Monday, August 22, 2011

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!








Thursday, August 18, 2011

Women of Faith Round 2/dr appts

I am leaving in the morning for the Women of Faith conference in Indianapolis. I am so excited and very much looking forward to this weekend.
Most moms can agree with me that you are never really "off". Even in my sleep I am "on". I hear beeps from monitors or feeding pumps. I wake up if she is breathing different. I can hear her paci drop.

It's not a break from Emily that I am needing, I am actually dreading the fact that this will be the first night I have spent away from her.
I need a recharge so that I can be a better mom and a better wife.

Emily is in great hands. Our wonderful nurse, Kathy, will have her Friday until Joe gets off work and then daddy gets to spend the weekend with her. Good thing for her she likes to watch football!

Please pray that it goes well, we have safe travels, and that Emily stays healthy. If anyone remembers what happened last year click here to read.

Emily had a great neuro appt. He is pleased with her progress. I still can't believe the things she is doing!
I finally got some pictures of her and her neuro, Dr. Farber. Don't worry he gave me permission to post these. ;)

We had a time getting a smile out of her.

Finally, a grin!


It really is nice to have a doctor who listens to you and really cares about your child.
We are very thankful to have Dr. Farber in our lives. Wish it were a different reason though.

Emily also had a swallow study done. She is a picky eater. We tried to warn them but they have to add contrast in the liquid and food so that they can see the food going down under the x-ray. They gave her some pink liquid  and she gagged and chocked (new that was going to happen) it was overly sweet and she does not care for overly sweet anything! She aspirated on that which means the liquid went into her airway. They tried a baby food but she would not eat it-told you picky! I did bring one of her favorite jarred food, macaroni and beef. I know, yuck, but she LOVES it! She ate that great and did not aspirate on it.
We tried her regular pediasure and she aspirated on it too.
SO, no liquids at all by mouth for now. Any baby food is allowed and we will repeat the study in 3 months.
Sucks, but not the end of the world. We have work to do. Hopefully as her muscles strengthen so will her swallow.

Love this face!

Tuesday, August 9, 2011

Creative therapy

I bought a small child's stool at Target for $2.50.


Covered it with a thick blanket and tada, a cheap therapy tool!


It serves multiple use. Makes Emily hold her own head up, in turn will strengthen her neck and head control



It makes her bear weight through her arms and knees and engages those joints so that hopefully she will learn to use those joints appropriately one day.

She wants to keep her fists closed so I have to keep opening them and showing her that she can keep her hands open while do this.


Yay, open hands!


She really enjoyed this! When I took her off she fussed so I let her do it again for a little bit, such a go getter :)

Working hard and dr appt


Emily's left leg is still very tight and sore but we are stretching it more and more each day.
She is working really hard!

She is still getting lots of pool time in her water way babies pool. She knows when she wants to swim and if you don't get her in the pool asap she will let you know!

Emily finally had her 2 year check up. We had to wait until the cast was off for it.

She hates the paper on the table!


She cringes and wiggles and fusses.



So I put her back in her chair :)

She looks so big in this picture.


She is small. 20.11lbs and 30 in long. She will probably always be little.

They were pleased with the progress she has been making and commented on how alert she was.
3 hours later we had blood drawn, urine checked (they made her mad so she peed on the wall and the nurses ha!) a swallow study scheduled, a referral to a seating clinic at Riley Children's hospital to get fitting for a stander and a plan to help get some weight back on her.

She lost several pounds while in the cast and is not tolerating the over night feeds right now. 4am puke is never fun to clean up.


I am so thankful to have a pediatrician who really listens and a case manager who really does all the work ;). It is so important you and your child's doctor see eye to eye on their care.