Monday, July 25, 2011

freedom


Emily is still very stiff and tight in her legs. Especially her left leg. She had her first PT session this morning and to say it was rough was an understatement.
It's just going to take time and lots of stretching.

I have talked about Emily's waterwaybabies pool and neck ring before but I want to talk about it again.
It's that great!

We put Emily in it yesterday and today to help with her leg stiffness and she is loving it!



Emily in her polka dot bikini

As soon as she hits the water she starts moving. I don't think she stopped at all and she was in it for an hour each time!



I took a close up picture so that everyone can see it is not strangling her. It is like if you were in the pool and you rested your chin on a float. You are weightless so it is not pulling on her head at all.


Her is a side view of the pool. I love seeing my girl standing, even if she looks like Captain Morgan right now ;)


She puts her right foot on the floor and pushes.


The smile says it all!


I am so thankful Emily's great-aunt Shirley bought her this!

She feels so free. Emily is always being held by something, us, her nurse, a brace, a pillow, or some type of chair.
Water therapy is the only time she is free to move how she wants to move.

When it's not 175 degrees outside we are going to take her swimming in a big pool with it. Then she can really move! :)


Friday, July 22, 2011

Cast removal


The cast is off!

Our nurse, Kathy, recorded it so we could show daddy so I took the pics from the video. They are not the greatest but good enough.

She was so happy!


She loves the cast saw! I think it probably tickled.


Still all smiles!



Trying to help Abraham take the cast off!


Hold up! What are you doing?


I don't think she likes this part.


I picked her up and she just cried. It broke my heart but they said it is because her legs are so stiff and sore and they feel weird exposed to the air.


It is very awkward holding her right now too.

Her skin is great, just dry, and they commented on how clean her cast was. It did not even stink!

She did have several seizure once they got her out of the cast. They did a few xrays and had to pull her legs down and pain is a seizure trigger for her. Some valium and a cat nap and she was ok.

We are using warm wash clothes on her left leg to help with the pain. She is already stretching out her right leg on her own. Her left leg was turned and pulled back more the in the cast so it is more sore.

She got a real bath tonight and she really liked it. She moved both legs a little more and I got a lot of the dry skin off.

She has a brace to wear at night for 6 weeks.

She has no restrictions, just go by what she can tolerate.
We have less than a year in early intervention (home based therapy) so we have to kick some booty!

We are just praying the pain and tightness subsides quickly.


Thursday, July 21, 2011

Cast off tomorrow!!!!

We are so excited in the Rollins' house tonight!!!

The cast comes off tomorrow!!! Wahoooo.

Can you tell we are all so excited?

No more silly bar that is in the way of everything!


No more hard cast.


No more shoving diapers in to her cast either!


Since being in the cast Emily loves to pull her shirt up.
Seriously if she is not in a onsie she pulls her shirt up as far as she can get it!


Once she gets her shirt up she then likes to pull her g-tube!
This is a fun battle. All. Day. Long.



Hand clamped on her tube!


I can't get frustrated though because it is fine motor skills, right? :)


I can't wait to see her little legs and give her a real bath! I bought her some goats milk soap for her very dry legs. I used it and I am hooked now! (Just got to convert daddy ;))

I will try and blog with pics tomorrow.


Monday, July 18, 2011

Missing her


My grandma Jean has been gone for 4 years today.

I miss her as much today as I did 4 years ago, probably more.

I was rarely without her.

Growing up she was my partner in crime, my best friend, my secret keeper.
Heck, I even slept in her bed until I was 6 or 7!


my birthday. Grandma and my sister Amy.





Grandma and her 3rd husband Oscar.

She was stylish and refused to wear "old people clothes"!

She had an obsession with perfume and lotion. Hand lotion, self tanner lotion, foot lotion. It was a sickness :) haha!
She hated the thought that she would ever stink! 

She was hilarious and most definitely not politically correct!

My 16th birthday. Grandma and my brother Tyler.

She loved me so. She would tease and say with a wink that I was her favorite ;)

She loved Joe and was so proud of me for marrying such a wonderful man.

She wanted to see my children and was heartbroken with me as we struggled with infertility.


I was so thankful to have a long conversation with her right before she passed.

She told me she would always be with me and that she loved me more that she could explain.
I promised her that if I ever had a girl I would name her Emily Jean. Her favorite girls name was Emily.

I talk to her pictures often and think about how different life would be if she were still here.
So different.

She was our glue.

We all needed her to keep us together.

God, knows how I miss her.

Until then....




Thursday, July 14, 2011

She is showing off now!

Emily is on a roll with new things!!

Today we tried her thinkbaby sippy cup.
I guess today was her day because she drank 2 whole ounces!!!

That is so much for her!!

Normally she will only drink about 10cc (a couple tablespoons) from the sippy cup.


I guess now that her teething hematoma was popped she feels better :)

There is not stopping her now.

Tuesday, July 12, 2011

1st dentist appt

Emily has HUGE teething hematomas. She does not chew with her back teeth so the molars that are coming in have gotten very swollen and filled with blood and fluid.

 We do everything we can to break the molar free but nothing has worked. It is causing her a lot of pain and lots of sleepless nights.

They cleaned her teeth. Which she loved!

She seriously did not make one peep!


She even smiled at the dentist :) He said he was wearing the same toe nail polish as her Ha! To each their own I guess lol


He popped her top (biggest) hemotoma. It was not as much fluid as I thought. He looked like he was digging into her gums and I was prepared for screaming but she just layed there. No biggie!
I think it almost was a relief to have the pressure off her gums. He said it could fill back up but just keep working on it.
Emily has many many teethers and we now have a z-vibe, thanks to my friend Kathy! With all of these things we are hoping her little teeth will start coming out to enjoy some yummy food that needs chewing ;)


By the way, I loved this dentist's office. Tuesdays are reserved for special needs patients. It was nice to not have all the stares and really silly questions. Well, they did stare at her neon green cast, but who wouldn't :)
Just for some cuteness! I had a very rough night with Emily the night before. I asked Joe to take her so I could get some real sleep in the other room. I woke up to go get her meds and breakfast ready and this is what I find!
Sound asleep with daddy!
She is rotten!




Saturday, July 9, 2011

More great things!


Emily's OT left this toy for Emily to play with this week. We decided to try it out after dinner last night, so excuse the messy face. When you have a good thing going you do not stop to clean up ;).

video

She gets so proud of herself when she pushes the flowers.

By the way, I am not moving the flowers to her hands, she is doing it all by her self.

The next video is awesome because you can see she opens her hand all the way before pushing the flower.


video

This is another big deal! I am so stinking proud of my girl!



Thursday, July 7, 2011

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!

Monday, July 4, 2011

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!!