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.