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.