Its been much too long

So I realized today that I have not posted on this blog since I started working at 911. It is AWESOME. But I guess I don't have as much time for blogging and such. I am a full time working mommy. Natalie has grown so much since my last post. Speaking of which, the little monkey needs juice...... Ha ha that was fun while it lasted!

Good bye blog for now!

Episodic Ataxia Type 2 test results

So we finally got the results back from Natalie's blood test. Its only been since September :) The test came up negative for the mutation. BUT her Dr did some research and he found out that 50% of people with this mutation have the same result. It doesn't show up in the test. He still feels like this is what she has. So I guess she has this super rare disorder that less then 150,000 people in the United states have. Then you cut that in half and she is in that percent of people who it doesn't show up in their genetic tests. Pretty rare indeed.

When her Dr first called and said the test came up negative, I was really discouraged. I felt like 'Here we are again with all these symptoms and no answers' But I really feel confident in the doctors decision to keep this diagnosis. I dont want Natalie to have ANYTHING but if she is going to have something wrong with her I want to have a name for it. Something I can hold on to. It makes it more tangible in my mind, that I can put a label on it. I guess I'm just so tired of being frustrated from all these years of Ben having this problem and nobody knowing whats wrong with him. I don't want Natalie to have to suffer the way he has.

So we can only go up from here :)
In other news, Natalie has an ear infection. Poor kid cant catch a break. She never cried or acted like she was sick. She just started getting these really high fevers in her sleep. I wasnt even going to take her to the Dr, But I did anyway just to be on the safe side. She has been acting so happy and healthy. My mom said I did the same thing when I was little. One day I woke up and had ooze coming out of my ear. My eardrum had burst and she never knew anything was wrong with me because I never cried. Natalie and I are tough cookies :)

Natalie is really on a up swing with her speech. She actually said her own name today for the first time ever!! She said 'Natty coat' referring to her coat. She has been talking up a storm lately. Its like a little light bulb went off in her head and she has finally gotten over a hump of not being able to learn new things.

She watches Go Diego Go all the time and we have this one DVD running in her room. She watches it whenever Ben and I are studying or in the shower. She has almost gotten all the words memorized! She copies what they say on the TV! She doesn't understand everything that she is saying but she is mimicking which is HUGE!

Since she has started daycare she has really opened up! I'm so proud of her. Everybody tells me how beautiful she is and how sweet natured she is. We get compliments everywhere on her behavior and demeanor. She really is an angel. I am really thankful Heavenly Father sent her to us. I don't know what I have done in this life to deserve such a wonderful daughter, but I am truly blessed.

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!