September 23, 2010

One more thing to do each day

Last month, before the latest shunt revision we took Annabelle to the eye doctor to discuss some concerns. We had been noticing that her left eye was turning in a bit and after bringing it up to the pediatrician she agreed it should be checked out. We met with Dr. Clark, a highly recommended Ophthalmologist and he confirmed that the eye was indeed turning in. Having him confirm this was disappointing, but not the worst thing in the world. However, I have to admit though, I was sad that there was yet one more thing "wrong". One more diagnosis to add to the list. It's called Strabismus and it actually quite common - click here if you are interested in learning more than anyone should ever need to know about it.

I'm going to be super honest here - it's my blog so I can do that, right? Annabelle had just gotten fitted for her AFO's a few days before this appointment so the thought of her having leg braces AND glasses just did not sit well with me. I know it sounds superficial and anyone that knows me, knows that I am not that way at all. But it did make me sad for her. Our daughter is beautiful inside and out, but we live in a world where people are very focused on the outer appearance. Annabelle will have leg braces and maybe more "equipment" throughout her life so honestly I didn't want her to have one more thing to get in the way of her connecting with others. As you can see from her pictures she is so expressive and has an amazing smile I didn't want that covered up.

After all the testing and three rounds of eye drops the Dr. gave the good news and bad/good news (confused?). Well, he determined that her eye was healthy, no redness or swelling and had good focus - this is good news. The bad/good news is that glasses will not correct her condition. This is bad news because if it gets worse then surgery will be necessary but it was also good news because as I mentioned before I didn't want her to have to wear glasses :-o

So we left with instructions to patch her right eye (the stronger one) for 1 hour each day and return back in one month for a reevaluation. We have been doing it almost every day with the exception of the days leading up to and after her latest revision surgery. She does not like it but in typical Annabelle fashion she rises to the occasion. She kind of yells at us in a crazy voice telling us that she is very unhappy and doesn't like it but then moves forward. She's visibly happy when we take it off and sometimes tells us in a similar voice how she felt about it but then once again moves on.

She is once again inspiring me to not complain as much and to try and roll with the punches as best as I can. She is such a trooper!

I have to admit that I don't think there has been any improvement yet, but considering she had surgery in the middle of the month I think he will have us continue this routine for a while and will monitor her progress for a few months. I will update again after her follow up appointment on October 5th.

11 comments:

  1. Caleb has the same thing and we have been patching for some time now. It helped him a little but he did eventually need glasses. I hated getting him glasses!! But now, I love those glasses and he looks strange to me when he doesn't have them on. You can buy really cute patches at http://www.ortopadusa.com/. Our kiddos just come with more "accessories" :)

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  2. Oh Miss Belle you would look beautifully sophisticated in glasses. :) But I hope the pirate patch works and you don't have to have surgery. We love you and are thinking of you down here in Ga! Jet says you are one tough little girl - he likes that about you. :)

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  3. I hear eye patches are all the rage! And they'd probably make for a great game of peek-a-boo (in our house, Emily always covers up only one eye when she plays and stares right at you with the other).

    Thank goodness our kiddos are so resilient...

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  4. Hugs. I know its sooo hard to deal with one more thing. I'm right there with you. We've been patching Alex for several months now and the doctor does think its making a difference, we go back in a few weeks and hope it will be the end of that. I hope the patching does the trick and that she will only need it for a short time. One tip from us, the patches we found in the drugstore were very harsh on Alex's skin, on someone else's recommendation, we found another type of patch that we ordered on line that is much gentler for him (and super cute). Let me know if you want/need the info and I'll send it to you. All the best!!!

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  5. I know exactly how you feel! Nickolas' eyes have been worrying me for a while. The thought of glasses on top of everything else made me so sad! The thought of one more thing on top of everything else...
    But she's taking this opputunity to teach you about adjusting to what life throws at you. Who knew such a little cutie could be such a good teacher!
    The idea of cute patches sounds interesting

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  6. Yes she is a trooper & with that adorable smile, she will have the world eating out of her hand! Glasses or not.

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  7. I agree with Grammy. I don't want to take anything away from your feelings Nic, so I hope I don't by saying this - but that little girl of yours has a glow about her that is so strong, she will actually manage to make the other kids envious that she has cool "stuff" and is strong and happy. She was meant for bigger things in life. Even though you aren't getting them now, on a side note... glasses are seemingly quite cool these days.

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  8. Hi and hugs to you all! Boy, are we the ones to talk to about patching :) We have been patching for over 2 years on Michael (varying amounts of time), he had amblyopia and strabismus. Kids bodies are so resilient and we've had a great Dr. to get Michael's eyes to where they are now. Call me if you want more details. We consider this such a minor thing now although at first it was frustrating for a long time. I can't wait for him to be patch free someday! He is down to 3 hours a day now. We hope Annabelle's patching works well and let us know if you do end up doing surgery. We did have the surgery for Michael's strabismus and it worked great. We can't recommend Dr. Borchert at the Vision Center at CHLA enough. He really is the best out there. I will try to call this weekend. We send all our love and prayers. Love you! -Colleen and family

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  9. We've been down this road, and I remember thinking the exact same thing when the dr told us to start patching, "great, just another thing to remember to do everyday". I am a glasses wearer myself and didn't want Nate to have to go through what I do (on top of everything else he has going on). Nate wasn't a fan of patching, either. And to be honest, I wasn't so good at remembering to do it every day. Or every other day. Or every 4th day. But we forged ahead with glasses (so cute though, and may I recommend getting a real pair if you must? Much better than rubber ones and I found Nate's at Walmart!) and finally on to eye surgery. Bottom line is I know you are an awesome momma who will do anything and everything you need to for your little girl. Annabelle is amazing and she will shine regardless!

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  10. Oh, mama! One more thing, indeed. The double 'blow' of AFO's and the patch must've been hard. But I agree with everyone else - your little lady is pretty darn cute no matter what you put on her. Hugs!

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  11. Annabelle is absolutely adorable. I believe she would be beautiful even if she did wear glasses. I believe Ireland has the same design on her afos as Annabelle.

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