Trying to walk

My new years resolution this year is to be more involved with everyone, Oliana's physical therapy, getting her walking, connecting with parents who have children who are blind, and updating this blog more often. When Oli was first born I was part of an online support group for parents of children who have micro/anopthalmia. I recently rejoined the group to reconnect with them and get new ideas for helping Oli. And sometimes just to vent my frustrations. Let's face it, no one expects this kind of thing to happen to them. I was recently talking with my dad and we were talking about Seth and I having more kids. I told him right now I don't for see that happening. I told him that it is two or three times more expensive and more work to have a special needs child ( I like that word more than "disabled child"). Disabled to me is negative. Anyways, my dad said "Yeah, one of Oli is like having three or four children". Very true. Anyway, the recent posts online have focused on other people with kids who are Oli's age or older not walking. Seems I'm really not alone in this quest. Right now we are really trying to get her to walk with her push toy, without yelling at me, and to stand by herself. Right now she is just too afraid to do it. I'll sit next to her and let her hang on to my shirt. I'll tell her to let go and she'll just get this terrified look on her face like, "YOU WANT ME TO DO WHAT?". I try to make her feel comfortable and tell her I'm right here. I know she understands but, she just won't let go without freaking out. Her arms will go straight out, she'll gasp and then cry. Like I'm not going to catch her. She's kind of in that scared stage right now. She'll be scared of new sounds especially if I'm not holding her. Let's just say that she's a little attached to me. All I hear, and all everyone else hears is "ma ma ma" all day long.
I need ideas on how to make her less afraid and more willing to walk and stand on her own. If anyone out there has one let me know. I know she has more obstacles to overcome because of her blindness but, I'm not willing to let her know that. I don't want that to stop her. I can't imagine how terrifying it must be to not be able to see what's in front of you or around you, but she's never known anything else. So if she doesn't know it she shouldn't miss it right. Wrong. It seems that she is definitely aware that she can't see. I just don't know how to get her comfortable being on her own. For right now we'll just keep working. It's also more difficult I think, because I have Kekoa. He does feel left out alot. I'll be working with Oli and he'll come up to me and say "I want to play mommy's game". I said what is mommy's game. He said " Holding hands and walking". I felt really sad then. He thinks I play with Oli more and he's too young to understand that I'm trying to help Oli. I try to explain it, but he is just to young to understand. I try to make him a part of the therapy and have him hold on to Oli. Yeah, that lasts about 2 seconds. Then he's running off laughing. If anyone has any ideas on what to do about Koa let me know that too.

One other thing I wanted to mention, I don't know if any of you know who Ben Underwood was. He was a young man, 16, who lost both of his eyes when he was 3 to cancer. He wore prosthetics and was on T.V a couple of times because of how remarkable he was. He rode his bike, played basketball, did everything that a normal 16 year old would do even though he was completely blind. His mother said that from the moment he woke up in the hospital and realized that he was blind she made him do everything any other child his age would do, despite not being able to see. He was a real inspiration. Sadly he died on January 19, 2009 from cancer. He will be greatly missed. Even though I didn't personally know him I feel a great loss. He was truly someone to be admired. He has a web site. I believe it's benunderwood.com. Sorry for the sad news.

Time for an update

It's been a while since I've written anything. Sorry. The kids are doing great! Growing up so fast as you can see from the pictures. Oli is doing well. She got a new eye on the right side last month that finally sits right in her socket. It looks really good. She went to the cardiologist a couple of months ago and her heart is now completely normal. That was great news! She also had another test on her kidneys. She still has some urine that backs up into her kidneys so she still has to be on the antibiotic but the doctor said it looks better on one side. She'll go back and have another test when she's 3 to see if she has outgrown it yet. The doctor seemed hope full that she would. We finally got her sleeping through the night almost every night. That is so much better for all of us!! I think I've talked about this before, but your sleep wake cycle is dependent on sunlight hitting your eyes and prompting a gland in you brain to produce melatonin which regulates when you sleep and when your awake. That's why its natural to sleep when it's dark and be awake when it's light. Since now we don't think Oli sees anything at all she doesn't have that cycle. We started giving her an over the counter supplement of melatonin. She takes 5 mg every night before bed. Ever since the first night she took it she has been sleeping normally!! Yeah!! No more getting up at 2am and staying up till 10am. She actually sleeps like a normal 20 month old. She wakes up on her own in the morning and wakes up from naps on her own. It's really helped with her energy level,her attitude and she's put on some weight. She finally 20 pounds! Such a little peanut. Tall and skinny.
Speaking of energy she loves to stand and walk around the house (with help). She can stand and cruise along the couch by herself, slowly. She can push her walker and she'll walk while holding onto my hands. She's still kind of stiff legged but hey, she gets there. She was in physical therapy every week but, my insurance changed and now we have to find a new therapist. She really made a lot of progress. She can almost pull up by herself. She just needs a little boost to get her leg out from under her.
So all in all everything is going well. Kekoa is getting so big. He's such a boy. He loves that "dune truck". That's what he calls it. Santa brought it for Christmas. He's so rough with it. The faster he goes the more reckless he drives. Oli likes to ride in it until he gets crazy and goes in circles. Then she's ready to get out! It's scary to think what kind of driver he's going to be. He wants to be a race car driver. Mommy hopes he changes his mind. It's funny because he will actually sit and watch car racing on T.V. He'll sit there for hours just watching the race. Ugh!! I hope he outgrows that too! That's when mommy finds housework to do. Hey, it keeps him occupied. Terrible 3's it should be called. He's still a great kid and loves his sister. So protective of her.
So that's what's new here. I'll try not to let it go so long before I write again. Hope everyone is doing well.

Oliana's first pair of eyes and her first birthday!!

Oliana finally recieved her first pair of prosthetic eyes in May. Right before her first birthday! We were so excited. The whole trip down to L.A. I just kept trying to imagine what my baby girl would look like with eyes. What a strange concept, huh. We thought she was only going to recieve the painted eye on the right side, but suprise, our occularist Beverly decided to do the left too!

She put the one that she had made for her right eye first. It was just such a surreal experience. I just kept starring at her. Oohhing and Aahhing. She was making faces at Seth and I like, what are you two googling at? She was just so beautiful. Even though I know she doesn't see me with them, it's really nice looking into them. I find that I don't focus on her eyes as much as I do her other features to tell her expressions. I still concentrate on her eyebrows and mouth to tell what she's thinking. They do make a difference in her appearance though.

We went outside the occularist's building after Beverly put in her right eye to wait while she constructed and painted her left eye. Seth and I could not stop ourselves from just staring at her. She just looked so different to us. I didn't think it would make that big of a difference, but it did. We went back upstairs and Beverly put in the left eye. As much as a difference as having one eye in, imagine what two looked like! It was just amazing. It took a while to get used to them. We were just so used to seeing blank eyes. I only wish she could see through them. We still do think that she can see some light. She squints in the sun, which is a very good sign!! We're happy with that.

For Oli's first birthday we had a small party at our house for her with family. She had two cakes. One was a flower and one was a heart with her name brailled on it. It was so cute. We put the cake on her tray and she heard us set something down. So immediately those little hands stretched out to discover what treat we had put before her. She grabbed a huge handful and shoved it in her mouth. Her eyes lit up and she just kept shoveling it in as we quickly sang happy birthday. There was no way we could take it away from her. She loved it!!

That night Seth and I took her to the Las Vegas Philharmonic. She really enjoyed that. She listened for a whole hour. When the music started she just sat so quiet and intent and then started bobbing her head. She probably would have listened longer,but the next set was really slow and the music was integrated with a narrative. Our Oli likes loud fast music. We had a really nice day and I think she really enjoyed her first birthday.

Heaven's Special Child

It's been a long time since I've been online and many things have happened...changed...dreams are becoming a reality. Oliana continues to flourish as the perfect little girl that I have always dreamt about. Funny now as I look back, I never realized what profound, unwavering love I would be able to show my children.

Oliana is almost 1 year old. Hard to believe, I know. Much as I love having a new baby around the house I don't think there would be enough money in the world to make me go back to the first few months of Oliana's life. She is growing to be such a strong willed, smart girl and yet she has such a sweetness to her that just melts the hearts of everyone who meets her. She has touched so many lives already and has taught us the importance of patience, determination, and not being prejudice against that of which we don't understand.

Many people told us when Oliana was born that she chose us to be her parents and now more than ever, as she gets older, I find that to be true. Here is a thought from another mother who has a child with a disability. It really touched my heart. It's funny because as I read it I thought, this could have been written for me!




THE SPECIAL MOTHER by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth;son. Patron saint.. give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint Matthew."

"Finally He passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see... ignorance,cruelty,prejudice..and allow her to rise above them. She will never be alone. I will be at her side every minute of the day of her life, because she is doing My work as surely as she is here by My side."

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Oliana and the Baby Food

Oliana has made huge accomplishments these past few months. Eating baby food was just one small feat for her. It may seem small for most people, but for a blind baby it was huge!! Not only can she not see her food or the spoon coming to her mouth, but she doesn't see other people eating and doesn't know that that's what everyone else around her is doing. For the first week that we tried she would just clamp her little mouth shut and wouldn't open for anything. Then after that she would push her tongue out and want you to put the food on the tip of her tongue, which, needless to say, didn't work very well. Finally, Seth just started prying her mouth open and shoving the food in her mouth. He would pry it open and say "open your mouth Oli" and put the food in. It sounds harsh, but it worked. After about a week of that she finally got it and all we had to do was tap her mouth with the spoon and say "open your mouth Oli" and she would. Now she loves her baby food! Good thing she catches on quick. She even grabs the spoon with her hands and puts it in her mouth to try to feed herself now too. She reaches her hands out to find my hands and when she finds them she finds the spoon and then takes over. Its quite neat to watch her figure it all out. She also has learned that I put the bowl of food on the tray. She puts her hands on the tray and finds it and has great fun playing in her food.

We started reading braille books to her. I read them and guide her hands across the braille as I read. At least I do sometimes. Sometimes she does it herself. I sit her in my lap and put the book on her lap so her arms and hands are free to roam the pages and she wishes. I put her hands on the pages so she knows right away that we are going to be reading a braille book and you should see her. Her little hand just starts waving back and forth back and forth across the page. Its the neatest thing. We only have a few braille books, but I would say that they are definitely her favorite.

Our latest trip to LA was exciting too. She got a flat conformer, or one without a peg in her right eye this time. So she's got flat ones in both eyes now. So nothing sticking out of her eyes anymore. They look really good. Her right eye is so much bigger now. It's almost the same size as the left. Our ocularist, Beverly, said that she should get her prosthetic eyes at about a year of age so only 5-6 more months to go!!!!! YEAH!!!! She's going to get green I think. Just like her Daddy.

One more piece of exciting news. She's just about sitting up. She can sit for about 10-15 seconds before she falls forward. Almost though. I'll keep working with her. Kekoa said her name for the first time today. He called her O-ee. How cute!! He's shown much more interest in her now that she's doing a lot more. He's always giving her his toys or his blanket (and he doesn't ever share his blanket with anyone). He still likes to kiss her and hug her. He's always very nice to her. I'm sure that will change once she starts taking his toys!! I'll hear "Mom O-ee won't share" HA HA!!