sucess!

Well friends, I did it! I successfully went out of town, stayed the night, enjoyed myself, and came home to what I left.

~~~sigh~~~

I was so very nervous, more than I am afraid to admit.

I have never left Emily overnight. Tried once last year, it ended in failure and a trip to the er.

I can not tell how much this trip to Women of Faith helped my soul.

I missed Emily but I did not worry (Much ;))

She was well, happy and I had lots of pictures texted to me.

She did great and slept ok(ish) and ate most of her food.

All the things I worry about.

To be able to have a girls weekend, enjoy fellowship with 33 members from our church and 10,000 women in one arena was amazing!

Our group!

Michelle, Angie, and myself.

Jordan, refused to conform and wear pink.

My best-friend. Angie, it's a good picture!

At one point they had us all hold hands. In the row in front of us were a mother and daughter, Sha and Vicki. I just love this picture!

Worshipping.

I was so excited to hear Angie Smith speak. She has a blog and has written a book about loosing her daughter. She just started on the women of faith tour this year.

She is a fantastic speaker and so real! She had us laughing and then the next second crying.

I had already read her first book about the lose of her daughter and I bought her 2nd book while we were there.

It is about fear.

How appropriate, huh?

As a mother to a little girl with lots going on, I fear a lot.

What happens to her when I am gone?

What if we loose her 2nd insurance?

What if Joe lost his job?

What if we lost Joe, how will I provide for her?

What if I get hurt and can't take care of her?

What if I have to put her in a home one day?

What is she is a statistic and does not make it though childhood?

How would I live without her?

This list really is overwhelming but sadly I think about these things often.

Telling myself to trust in the Lord, He will provide, does not comfort me as people say it should.

Praying does not take those fears away either and telling me they are irrational will just make me angry at you.

They are mine and they are all real!

I have to learn a healthy way to control them.

So I was pretty pumped when I got to meet Angie Smith!

AHHH, I know right. I wanted to scream too but I totally had to play it cool.

I wanted to say many things but I am afraid it all came out in one word.

Ohmygoshyouaresuchablessingthankyousomuchforbeingsohonestandopen...breath.

She just smiles and asked a few questions about Emily.

I know she is just a person but i got to meet her!!

ok I am over it now ;)

I came home to a happy girl ready to eat her spaghetti!

Bathtime followed!

We even had a shirt made for Emily.

Sunday, Joe let me sleep for a few hours in the other room. Emily was up for a while and he knew how tired I was.

I went to get them up for church and this is what I found.

Yes, I crawled in bed and snuggled!

I love them!



Good Stuff

This is a big deal people!

Emily drank about 10cc from a sippy cup today!!!

We found a cup she will drink from!

You can go here if you want to check out the cup.



So proud of her!

Happy 4th of July!

Hope everyone had a great 4th of July!

We had a great lazy day!

We have an amazing nurse now, Kathy, and she wanted to work today. Joe and I went out for dinner and spent some much needed quality time together.

Did I say how great Kathy is, because she is that great!

Our neighbour sets off fireworks every year, usually on the 3rd, but it rained so Emily did not get to see those. Spica cast and rain don't mix.

We did have a cookout with some friends and family but I did not get one picture.

I thought Emily may like some of the fireworks so we bought just a couple little ones for her. She liked the sparklers, one of the fountains were very loud and she only liked the first part of those. The squealing sound of those made her giggle.

My camera died after these two pictures of her watching sparklers.

So I had to break out the camera on my phone.

She was still watching the sparklers :)

Not liking that sound too much!

Emily is doing really well. We see "things" that could be spasms every week or so. Nothing major and they never last long. She is cutting 3 molars and they have all turned into teething hematomas and are pretty painful!

She gets her cast off on July 22!!! We all can't wait!!



Happy Father's Day

Father's Day is very bitter sweet for me.

I love it because I get to celebrate the wonderful father that Joe is. Emily is lucky to have such a devoted and loving daddy.

It is hard because my biological father has not really even been in my life. I think I was 11 or 12 the last time I saw him (which was in the court house).

My step-dad, Mark, came into our lives when I was just 7. He really is the only father I have ever known.

Sadly, I lost him 3 years ago next month.

I often wonder how things would be now if Mark was still alive.

If you really knew Mark you know he could be loud, rough, and he cussed constantly! BUT, he was always there for us! Every time me and my sister moved he helped, every time our car broke down he would help us fix it.

He was literally cleaning his shot gun when my first date picked me up!

He was protective of us!

He NEVER turned his back on us.

More than anything he loved us!

I wish he could have met Emily.

He will one day though.

So, today I will focus on the wonderful father Joe is.

I think a lot of times special needs father's don't get enough credit. They are expected to be strong all the time. Most of the work outside of the house.

They miss out on a lot of things because they are working 50-60 hour work weeks to make ends meet. If you did not know raising a child is very expensive when you add tons of medicine, therapy visits, multiple specialists, equipment and specialty toys if can get VERY expensive.

Joe works hard for us.

On the weekends Emily knows that is her daddy time.

Her face lights up when he talks, I am pretty sure she thinks he hung the moon.

Thank you, Joe, for doing all that you do for me and Emily.

Thank you for loving us just where we are.

We love you so much!!

Happy Father's Day!



2nd birthday party (Lots of pics!)

Emily's 2nd birthday party went great! I was nervous because she was sleeping at the beginning and she slept through her entire 1st birthday party. She woke up just in time and had a great time! She was happy and smiling the whole time!



Sleeping beauty before the party began



I made over 75 cupcakes for her party. I was trying to save money this year and it was a success! I even made my own icing! My best friend, Angie, came over and helped me decorate all of them! It was a lot of fun to do!

I love this picture of Sha, the children's minister at my church, praying because if you look all the way to the left of the picture just under the cross you will see Micheal praying. I just love the innocence of a child praying and Micheal has prayed for Emily many times before :) such a sweet boy.

This is Emily's cousin, Sam, "kissing" (more like rooting) Emily's forehead. Emily was still snoozing and we leaned him over and it just look precious!

Emily with her grandma and grandpa Johnson.

 Family pic minus Cayla, again. Dang, we gotta get this girl in some pics soon! Come back from Florida Cayla! We miss you aunt sissy!!

Singing "Happy Birthday". Looks like she is singing too! 

Yummy!

happy girl!

Love my family!

My sister, Amy, and our babes. Love this pic of Emily! She looks very mischievous!

The woman behind all the beautiful photos!

This is Rebecca, she is an amazing photographer. She also took our last family pictures. You can click on her name and check out her blog, which is fantastic too! You can also go here to see Rebecca's photography facebook page.



Thank you so much Rebecca! I love having such great pictures to look back on.

Also, thanks to everyone who helped with the party and came and celebrated with us! We are so thankful for each one of you!!

Happy 2nd Birthday Emily

Emily Jean was born at 7:47pm. The single most happy moment for Joe and myself.

She could not have been more wanted and loved.

I loved everything about being pregnant! I will never forget the first time I felt her kick. It made everything so real.

It was not the easiest pregnancy but I would do it a million times over for her.

Our lives are not what we expected it would be and some days are really difficult. We ask "why us" or "why her" but then we look back on this past year and see that we really have so much to be thankful for.

We have ALL come so far this past year. Emily loves so many things! I love seeing her light up because something or someone has made her happy. A year ago there was not much she really liked. Now she loves Mickey Mouse Clubhouse, anything with lights and music, kisses on the cheek, for you to shake her arms back and forth, dancing, her puppy violet, still loves her paci, when we talk in a squeaky voice to her. I could go on and on.

She is really enjoying life and I think that has helped Joe and I tremendously.

I can't wait to see what the future holds for her.

I am lucky to get to be her mom.

I am so thankful that God chose me to love her.

Emily can not say that she loves me but when she reaches her little hand out to touch my arm, I know.

Emily, I can't imagine loving you more now than I did a year ago but I do. You have taught your daddy and I so much. We are better people because of you. You have brought more joy to our lives than we could ever express. Not a day goes by that I don't stare at you and say out loud how thankful I am to be your mommy. There is nothing else in the world that I would want to be. You are so strong and I am so proud of you.

Happy 2nd Birthday!!

I love you

Last pregnant picture



Getting ready!





1st time seeing her!




Daddy showing her off




So pretty




Going home!





Take a guess!

Guess what Emily did today!!

You guessed yet.....

Well, she drank TWO ounces of pediasure from a sippy cup!!!!!!!

It was not perfect and it was over an hour or so but she did not choke or push the sippy cup away.

She drank 1 ounce yesterday but today I think she realized a little bit more what she was doing.

SO proud of my girl!

another first

I had this grand vision of the first time Emily got to swing on the swings. It know to most it sounds like a silly vision. To me it was a big deal because Emily is very limited physically. She is about a 3-6 month age range developmentally.

She got a huggabebe for Christmas and it is just perfect for her in one of the bucket swings.

Joe and I had this planned and Emily was in a great mood!

We found a local park and to my excitement no one was at the swings. Emily tends to shut down it there is too much noise and by shut down I mean fall asleep.

We get everything ready, put her in her huggabebe, stick her in the swing, and then instantly this......

She HATED it!!! Every single second.

We will try again sometime in the fall. She will be in a cast for 3 month next week so maybe after some time she will enjoy it :), we'll see.

My girl would just rather I hold her and snuggle at the park then swing. That is ok. She is only little for a while.

We are just so proud of her. She is doing new stuff everyday! Just yesterday she held her arms up when I unbuckled her car seat (she knew she wanted me to pick her up!!)

She is holding her trunk better and better everyday.

When we hold her she does not just lay her head down on our shoulders, she holds her own head up when she is not tired.

I could go on and on about the inch stones she is making.

Emily may not have many milestones, some days they will be inchstones, centimeterstones, or even millimeterstones but heck they are something!!

I just love her so and I am so thankful I get to watch her grow up, no matter how far she may get.

Still abnormal BUT........

Emily had her 1st post ACTH eeg. It was sleep deprived so that we could catch her falling asleep and then waking up.



Slap happy from keeping her up until midnight!



Love this smile!

She did great! She was not a happy camper when I woke her up at 4am (neither was I).

They hooked her up to the eeg and we wait. I am horrible about staring at the eeg reading the whole time. I can't read them but I can sort of tell the really bad stuff (I did not see that).

Normally you wait a week to get results but her fabulous neuro just happened to be there and he looked at it for us and said....

It is still abnormal (slow background and some spikes) but no seizures and even bigger NO HYPSARRYTHMIA!!!!!!!

This is huge!!!

Emily, at her worst, had over 200 seizures and hundreds of spasms in one day. Completely uncontrolled.

While I still long for her to have a totally normal eeg one day, I will take this!!!

Thank you Jesus!!!!

I promised pics last time so here are a few to hold you over. :)



Emily and her new cousin Sammy.





I had to tell Emily that she could not eat her baby cousin!





You can tell how much shorter her left leg is. It is up and out of socket :(





She is saying "Thanks Kathy for my new chair!" ha she does really well in it. I need to get a newer picture, her head control has already improved so much!! Thanks so much Kathy!!!





Loving on grandma!

She has become very attentive when you talk to her and she smiles at everything!

Emily loves the sound of a clicking pen and loves going from dark to light.

I love that she loves things, no matter how small.

 

We have so much to be thankful for and thankful we are!

 

Our God is the same in the good and bad and we praise Him the same!!!!