point. It made me so sad to hear that my baby has only been using his right eye. We will be getting him glasses this weekend which he will wear for 3 months. Then we will start the patching process to hopefully get his left eye to start functioning. I practically wanted to cry when the eye doctor told his this. It just hurts to see your child struggle.

    ReplyDelete
  9. Honey...I can't even imagine how you must feel? We all want everything to be perfect for our children...fyi...the mother bear still comes out to protect even when they are adults♥ UGH...it NEVER stops. We are all humans and there is know way we can have 20/20 vision on every decision. I just heard a quote today...Feed your faith and your fears will starve to death! You are brave and she will be just like you☺
    Laurie @ Pride in Photos

    ReplyDelete

Related Posts Plugin for WordPress, Blogger...