Lazy Eye

So yesterday Natalie had her 6 month check up with her eye Dr. The only reason we ever took her to the eye Dr in the first place was because she had such a hard time walking with out falling off edges. We thought she had a depth perception problem. The Dr gave her glasses 6 months ago and Natalie wore them, but then she wouldent keep them on. The Dr told us it wasn't a strong prescription and if we felt like she didn't need them then she didn't have to wear them.

Well yesterday when we went in for our check-up I told the Dr everything was fine with her vision as far as I could tell and she wasn't wearing her glasses and she was doing well. The Dr started looking at her eyes and she told us that Natalie has a lazy eye, she needs to wear her glasses and we have to put eye drops in her good eye everyday so she is forced to use her bad eye to strengthen it. If it doesn't get better in three months then she may need surgery.

So not what I was expecting for our check-up at all. I am really not looking forward to holding her down every morning and putting stingy eye drops in her eye.

She has an appointment to see her neurologist on the 10th. Hopefully her test results come back before we see him. It would be nice to finally know if she has Episodic Ataxia Type 2.

Natalie is doing much better with her speech. The other day we were driving in the car and she called my name from the back seat to say 'Hove you' which means 'Love you'. I almost cried. Then while we were in the Dr office Ben was joking around with Nat, he asked her if she could say opthamologist, and then Natalie proceeded to say 'Optamommy'.....We both just stared at each other in shock.


You can see in the pic below how her left eye is crossed. The pic was taken the past summer. My mother in law AND my mom both said they thought she had a cross eye then.

Deleted

I decided to delete my previous post. I was (and still am) really excited about it but Ive decided to keep it all to myself! ha ha

So I will be posting a new blog here soon about Natalie and other life updates. Yay :)

Peas

My kid must be the only kid in the universe that when given a bowl a beef stew proceeds to pick out all the peas and string beans first. She loves her veggies!

Episodic Ataxia Type 2

I know I have not posted in a very long time. Its horrible. But I guess Ive been too busy with life to blog about life.

In recent news: Natalie went in for a check up with Dr Benko who is her neurologist. He watched new video of her seizures and he came up with a new 'working diagnosis' of Episodic Ataxia Type 2. From the research I have done this is a pretty rare disorder less then 150,000 people in the united states suffer from this. It is actually a gene mutation that occurs in the cerebellum. It is a neurological disorder and the likelihood of a parent passing it on to the child is 50%. The 'attacks' can be brought on by stress, fatigue, caffeine, and alcohol. So this explains why Natalie has seizures at the end of the day, she is tired. She also had chocolate or caffeine before an attack. So no more chocolate or caffeine for her. Poor baby. These attacks can last anywhere between 20 mins to several days.

The good news is that when she has one of these attacks it is not causing any brain damage. She also no longer has the label of having epilepsy. So hopefully she wont have as many restrictions on her as Ben has had. She has also been taken off Keppra completely and she is doing very well and learning new things everyday. Dr Benko did want to put her on another medication. We tried it for a few days but the side effects were horrible. I had to make a decision as her mother to take her off it. The benefits just didn't out weigh the risks.

So now that she is off that medication she is all back to normal now. We may try it again in the future but she is just to little right now. The Dr did say that there is a genetic test we can get done to know for 100% assuredly that she has Episodic Ataxia type 2. I am planning on getting that done very soon.

Her speech therapist is still working with her to say new words so far I think the newest words are 'Juice' miey (for missy) weetie (for sweetie) min (for cinnamon) she says cheese, and mommy, daddy, na na, bop bop (for pop pop) goggy (for uncle tommy) meow (for cat) neh neh (for horse) NO ( for just about everything) uh huh (for any question we ask her) Oh man, Oh no!

And I swear her first sentence is 'oh no mommy!' That is 3 freaking words people!

She loves to carry her purse to and from the car. She grabs her purse and says 'Bye bye' and walks towards the front door. She loves cats and she always wants us to draw cats on her magnadoodle. She loves to RIDE! I take her horseback riding about once or twice a week and she LOVES it. She gets really upset if I ride without her. She also has a mini tantrum when its time to get off the horse. So I try to distract her by feeding the horses treats. She loves doing that too. We usually just walk around the arena but I decided we would try and trot and Natalie had a blast! She was giggling the whole time. She loves to hold the reins so I usually have to steer with my legs to keep the horse going the right way. I look down and ask her "Do you got your reins Nat?" Then she grabs them up. She gets jealous when we go watch Tommy do Team Penning and she can't ride. She pouts the whole time. I think I have a little cowgirl on my hands.

Na NA and Pop Pop spoil her rotten. She has got them wrapped around her finger. Pop pop has started coming in the kitchen door when he gets home to avoid Natalie so he can at least get in the door and change his clothes before she demands to be held so she can squeeze his ear.

Ben starts school Aug 31st. Its very scary and exciting at the same time. Pray for him. He needs it.

And what about little ole me? Well not much. Natalie keeps me busy with Speech therapy, Physical therapy, constant Dr appointments, and documenting all her seizures and medication intake. Then we have fun stuff we do like painting and playing with her toys.

I'm getting back into horses since Mom and Tommy have 3 horses now. I borrowed a English saddle from my old teacher. I really hate western saddles. So thats my hobby that keeps me sane. Everybody needs a hobby :)


Natalie at the Hands on Museum in Gettysburg. She was a pioneer girl! Ya'all come in for dinner now!




Natalie liked doing laundry civil war style. She likes doing laundry 21st century style too!

Such a Good Day

So today was the first good day in a long time.

First things first. Natalie woke up this morning and was in a really happy mood. Her diaper was also dry. We have been practicing using her potty chair and this morning was the first time she went pee in her potty! She was really surprised when the potty sang a song to her after she went tinkle. She jumped up and closed the potty lid. I was so happy/excited and I gave her a little piece of toilet paper to put in the potty cuz that is her favorite part.

Then Ben had a job interview today! The first one in a long time. So we will see how that works out.

I took to a church thing this afternoon and Natalie and I were waited out in the hall for him. While we were waiting Natalie kept pointing to the artwork on the wall of Jesus. Then there was a picture book with a bunch of LDS artwork in it and Natalie kept flipping the pages and when she came to the picture of Jesus, she said Jesus. SHE SAID JESUS! I was so excited! She is so smart.

Then we went and visited Nana at work and she was being cute for everybody in the office. After we left the office Rebekah took us out for ice cream and Natalie got her own vanilla cone and sat on the bench and ate it all by herself like a big girl.

When we came home it was still nice outside so Natalie, Daddy, and I all played together in the back yard. She kept sliding down the slide squealing with delight. Then she pointed to the trampoline and after we put her up there she was bending her knees trying to jump saying 'Jump Jump'

So this blog is really all about how great our day was today. I really want to be able to remember all these special moments in her life, cuz its just going by way too fast!

America

The other night my parents and I took the babies to an Equine Theater show. It was really neat and Evan couldn't take his eyes off it. He was uncharacteristically still and focused. Natalie loved listening to the music and she was pointing to the horses. The only part she didn't like was the jousting. I think it scared her a little.

Before the show started they had a woman come out and sing the National Anthem. Of course I'm like "Oooo no" I ALWAYS cry when I hear the National Anthem. So at least it was dark in the arena and everyone stood up, but I couldn't because I had Natalie on my lap. So I was pretty covered.

I can remember when I first moved to Germany they had the summer Olympics in Greece, and OF COURSE the would play the National Anthem all the time. So I would be all alone in my apartment in the middle of the day in a puddle of tears. Before I moved to Germany I never really got emotional about the National Anthem. But being so far away, missing my family and all the comforts we enjoy here really brought it out in me.

If you have never lived outside this country for an extended period of time I would recommend you do it before you die. I think it should be a requirement that all young people live outside the states for a period of time. I think that more people would appreciate what they have so much more and stop whining.

I was up really late last night unable to sleep because I was worrying about how hard things are for us right now. It was the first time in a long time that I got down on my knees and prayed all alone in the dark. I really hope the economic situation in the country gets better rather then worse really really soon.

Even though things are super tough right now I'm always repeating over and over in my head 'Things could be so much worse, we are so blessed' it has become my mantra. I know that my heavenly Father won't give me anything I can't handle, and I am so thankful for being born here in the United States of America.

Natalie Updates

So my sweet little girl is growing up! *sniff sniff*

I keep telling her she has to stay little but she doesn't listen to me!

Anyway here are some pics of her at cousin Joy's 1st birthday. On this particular day she was in such a happy mood. We have been decreasing her medication little by little and it seems to really be bringing out her personality. She seems more alert and active. Usually when we are in a room full of people she is really shy and clingy. But at Joy's birthday party she was so friendly and happy. On the way home Ben and I were like 'Whoa we've never seen her like that with strangers'. Rachel told me later on the phone that she was shocked Natalie let Melissa pick her up since Natalie doesn't really know Melissa at all, and Natalie was happy about it and smiling.

Its unfortunate that Natalie needs to be medicated because of her epilepsy. But I know she needs it to keep her seizure free. I just wish it didn't make her groggy and grumpy. Such is life :(

Such a happy girl! She looks so grown up!

This is what she does when she is posing for the camera. She thinks it makes her look cute for pictures


More photo shoot squints

Can you give me a chip please?

I can't believe she is 19 months old! Time goes by so fast when they are little.