"Fixing" Oliana

I've recently been involved in a conversation about "fixing" Oliana. It seems strange to me that most people I encounter what to fix her. I don't consider her broken, but everyone else wants to change her. They ask me about eye transplants and assure me that in the future she will be able to see. I think the real problem is accepting something that is out of the norm. This world was created for sighted people and people who can see just can't imagine what it would be like not to. Anything that is different for us is very scary. It's alright to be scared and to worry about her and want the best for her, but she will have every opportunity available to her. While I appreciate people's concern we don't really need to be concerned about changing her. Everybody is born with imperfections. Oliana's is just more visible.

I am getting tired of having to defend her and her blindness. I constantly am having to reassure people that she is okay and it is okay that she's blind. I don't think she'll ever be able to see and there really is nothing wrong with that. I don't want her to grow up with people insisting that she will be sighted one day. Not only to give her false hopes, but I don't want her to think of herself as a "broken" person. She is who she is and she will always be.

Right now she is telling me to get off the computer because my typing is keeping her up. Even though she is in the other room!! She keeps grunting and groaning when I type, so farewell. Sleeping beauty needs her sleep!! Thanks for listening.

KEKOA

Ten years ago if someone would have told me I would have two kids I never would have believed them. I couldn't picture myself having ANY kids at that point. Now, to have two perfect little people in my life...Two people I've known such a short while, but who have changed me forever. I don't think I can begin to put into words the love I have for them.

Kekoa is growing up so quickly. That first year seemed to last a lifetime (not the easiest baby) and now he's almost two. He's talking a ton and is a very opinionated little boy. He sure lets us know what he wants and what he doesn't. I think he's going to be a very knowing and compassionate person. Sometimes when I look into his eyes it feels as if he knows everything that I'm thinking and feeling. I get a sense that his soul is much older than he is. There is something very special about him. He's proven that to us with Oliana.

I picture him in the future as a power house. Always driving forward trying to accomplish his dreams, not letting anything get in his way. It brings tears to my eyes thinking about how he's going to help his little sister. Not by doing things for her, but just by being who he is. I spent a lot of time in the beginning feeling sorry for him. Sorry that much of my attention would be focused on Oli. Sorry that he was going to have to witness humanity at it's meanest at such a young age. I'm now starting to feel that this will give him opportunities and life lessons that he may not have gotten had he had the "normal" family. Lessons I may not have taught him otherwise. Lessons I may have overlooked.

He'll learn to love himself and others for qualities not visible on the outside and that the "eyes" are not always the windows to the soul. He'll learn that beauty is not always in the eye of the beholder but rather in the heart. He will learn to appreciate the world through other senses to identify with his sister. He has already started to do this by closing his eyes and feeling his way through the house. Most importantly, he will learn that he can achieve anything he wants in life and not make excuses for what he doesn't have. I hope he'll be confident and never feel sorry for himself or his sister. I hope he learns that without grief in our lives we never fully appreciate happiness. Most of all I hope he knows how much I love him and how proud of him I already am.

Many new things

Hello everyone. Sorry it's been so long since I've posted. Lots of new things have happened in a month. Oli got her second set of conformers last Tuesday. The conformer on the right side is now twice the size of the old one. It has stretched a lot!!! The ocularist left the same size one in the left side in hopes of catching up the right to make them more symmetrical. We also saw the geneticist and she said that Oli does not have a syndrome. It was a gene mutation that caused her eye condition, along with her other abnormalities. She also discovered that she has a small pituitary gland. She said that we will have to monitor her growth carefully and make sure she is continuing to grow. If she doesn't follow a normal curve that's okay as long as she follows a curve. Otherwise she may need growth hormone which is a daily shot. Lets pray for the best. She said the mutation was either on the sperm or the egg and there would be a 5% chance that we would have another baby with the same condition. Oli however, has a 50% chance of one of her babies having the same problem because it is a dominant gene in her. And yes, she can have babies with 2 uterus's. She would just be at risk of going into preterm labor because each uterus is half the size of a normal one and the baby may not have enough room to grow to full term. She did give her hope though, because with gene therapy they may be able to remove her egg, fix the mutation and re implant the egg using in vitro fertilization. AMAZING!!!!

We also found out when they re-examined her kidneys that she still does have hydronephrosis (fluid in her kidneys) and kidney reflux. Kidney reflux is when the fluid in her bladder backs up her ureters (the tubes that connect her bladder to her kidneys) and into her kidneys causing them to dilate, which in turn causes the hydronephrosis. The radiologist said that she should grow out of this and her anatomy is normal. She just has to be on a long term antibiotic because she is at increased risk of having kidney infections. We will be seeing a urologist regularly to monitor them. If she does not grow out of the reflux by the time she is 5 they will do surgery to correct the problem.

While we were in LA last week we took the kids to the ocean. I think Oliana really enjoyed it. She was fussing before we got to the beach and as soon as she could hear the ocean she calmed. She was so content while we were there and kept turning her face into the breeze. Kekoa also loved it and never wanted to come out of the water. Our little water baby.

Oli continues to flourish and is more fun every day. She is now smiling. She has a little stuffed musical dog that always makes her smile. She squeezes him and pulls him to her mouth. She is getting better with her hands. She likes to touch our faces too which is really neat. She is finally able to "see" her mommy and daddy. It's funny because she'll throw her hand up and when she finds our face she just leaves it there clenching and unclenching her fist. She has a play gym that I put in her playpen and attached a kick mat to the end that plays music and makes farm animal noises. She really enjoys this too and spends a lot of time in there kicking her feet and batting at the toys hanging from it. It's in the play pen to make her feel more secure. Sometimes when she's lying somewhere that doesn't have sides she gets scared when she doesn't touch anything when she puts her arms out. She'll get really stiff and hold her breath. In the playpen she has sides to come in contact with when she throws her arms out. This is important for her development. Plus I want her to feel calm, secure and in control while she is playing. She is cooing also. She "talks" way more than Kekoa did. She just babbles away, especially when she has her hands in her mouth. It's funny.

I'm feeling more comfortable in my new shoes these days. Being the mommy of a blind baby doesn't feel so overwhelming. It feels special. I have my work cut out for me, don't get me wrong but Oli shows me more everyday that what I'm doing is right and that she loves me and trusts me. She may not see where we're going but she trusts me to always keep her safe. She doesn't turn to the sight of me but she can identify my voice in a room full of people. And even though I know that she'll never see how beautiful she is, I'll be able to show her in so many different ways. I don't know why God chose me to be her mommy but I am truly thankful that he did.

Mr. Haddad- Oli's ocularist

We went last Tuesday to L.A. for Oli's first visit with the ocularist. It went very well. He got conformers in both her eyes. It was a little harder on the right side than the left but he was successful with both.

A conformer is an acrylic apparatus that will stretch the tissue of her eye and will hopefully allow her to wear prosthetic eyes. It is made out of the same material as a hard contact. It is clear and fits under her eyelid and over her eyeball. It is a little uncomfortable when Mr. Haddad is putting them in, but once in they don't cause her any discomfort. (Believe me, she would let us know if they hurt!!) It is suppose to stretch the tissue but there is no conclusive research studies suggesting that it promotes bone growth.

He said he is very happy with her first visit. Although her eyes will never look completely normal and will always be a little small he thinks we will be successful in getting prosthetics in. I told him that I don't have any expectations. I know she will be beautiful no matter how big her eyes are. He said that as she gets older we may need to see an ocular surgeon about putting a permanent implant into her eye socket. This is because eyes only grow to the age of 3 years. With micropthalmic kids their eyes either don't grow at all once born or only grow a small amount. So as the conformers stretch the area around her eye, her eye ball gets smaller and smaller in her socket and is farther and farther back in it. This results in the conformer or prosthetic eye getting thicker and thicker to fill the space. A permanent implant would allow the prosthetic to be thin and less uncomfortable. It would be a surgery and we will wait until she's a couple of years old to decide if this would be right for her. It will also depend on whether or not she has any light perception.

She doesn't seem to mind them at all even though now she can't close her eyes completely. There is a little stem sticking out so she can't close them. The stem is there so that Mr. Haddad can grab on to it to take them in and out. They are so small there would be no other way to do it. It looks a bit archaic though, to have something sticking out of her eye. At least they're clear. She won't have to wear stem conformers forever. Just till they get bigger. It's really neat to be able to see her eye lid and eye lashes on the left side. I can see the iris better now too because the clear magnifies it. She has a perfect little blue eye. We also get to pick the color of her eyes when she gets her first pair of prosthetics. How lucky am I? It isn't all mommies that get to pick their baby's eye color!!!!

MOST FREQUENTLY ASKED QUESTIONS

#1 WILL SHE BE ABLE TO SEE?

I don't think that she will be able to see. She is missing her optic chiasm and has very small optic nerves which they don't think will function. She really doesn't have much of an eye on the right side either. Only time will tell. When she gets a little older we will know more by what she reacts to. When she is much older she will be able to tell us.

#2 IS THERE A BLIND SCHOOL IN LAS VEGAS?

No, there isn't at this time. We will be moving states when she is a little closer to 3 years. There are a lot of states that have schools and we'll just have to do our homework to decide where we want to go. It has to be someplace that is good for the whole family.

#3 WILL SHE READ BRAILLE?

Yes, she will. We will all be learning braille. She needs to be exposed to it now just as a sighted baby is exposed to letters and words. A sighted baby has more of an advantage because he/she can see letters in books, signs, t.v. ect.... We will be getting braille children's books for her now so she gets to feel the braille letters and words and is exposed to it as early as possible. We can also get a braille label maker and label things in our household with braille. The more the better. Only 25% of blind people are employed. Of that employed 90% are able to read braille. This seems to be the key. Just as we would not let Kekoa be illiterate, we will not let Oliana.

#4 WILL SHE BE "NORMAL" OR WILL SHE BE MENTALLY RETARDED?

She will be normal. There is nothing wrong with her brain and nothing suggestive that she will be anything but smart.

#5 WILL SHE WEAR PROSTHETIC EYES?

Yes. We will be seeing an ocularist regularly to fit her eyes with conformers. These conformers will stretch her eye sockets and prepare them for a larger and more normal looking prosthetic eye. Don't call them glass eyes because they are not made out of glass. Most are acrylic. Mainly I just don't like the term "glass eyes". It sounds scary. If you want to see pictures go to the MAPS website that I have a link to and click on the info for conformers and prosthetics.

#6 DID I KNOW THAT ANYTHING WAS WRONG WITH HER WHILE I WAS PREGNANT?

No. Some people that have babies with micropthalmia do find out about it while they are pregnant. I, unfortunately, was not one of them. The ultrasound tech should have measured her eye sockets but failed to do so. If she would have measured them properly I would have known that they were abnormal because they would have measured small. This would not have changed anything however, I would have just been a little more prepared and it wouldn't have been such a shock. It would have made those first 3 days a little easier.

#7 HOW AM I DOING?

I am fine. I will not break down if you ask me questions about her or ask how she is doing. I just had a baby and am very excited about that. She is just fine. She can't see, but she is fine. It's okay to ask questions about her and to be excited for me. I wouldn't trade her for the world. I'm not ashamed of her and I don't like it when people just ignore the fact that I had her. Which some people have been doing. She's a wonderful, peaceful, happy baby and I am proud of her.