Lauren's Post Op Visit - Need Opinions

[laurensmom]

Okay,

We had her post op appointment yesterday as well as her eye doctor appt. I guess I expected so much more and I'm just really, I don't know. Let me get your thoughts on this if you guys would.

First of all the eye doctor, it turns out that in the months we were waiting for her surgery (May to now) her right eye shut down. She's decided not to use it and now it's not only gone lazy it's lost vision. So now we cant get the surgery we have to patch it 3 hours a day and she will be wearing glasses. They said this may correct it all together or just strengthen it enough for her to have the surgery. Anyone here have anything like this or know of anyone that this has worked for? I'm just at my wits end. I was at the Chineese place and Lauren was with me. There was this table of 10 or so people and Lauren was just being cute and smiling at them and then I can overhear them talking about people they know with "Crazy Eyes" and I just wanted to Yell at them that it's so impolite and RUDE to talk about people like that. Of course Lauren didn't have a clue but I went home and cried because I know this is what she has in store for her and I just want to take it all away.

Second of all, the surgeont said that she looks really good but it's going to take a full year for him to be able to determine how well it went or if she'll need more. Her eyelids are still uneven and he said that it could grow into being straight or he may have to do a second surgery but he wont do that until she's 7 because that's when the head stops growing. Now for the back of her head which is mishaped he said that there was nothing he could do besides having her get a major surgery in the back like she did on the front. He doesn't recommend this and that we missed the boat on having her wear a helmet. So now my poor baby we'll have a mishapen head on top of everything else.

Okay I know I should be thankful she's healthy and alive and doing wonderfully developmentally. But for all you girls out there that went to the same type of schools I did you know what I'm talking about.

Well I just needed to vent and get some opinions. Sorry I went on and on. I just haven't been able to sleep. It was such a long day. We left our house at 7 am and didnt walk in the door till 8:20 pm. Oh and any suggestions on keeping her eye patch on will be VERY welcome and GREATLY appreciated!!

Thanks guys!!

[frankiesmom]

Hi Denise,
I'm still just beginning this journey so I have no insight to offer. You just have to stay strong and do what you think is best. You do have a beautiful little girls and in time her eyes will be corrected. As far as the mis shape in the back of her heard, she is a girl and I would just keep her hair at least shoulder length when she gets older, women have many ways to cover their flaws, check out all of hollywood!!
I would love to hear all updates about her eye, as I am concern about my son too. He got a good report from the opthamologist last month but since then under his eye seems red alot with almost some pimples- he has a stork bite on his upper lid, so when he is really tired now he looks like he has a black eye or swollen.....i think its because he keeps rubbing it... I go to the cs and ns next week, hopefully, they will tell me if its nothing...

Hang in there denise and take care of your little beauty!

[Jennifer]

Denise~
I'm sorry that everything wasn't postive at your appointments!
I can't help with the eye patching...we were given some 'just to see' if it was a visual issue even though they 'didn't think so'....I couldn't get myself to put them on her if they really weren't sure they were needed- we lucked out and they weren't. There are a few who have done them though...hopefully they see this and can help!

The back of the head issue....Emily also has a 'misshapen' head in the back. She has so much hair, I don't notice it except when it's wet or sometimes trying to put in pony tails evenly (it's easier on an even head :giggle). I asked our NS about it...She is an extreme profectionist and I was sure she must not have known about it otherwise she would have fixed it....nope, she knew about it. She explained that she didn't believe that the dangers of surgery was worth it and that over time, it would round out some as her head shifts with brain growth and what not.......
Your NS's comment on waiting a year and not doing surgery til she's 7....I agree with the waiting a year to see how things shift...now that the suture is released, things will naturally shift on their own also.....the head you see today, is not the head you'll see next year.....It's hard, but I would be concerned if a doctor would jump into surgery right now w/o giving it at least a year. Our NS did tell us in the very beginning though that coronal is one of the hardest to correct due to the assemtry in the face and 'natural' growth is something that can't be predicted....the 7 year part....I've heard some NS's say they wait until the kid is 7. Mine on the other hand, said that by 2- the facial features are shaped how they are going to be shaped, so there is no benefit to waiting until 5 or 7....Who's right? I don't know. I've heard 2 and I've heard 7. I had to make the choice to trust what my NS said as she's never 'failed' me before. Could she be wrong- definantly. I sure hope not though!

Hang in there! She will continue to amaze you with all the she does.

:hugg :hugg :hugg

[Matthews Mommy]

I do not have any advice on the eye situation but what I can offer you first :hugg . As far as the head Matthew has Assymetry throughout the body his face even his internal organs, he gets ear infections quite often because of this and has normal things like a virus can be real extreme to him. What happened with him is he still has an open space and bony defect throughout the skull they were going to do the surgery this September but I did do research and found it was better to wait till the bone was more mature, usually 7 or 8 years because the bone is easier to chip when it's hard. I used my own instinct and decided to wait.
So we all make the best decision we want for our children, and I will pray for Lauren and your family.

[Melissa]

For several years, Bryson had one eye that looked off in a different direction. His brain basically stopped using it - officially, he COULD see through that eye, but he just didn't, most of the time. It led to him walking into things that were in his blind spot a lot of times. Our eye doctor said that there were a couple of possibilities - kids with craniofacial anomalies are sometimes missing the eye muscles (or have them get damaged at some point) that control the equal alignment of the eyes. Sometimes they have weak eye muscles. We could go through a surgery to correct it, or could try exercises to see if that would help. I talked to some friends who's children have gone through the same - they said that the surgery is really simple and almost painless. We still decided to try the exercises first, since Bryson had had already had so many operations. Anyway, he did eye exercises every day, and his eyes are now almost normally aligned - there is only the very slightest difference, and I don't think anyone other than myself and the doctors see it.

I'm sorry you had to hear those rude people - unfortunately there are some really insensitive people out there who have not been taught proper public behavior. I can say it generally gets better as time goes by, but unfortunately you may see it happen on occasion.

As for the back of her head, Bryson has had a couple of operations on the back of his, and it's still not perfectly round and probably never will be. But it's okay - he wears his hair longer because of his scar anyway, and no one's ever noticed. I wouldn't worry super bad - as long as your daughter doesn't have medical issues from it (like pressure or anything), it probably won't even be noticed by others...

[laurensmom]

You guys are the most wonderful people in the world. I HONESTLY don't kniow what I would do without you!! I'm so serious. Your words and kindness help so much. It's just different when you hear encouragement from people who are going through the same thing you are. I hate to admit I get so frustrated when my family says "it's not a big dea"l and "don't worry about it". I just want to say..oh yeah what if it was YOUR daughter then what would you be saying!!! But I know they are just trying to help.

You guys just took a really really bad day and made it a whole lot brighter!

[snickers9246]

Denise, I was going to say what Jen did about the back of the head being misshapen, that once she gets hair, like her scar, it won't be noticeable.

About the eye, we patched, started at about an hour a day, then up to 3-4 for a while, until Holly discovered she could pull the patches off. They told us to jsut leave her (this was at about 14 months) and we'll see how she does. We went last month and the eye corrected itself. The patching did help to get it working. She had the "lazy eye" one eye is near sighted and the other far sighted. He's checking her again in 6 months, but for now, it's jsut a waiting game. He doesn't think she'll need glasses or surgery, and he said if she did need glasses it would jsut be to even out the eyes and help her with adjusting her vision.

Lauren is gorgeous, if she ends up needing surgery we will be here. I have a sister who has both eyes all "crazy" she had surgery on one, and between the time she was supposed to have the second surgery (6 weeks later) her surgeon died. We lived pretty far North and couldn't get another Dr in those days. She had to do exercises, I remember us holding up things for her and patching. Her eye still goes a little crazy sometimes, but only when she's furious and isn't thinking to control it! :rofl I tell her I always know when she's angry! :adore She decided she didn't need the surgery to fix it, and is 30 and a beautiful girl, jsut like Lauren will be!! :)

Keep us posted and I'm here if you have any questions!! :hugg

[lucsdad]

oh denise, people can be so flat our rude! im sorry for you having to go through that! i agree with the others, hair will help cover up.
lucas has a severe astigmatism in his left eye. his eye was very lazy and turned out for the first 5 months. than i swear, one morning it was gone!
we cannot explain it, the dr's can't explain it. they are perfectly straight.
he was wearing glasses at 2months old. he cried whenever we put them on, so he never wore them much. now he doesn't wear any because we need a new prescription and frame size. our dr. says he'll need an eye muscle surgrey in the future, after his CS surgery.
hang in there, were praying for you and lauren!
God Bless You!
lisa