Sunday, June 19, 2011

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!


Friday, June 17, 2011

New cast!

Emily did so well after her last hip surgery!
She did not even cry when she woke up from anesthesia. She was happy and smiling from that moment on.

I swear you would never know she was under for over an hour.

We checked in the hospital at 10:30 and were on our way home at 2:30.
The dr said her hip "looked and felt like a normal functioning hip" YAY!!


Pre-op-Happy girl!


The surgeon said her skin looked great and had no redness or breakdown. Score one for mom! :)
The cast was also very clean, thanks to the tip from another mom about lining her cast in duct tape.

We chose a bright green cast and I bought some zebra print duct tape!
It is very summer-y. It reminds Joe of 80's.



 I had to wrap tape around the bar because it was really rough and when we burp her we set her on our knees, the bar rest on our knees.

She has 5 weeks in this cast and then 3 months in a Rhino Cruiser brace just at night.



Also, for Emily's birthday she received several Amazon gift cards. I ordered a few things and wanted to share those with the sweet gift card givers :)

I got this swing. Our neighbours gave us the frame, it is a very small frame and perfect for Emily. The swing holds up to 100lbs so she will be able to use it for a long time!


I also got this lady bug constellation nightlight. I don't have a picture of the actual lady bug but I took a picture of the stars on the ceiling. It has 3 different colors and turns off automatically.
I have been trying to find something that will keep Emily happy at night when she is falling asleep. I, normally, have to let her fall asleep then place her in bed or lay next to her until she falls asleep. Soooo, tonight I tried it out and SUCCESS!!! I laid her in bed AWAKE and turned on the ladybug (purple light of course) and left the room. I checked back a little while later and she is sound asleep.




I also got this  molar teether. So far she does not care for it but i will keep trying. She needs those darn molar to break through! 
I am sure she will be glad once they all break through too!


Wednesday, June 15, 2011

2nd hip surgery

2 blog post in one day! *Gasp*

Just wanted to update on Emily's next hip procedure.

We go back to the hospital in the morning. She did not get the 1st surgery of the morning like last time so I hope she does not get too hungry.

Under general anesthesia they will remove her cast and recheck her hips by injecting dye and using another arthrogram.

IF her hips show improvement since she was casted 6 weeks ago he will recast her in a new cast for 4-6 more weeks.


My sun bathing beauty!
 I am praying the first 6 weeks of casting has shown improvement!

Now to decide on another cast color. Maybe red, white, and blue!

Please keep Emily in your prayers tomorrow. This is not a major surgery but anesthesia can be hard on any child with epilepsy.

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!!

Thursday, June 9, 2011

adapting and playing

Since Emily is in her spica cast she cannot have a bath. We use an inflatable bath basin to wash her hair. It is not easy and she does not care for it either. I have a couple bowls of water and it gets very messy!


So I found this drip feeding bag and I found an old IV pole from when she had her feeding pump. Then viola!
I fill the bag with warmer than normal bath water, because it cools down fast and I can control the drip rate and wash her hair much quicker.



She got this stacking toy for her birthday and she loves it! She played with it tonight before her bath. :)


Emily's bed it attached to mine with the front rail off. I put on the little mermaid for her and tucked her into bed and within minutes she was out! We might have to watch the little mermaid more often!!






Birthday Party #1

We had a wonderful time celebrating Emily's 2nd birthday!

It was just us 3!



Helping daddy blow out her candle.






I don't know about this, mom!



It's not so bad!


She made this mess all by herself! We could not have been more proud!



She also did this all on her own!!



We are having her big party this Sunday at church. Everyone is welcome to come! If you need directions let me know!

Sunday, June 5, 2011

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!



Friday, June 3, 2011

cousin and cast adjustments

Things are going pretty good with Emily. No seizures or spasms in quite a few days. I think the problem was teething pain. Once we realized how much pain she was in we switched some meds and tada!


We had a great Memorial Day weekend.
Sunday Joe's mom and step-dad came over for a little cook out.

Then on Monday Emily met her cousin, Zoiee, for the 1st time. Zoiee is such a sweet and smart little girl. She just loved Emily and Emily loved the attention!



We really enjoyed our time with Joe's step brother, Jeff, his wife, Megan and Zoiee. Wish I would have gotten more pictures though.

Emily's cast has been irritating her g-tube lately. She has lost a little weight and settled down into her cast and the cast is not pushing up on her g-tube when we set her up to feed her.
We took her to ortho and the cut it down a little bit. I was afraid she would hate the cast saw but it actually made her laugh!


Before cutting it down. This is with her laying down, so imagine setting up!


This is after. SO much better. She was so happy to get to eat again!


Less than 2 weeks away from her next surgery. I can not believe how quickly time has flown by!
They will remove the cast under general anesthesia, recheck her hips with a dye injection, and if it shows improvement they will recast her for 4-6 more weeks. I am praying that the recast her because I really want this to work!


I love this laugh!

We have also a new nurse. I won't go into details but our last nurse that we had for over a year is no longer with us. Our new nurse is fantastic! From our past experience we chose to only have her 2 days per weeks, that is enough for us for now. I am so thankful to have found a great nurse with Emily now that we can trust!