January 4, 2012

Starting 2012 with fingers { and eyes } crossed...

Three weeks ago I encountered my first heart stopping, breath stealing, sleep depriving Mommy moment. Surely at the end of this you might think Gigi gets her "Drama Queen-ness" from me, but.... it hit me like a ton of bricks and I couldn't breathe.

Wednesday December 14, 2011

I am standing in the kitchen doing God only knows what when an excited Lula jumps up from the living room and races to the kitchen to tell me something.  As she runs wide eyed at me I am completely oblivious to what she is trying to tell me because I am fixated on her cross-eyed stare.

"Lula, don't cross your eyes... Ok. What were you saying?"

She says whatever it was again, we laugh... or not. I don't remember. . . but I do remember not giving the cross-eyed look another thought, at least not for another hour or so. A few other occasions throughout the day I find myself wondering "Did she? Maybe? Just cross her eyes while talking to me?"  But it's subtle and I am not sure if I am really seeing it or if it's just the way she is looking at me. . . or me her. When Hubby gets home from work and I casually mention it to him, he spends a few minutes talking to her about her day and determines that I am seeing things.  She may have intentionally crossed her eyes earlier in the day but now that I am fixating on it I am seeing things. I feel like I might actually agree with him and start to put it out of my mind.

That night at dinner Hubby clears his throat loudly to get my attention and with a puzzled look on his face mouths to me "I just saw it." Now we are both on high alert trying to get her to stare us in the face and see if we can determine for certain that we are both seeing things.  Both of us are now thinking it's not so much that she is going cross-eyed, as 'maybe' it's just her right eye that is going "cross-eyed". . . The rest of the night goes on with both of thinking. . .maybe. . . I might have. . . that could have been. . .I'm not sure...

Thursday December 15, 2011

We wake up, have breakfast, get dressed, drop Gigi at school and all seems fine. Until Lula and I are in the grocery store. For some reason she doesn't argue when I ask her to sit in the shopping cart, not in the basket itself, but up top in the child seat facing me so we can visit while we shop. This never happens. This is when I realize I am not crazy. While we were shopping her right eye, clearly, blatantly wandered to her nose, causing her to look cross-eyed, twice. So, from the parking lot of the grocery store I call her pediatrician, refuse to speak with anyone but her doctor's nurse or to schedule an appointment with anyone other than our pediatrician. . . I make an appointment with him for the very next morning.

For the rest of the day Hubby and I try very hard to convince ourselves that we are just now seeing it because it's all we are thinking about. But....wondering how we could miss something like this, we go back and look through a few months of photos trying to find proof of this wander in any of her photos.... Nothing. We are now sure this is a new issue.

Friday December 16, 2011

In the pediatrician's office I spill my concerns, try to get the point across that this is *new*. . . that I have a family history of similar a eye issue that ultimately lead my family member to a permamant loss of vision in the weak eye. . . All while trying very hard not to be "that mom" . . .but how can I not be.... Something is clearly wrong. My baby with the stunning hazle eyes has something going on with those stunning hazle eyes and this is not one of those "just rub some dirt on it" mommy moments for me.... This is not okay.... this is not okay.... this is... someone needs to fix this... make this better.... tell me that they can waive a magic wand and she's going to be her perfect little self again right now

Thanks to a level headed hubby {because I was clearly taking the 'give me some answers and FIX MY BABY NOW!!' roll} along with a pediatrician that I truly trust my children's life with, my fears were somewhat assuaged and we left his office feeling like this was not permanant, not a vision threatening issue and while we needed to see a pediatric opthamologist we{she}was going to be fine.

Feeling much, but not completely better, I called the Opthamologist as soon as we got home.
January 12th, 2012?!?!
What?!?! 
Could I wait that long?
Should I wait that long??
Hubby wanted to take our Doc up on his offer to "pull some strings" if we could not get an appointment right away, but still trying not to be "that mother" I reminded Hubby {and myself} that the holiday was next week and... well January 12th didn't seem like an unreasonable wait.

Saturday, Sunday and Monday we feel like it was getting worse. Not only was it more obvious but it was happening all the time. This rapid progression was quickly eroding my feeling of "it's going to be okay"

Tuesday December 20, 2011

By Tuesday afternoon I cannot take it anymore.  I am once again at the This is not okay. . . this is not okay. . . this is. . . Someone fix my baby now!!!! stage. Convinced that if I share this progression with our pediatrician and he once again assures me that all is okay and waiting until January 12th is not going to be a problem, then I will be able to get through the holidays without having a complete nervous breakdown.  The next thing I know I am getting a call back from the doctor stating that the Opthamologist he initially referred us to - the one that everyone I know that has any experience with her, including medical professionals rave about her - is on vacation and that is why she is not available until January 12th, but we have an appointment with another Pediatric Opthamologist at 8am the next morning.

Wednesday December 21, 2012

We spend well over an hour with this Opthamologist's P.A. and then the doctor himself. They run a number of tests and assure hubby and me that we are not crazy, nor are we over reacting that Lula in fact has something going on that is causing her eye to wander. She has been straining to focus both eyes for a period of time and over time one of the muscles in her right eye has weakened and is what is causing her cross eyed look. We are given all the information about her apparently common condition and told this issue can be corrected and there are a few different things that can be done with a final, last ditch effort being surgery.

Now I am asking myself; What is the appropriate reaction here? Relief? Fear? What? I am thrilled that I am not crazy. I appreciated hearing that we did the right thing in reacting to this with a sense of urgency -That action does need to be taken before permamant damage is done. That I am not "that mother". That some parents 'wait and see' or only seem to notice the eye wander in photographs and because of that they do nothing, or at least not right away; But the earlier it's caught and the sooner it's treated the more likely it is to not only be corrected but the less likely it is that the brain will decide that the eye is a problem and stop using it, causing permanant vision damage. Okay. . . so 'relieved' to hear that we've done right. "Yay!" - 'Relieved' to hear there is a plan of action and there is likely going to be a "fix". But surgery? Yes. . . that is a last ditch effort plan, but.... That's my baby. Those are her eyes.... Pushing that to the back burner where is belongs and crossing my fingers.

So... Glasses.

Wait, what?

This is the child that I cannot get her to keep barrettes in her hair for more than 5 minutes! This is the child that would rather push and blow and hold her hair out of her face with her hand than use a small clip to keep her face hair free. If she needs to wear glasses to relax her eyes, to stop the crossing, to strengthen the weakend eye, to fix the problem.... HOW am I going to do that?  Super-glue them to her face???

We made it through the holidays. Her eye got a little worse. Lula started to make little adjustments to make it better. She would wink, and squint and cover her right eye and tilt her head to see. All of this breaking my heart. She was already figuring out how to get along without using her right eye. Hurry glasses, hurry!!

Wednesday January 4, 2012

We picked up Lu's glasses this morning. They are... well they're not good, BUT. . . she is so darn cute that I think she could pull just about anything off and make it work!  I am feeling pretty good about them so far, She has not offered up much resistence to wearing them. She has asked a few times to have them adjusted but other than that she's kept them on. As far as I can tell they seem to be making it a little better, but then again I could just be telling myself that.... Time will tell.

I've kept our January 12th appointment with the Pediatric Opthamologist that everyone raves about. It's not that I am hoping for a different diagnosis or treatment plan, in fact I think I am, deep down hoping that she says the exact same thing; It's just that if I have to see a Pediatric Opthamologist as often as it seems Lula will need to for the next 10+ years.... I would like it to be someone that we are really comfortable with. Can't hurt to get a second opinion and meet another doctor. Right?

I feel better than I did three weeks ago. I can breathe again, but my heart still aches for my poor baby. I don't want her to have to do any of this. I don't want her to "have to" wear her glasses, or possibly wear a patch, or maybe even go through surgery and I certainly do not want her to have a weak eye.. She's my baby....I know she's going to be fine no matter what. She's tough....But I am certain that she and I would both prefer to be on the other side of this sooner rather than later.



Like I said... they're not good... But she is so damn cute I am positive she could make a burlap sack adorable!


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2 comments:

Levans5 said...

I was reading your blog--- I was right there with you on the fix this now... something not right. I am still tearful. I wear glasses and I still have straining eye issues that seem every year to just get worse but it's not like your sweet little girls eye problems. I am so glad that you were persistant and didn't wait. I try so hard not to be that mom either but that is our babies and we only want them to be okay at all times. :) It's natural.
She looks really cute in them. And the fact that she's keeping them on for the most part is awesome. She feels better with them on. YAY! I know when I got my glasses fixed and put them on it does wonders for my eye strain and I can actually feel a difference. So bravo! I know it's hard to get them to keep their hair out their face too. I have a 2 yr old w/same issue... LOL

Glad you got some answers and can breathe a less stress breath! Love the blog. I enjoy reading about other peoples experiences because they help me with mine.
Thanks! And sadly yes the disclaimer part is sad to have to write it... but doesn't make you shallow or self absorbed.. it just makes them that way STILL. :)

Wendy Rose said...

Well....that was a whirlwind!!!! I think it's SO AWESOME that they got you in to see someone ASAP when things started getting worse.

If I've learned anything in the past (almost) 7 years of raising a child who has a little something "not quite right", it's to ALWAYS -- A L W A Y S -- follow your gut.

You did good, Mama.

And she's so stinkin' cute in those things I could just squeeze her!!!!!!

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