For Laughs

This video is from early December 2009. Elena thought it was funny that I laughed at her.

Therapy

This week Elena had 3 different therapist visit, nothing unusual for her. With a new school schedule and recovering from the holidays, January has been a crazy month. I have had to cancel several times cause the family was sick, especially Elena. I even double booked this week! I am looking into getting a Smartphone so I can more easily keep track of everything. I'll probably get it for my birthday, in 2 weeks!

So this week was development, vision, and physical therapy. Wednesday I accidently booked vision and physical at the same time. It turned out ok though and Elena did great. She did a lot of walking around with her lion push toy. She loves that thing. We got it for her 1st birthday but she hasn't been able to use it until the last couple months.

Elena does the cutest thing with her loin. While holding onto it, she will walk to the front and push the nose so it will play music. Then she goes back to the purple handle on the back and says "Ush! Ush!" as she pushes it across the room! SO CUTE! I tried getting it on video but the camera was being weird. I'll try it again next time she does it.

Today Elena had her developmental therapist come. She did not stay the whole hour because Elena got really tired and cranky. Elena played with shaped "blocks" and was able to pick out the circle when I asked her to. She called it "circir". :D The circle is definitely her favorite. She didn't seem to interested in the others (square, star, cross, triangle). When I asked her to find the square she put her hands on her cheeks and squish them together while saying "Squish! Squish!" LOL. I guess square and squish sound a lot alike. Squish is something she loves to do. She thinks it's so funny.

I'm glad Elena has the opportunity to have therapists but it's takes up so much time. I'm so glad they come to the house. That's a big time and hassle saver right there. I am very happy that her therapists think Damon and I are doing a great job and almost every time they comment on how on top of things I am. Often they don't even have anything for me to be working on with her because we're already doing it. A few of them think I should become a therapist since I seem to have a natural gift. I don't know if it's true about the gift but it sure feels good to have someone tell me I'm doing something right.


NOTE:
This is for anyone who wants to know where I got stuff, etc

• The therapists are from a program called Kids on the Move. Their office is on Orem, UT.
• The push toy is from Walmart. It's about $35. There are cheaper ones (around $20) but this one seemed to be more stable.
• The shape blocks are from Walmart. They are $10.
  

Light at the end of the tunnel

I am beginning to see a light at the end of the long, lifeless tunnel called medicaid. Elena hasn't had any insurance since she turned one. We have been fighting for it but are fighting a losing battle. The Medicaid office not only doesn't know what they are talking about half the time but they also don't seem to care.

My most recent talk with medicaid was anything but helpful. And I'm sad to say that getting Elena on Social Security Income has actually causes more problems than it's solved. Because the government now classifies Elena as disabled the medicaid office automatically put her on Disability medicaid which has an income limit of $1500 a month BEFORE taxes! What three person family can live off of $1500 a month BEFORE taxes?!?! It's outright insane! I asked them if we could we put on a different medicaid program that has a higher income limit and they said if they did that they would have to count Elena's SSI as income and we would be put over the limit. Keep in mind that when we got Elena on SSI they promised us that she would automatically qualify for medicaid, something which the medicaid office denies is true! So let me ask this, WHO THE HECK KNOWS WHAT THEY ARE TALKING ABOUT!?!!?! And when medicaid finally said we could get insurance they said we'd have to pay $180 a month for it!!! If I had that much money I wouldn't need to be on medicaid!!

*deep breathe* Sorry for the rant...back to the good news. Anyway, so yesterday an angel from heaven called me, AKA-Ben Norton, the best childrens physical therapist ever! Ben, being the wonderful man that he is, called just to see how Elena was doing. Keep in mind this was Ben himself, not an office assistant. (We had to stop going to him when Elena turned one because of not having insurance.) I told him she wasn't make much progress and that I'd LOVE for her to go back to him but we are still fighting insurance and don't think we'll get it. He immediately said call these people and these people and these people. I was like THANK GOODNESS! He told me a two places to contact about insurance and another place that gives free legal services to people with disabilities in case we believe we aren't getting treated right. Dang straight I'm gonna call all those!

The insurance battle ranges on! Cross your fingers for us. I only have one thing left to say, THANK YOU GOD FOR DOCTOR BEN!

Intro

Hello everyone. My name is Kelley. I'll be 22 on February 11th. I am a student at Utah Valley University. I am studying to become an Elementary school teacher. I will probably become a braille teacher too. I hope to one day open my own business. I love to write and have written a childrens book that I hope to publish soon. I am married to a building inspector I met in dance class at school.

My angel is Elena. She will be 17 months old at the end of the month. She is the most beautiful little girl ever, and I'm not just saying that cause she's my daughter. :D She is always smiling and is so calm. She loves playing and rocking and is just a joy to be around. She always makes me smile when I'm having a bad day.

I found out Elena have vision problems at her 2 month check up. After many months and many tests we found out that she is totally blind. She was diagnosed with Optic Nerve Hypoplasia. There is nothing wrong with the eyes themselves but the nerves in her eyes did not fully develop so they can not carry light signals to the vision part of her brain. One doctor thinks she might be able to see super bright light if it's right in her face but that's only a guess. The doctors don't know why this happened and there is no cure. They also don't know if it will happen again when we have more kids. (So cross your fingers please!)

Since the day we found out, Elena has been seeing several different types of therapists. Because she can not see she has been delayed in things like rolling over, crawling, walking, playing with toys, etc. The therapists are doing a great job and I am looking forward to the day she will be running around the house with her little white cane.

She had an MRI of her brain around her first birthday and will get one every year around the same time. The MRI showed a couple minor things but the doctors couldn't tell what, if anything, was affected by these abnormalities. Her growth hormones and thyroid were also checked, and will be checked yearly. She is small for her age and the tests showed it's because her growth hormone levels are a little low. For now, we'll just wait and see what happens. I'm crossing my fingers she won't need hormone shots when she gets older. (One side affect of ONH is hormone problems like not producing enough thyroid, growth hormone or hormones that start puberty.) Her thyroid looks fine right now, thankfully. I wouldn't be surprised if that changes though. Thyroid problems run in my family.

My Blog Goal

So this blog is something I've been thinking about for awhile. I don't think I'm unquie or even that interesting but as a new mom going through some tough times I have searched for people who are going through the same thing. I am not only trying to figure out this whole mom thing but also trying my hardest to learn about blindness. My hope is that someone who is in a similar situation will come across my blog and it will give them reassurance that someone else is going through the same thing. I am not perfect. nor do I claim to know all the answers. I just want to help.

You will see as you read that a lot of my blogs will have to do with normal parenting issues and that should be no surprise. My angel is just like anyone else, except she does things a little differently. I love her with all my heart and pray every day that I'm doing right. Just as I am sharing my knowledge, my ups and downs, with ya'll I would love to hear of your own parenting trials so please comment. Knowledge is power. :)