Elena

Elena

Friday, October 1, 2010

Playing catch up

Oh my gosh I can't believe it's been 2 months since I lost posted! Wow I'm really bad at this blog thing. lol Well probably the biggest thing that's happened in the last 2 months is Elena TURNED TWO!!!! My little baby is growing up so fast.

We had a very nice little part at home with only family coming, although with Damon having such a large family is was no small party! My grandparents and even my dad got to come which was a totally shock but really nice. My mom didn't come though because she was in the hospital recovering from back surgery. She's doing great now, by the way. Elena got a bunch of gifts including a Many Kisses Elmo (which she LOVES), a couple alphabet toys, a ridiculously cute outfit (which is just a tad too big), and a super cute monkey blanket my mom made. You can even feel the fur on my monkeys! I'd post some pictures but my sister has all the pics on her camera and she has yet to email them to me.

Elena is finally beginning to communicate with us and it's awesome to see her language skills grow every day.

to be continued...

Thursday, July 29, 2010

Elena's Books

I now have a new blog. Please check it out.

http://elenasbooks.blogspot.com/

Sunday, July 25, 2010

Tantrums

Sorry it's been so long since I last wrote. It's been kind of crazy over here. I just got back from spending a month at my mom's house. Elena is doing great. Her speech has gotten 10 times better and she's just as cute as can be. She has started throwing tantrums if you don't give her something fast enough, say no, stop singing or reading to her. She really trows tantrums when there are other people around, even if i am already giving her my full attention.

So maybe you, my reader (if anyone is even reading this) can give some advice. How do I get her to stop throwing tantrums and how to get her to just stop doing them in the first place? When she throws a tantrum, she cries as if someone is hurting her and arches her back. She'll also try to climb up on me. If i try to give her a toy to calm her she just pushes it away forcefully. I've tried letting her cry but she'll keep going for a half hour or more. I tell her that I'm not going to pick her up if she is crying and i try to talk to her to calm her down. If she gets quite enough that I do pick her up I tell her that I will not continue to hold her if she keeps crying. I've also tried putting her in timeout in her bed for a couple minutes but that just makes it worse. I know she doesn't understand a lot of what I'm trying to explain to her but that's all I know to do. So any help?

Sunday, May 2, 2010

ELENA WALKED!!!!!!

20 months old and she finally walked!!! I am so excited! Last night, Elena was leaning again the wall, standing up. Her cane was leaning against the wall too. She found her cane and suddenly decided to let go of the wall. She stood for at least 5 seconds just making sure she could do it. She was totally stable. Then she walked about 4 steps to the couch. I couldn't believe it! And I had left the camera upstairs!! I was so excited that I put her back to the wall, hoping she'd do it again. She let go of the wall again, this time for about 10-15 seconds but she didn't walk.

After waiting for like 10-15 minutes and doing everything I could to motivate her to come to me, she still wouldn't walk again. I decided that was good for tonight and we'd try tomorrow. As we were walking to her chair so she could have dinner, she started walking and standing by herself again! She only did a few steps at a time and she walked in circles but it was awesome. She no longer had an interest in food so we walked up and down the living room for like 30 minutes. She stilled used my help a lot but she also did quite a bit on her own. She even laughed while walking and threw a fit when I made her stop.

I am SO proud of her! Hopefully she continues with this and doesn't get scared and quit. She has another physical therapy appointment in 2 weeks. If she continues like she's doing there's not telling what she'll be doing in 2 weeks!!

Oh I almost forgot to say, as long as Elena had her cane in her hand, she would walk. It didn't even have to be touching to floor. She just had to be holding it. I guess the cane gives her the confidence she needs. :D

Tuesday, April 13, 2010

Time has Flown!

My goodness I can't believe it's been so long since I last wrote. Life has caught up with me and I haven't done so well with balancing it. So much has happened. It's all been very exciting and very exhausting.

Elena got her first cane! It's a free 25 inch cane from the National Federation of the Blind. It's so cute. First she would only hold it if my hand covered her hand but now I have gotten her to hold the cane in her right hand while I hold her left hand so she can walk. She still can't walk by herself but Damon (husband) did get her to walk a few steps on her own. It happened once and only once. He did it by holding her around her waist while she walked. Then he let go and she kept going, until she realized what he had done. Now she leans back on your hands like she's saying "I don't think so! You're not letting go again!"

Elena is an avid reader. YAY! She loves reading. As soon as I ask her if she wants to read, she immediately turns around on my lap like she's ready to go. She rubs her hands on the pages, turns the pages and even "reads" the book to me. Her babbling sounds like words. I can even pick out a phrase or two sometimes! She now knows the word "again" and uses it ALL the time! She'll read the same book a thousand times.



Now for the bad news. Elena has been having ear infections at least once a month since around November. They get really bad and last time she had a 103 fever. We finally got her in to a Ear, Nose and Throat specialist, today. He said her ears are full of fluid and so swollen that nothing can get through, not even the Wally's Ear Oil that I bought at an herbal store. People tell me this stuff is a miracle worker. Anyway, because of all her issues she will be getting tubes put in her ears next Friday. They will have to put her to sleep to do it. Usually they don't suggest putting tubes in ears of kids so young but Elena has them so frequently and so bad that she has to have them. One of my brothers had a lot of ear infections when he was little so my parents put tubes in his ears. I think he was around 2. They said he never had an infection again. Please pray for Elena to have the same results!

Monday, February 22, 2010

Video

This is a video from June 2009. I make a noise that Elena thought was just SO funny. Thought I'd share the laughs.


Wednesday, February 17, 2010

Time to brag


As all parents do, and should, I'm going to have a brag session for a minute. Elena has been doing do many cool things that I just can't help but shout it out to the world, especially since her vision therapist said she's never known a baby at her age (18 months) to be able to do some of the stuff she's doing, regardless of vision problems!! I'm so proud! (Can't ya tell?) lol

Hhhhmmm where should I start? I guess...words. Her vocabulary is growing every day. She's such a fast learner. You only have to tell her something 6-12 times and she's got it for life! I've been trying to keep track of all the words she says like are recognizable. Here they are: shoe, wipes, cereal, star, square, circle, squish, bless you, push, meow, moo, chair, simpsons (Yes she is a Simpons fan!), dada, eat, done, whats up, awesome. There are MANY other words that she says that aren't understandable unless you hear them in context and hang around her all the time. And of course all the words she does say have a "accent" to them. For example, "done" is said "DA!" and "meow" sounds like "ow". She copies almost every word anyone says.

Elena can also tell you what a cat, dog and cow say. Today she learned what a duck says and almost has it down. She can name many body parts including head, ear, mouth, nose, shirt (yes i know that not a body part), tummy, foot, and diaper. She also grabs her foot when you ask her where her shoe goes. If her give her a brush she will stroke her head a couple times.

Elena not only knows the names of shapes (circle, square, star and almost has down "triangle") but she can also pick them out of her box of shapes, when asked! Her therapist said she doesn't know any at this age who can do that. Today we had a funny experience with the shapes. Elena was holding a toy cow that has shapes on the side of it. Her therapist asked her to bring it to her and show her what she had. Elena turned around toward her. :) Then I asked her where the circle was. Instead of finding the circle on the side of the cow, she immediately pulled herself up to her toy box, found her box of shapes and pulled out the circle while naming it!! It was SO funny and I was SO proud! She's my little baby genius!

She can climb the stairs all by herself and, until she discovered the wall, would zoom up the stairs. She is so close to walking on her own that I just can't stand it. We got her a small pieec of PVC pipe to use as a cane until we can get her one. She seems to be more stable holding that than holding my hand while walking. I keep expecting her to let go of my hand and start walking around the room like it's nothing.

Elena loves to read. Well she probably likes turning the pages more than reading. She turns them so fast I can't even finish the page! On her touch-and-feel books she knows where all the touchy things are. In one of her books it talks about a lambs tummy. I don't even have to read it and she immediately touches her tummy!

Well I think that's enough bragging for one day. I will hopefully have some video of her awesome skills soon. She senses when the camera is out and stops doing cute stuff. Goodbye for now!

Friday, January 29, 2010

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.

Thursday, January 21, 2010

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!

Tuesday, January 19, 2010

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. :)