Tuesday, May 31, 2011

Ritual

Often times, I used to lay my head on Kama, and listen to her heart beating. I would say a little prayer, asking God to please, never let it stop. Please, never take her away from me. Please, I needed her more.

As I lay with her, that awful day in October, I remember them saying to us, "she's gone...." As I soaked her beautiful yellow fur with my tears, all I could think of, was my ritual.

Divided

Every thought I think.

Every sight I see.

Every story I tell.

Every feeling I feel.

Every thing I touch.

Every memory I remember.

My entire existence is unintentionally divided in two,

before the accident,

and after.

Monday, May 30, 2011

We Remember

I would like to join in today, and honor all those who have graciously given, and died for our country.  These men, and women were the truest heros of them all. I found something, and wanted to post it here, because it sums up everything I want to say....

"To those who died securing peace and freedom, to those who served in conflict to protect our land, and sacrificed their dreams of the day, to preserve the hope of our nation, and keeping America the land of the free, we owe our thanks and our honor. It is important to not only recognize their service, but to respect their devotion to duty, and to ensure that the purpose for which they fought will never be forgotten." 













In my very own experience, what makes up a true American Hero is firmly engrained into their DNA. They, not only, carry it with them in training, and in combat, but in their everyday lives.

As many of you may remember, two soldiers ran to the assistance of my family in their greatest time of need. It was Sgt. Merenda who immediately jumped into action in resuscitating Aviana, just minutes after the accident.

Our soldiers are true American Heros, who sacrifice more than we could ever imagine. I am grateful, but most of all, I am humbled by each and every one of them.

We will never stop loving you, Sgt. Merenda.

You will forever be, Our Greatest American Hero!!





Sunday, May 29, 2011

Avi Bear


I still have so many pictures to share, so I just decided to attach a bunch today ;o)




When we redecorated Aviana's bedroom, she also got a new bean bag. We always try to move her all over the house. With this, we can easily move her, and put her close by, wherever we are.



















Evil eyes...




I'm sorry, when did this happen? When did our 'short stack' turn into Avi long legs??













This was on Mother's Day.
















Saturday, May 28, 2011

Unexpected Rant

My Mom, and Gary really wanted Aviana to go back to physical therapy. We thought about it for a few months, and then decided, at this point, it couldn't hurt.  They take her to every appointment, and I thank them, so very much!!  I took her this past Friday though, and wanted to share some pictures with you! 

Aviana really likes Erin, her physical therapist. So, I called her to see if we could come back. She said we could, but on a trial basis. The trial is between 4-6 weeks, with her going...are you ready for this....one to two times a week for 30-45 minute sessions. 

It is really hard for kids like Aviana to meet the goals set by Kaiser, so I wouldn't be surprised if she is released at the end of the trial.

All of the above, is why I am so thankful for The Institute Program. I feel we have the power to make sure our child is getting the BEST chance of recovery. With The Institutes, my hands are untied, and I don't have to fight tooth, and nail for every tiny, little ounce of therapy.

Like I said, Aviana will probably not meet the goals set by Kaiser, and I mean Kaiser, not Erin. So, while  they are not really interested in helping our child get better, I have comfort in knowing, WE DON'T NEED THEM!!!!!!!!

The more I know Kaiser, the more I fly back to Philadelphia.

Seriously, this came out of left field. I meant to come on here, tell you about Aviana's day at physical therapy, and share some pictures. Apparently, my subconscious brain had other plans. This is what has come out, as a result of all of the many problems I have had with some of the people at Kaiser lately.

Some of the doctors surprise me by their complete lack of care for my child. These few doctors are the ones who should care most, but sadly, don't!! I, so badly, want to burn my bridges with a few.  I have the e-mail all planned out in my head. It goes something like this....

Dear Doc~

Picture your beautiful little child. 

Now, imagine your sweet child was taken out by a car, and left immobile, and in constant need of care. 

Now, think about the level of care you have provided, and ask yourself, would you be happy with the service you have provided my child?????

I have found a new doctor.

Thanks for nothing,

Jen

I have already fired one of Aviana's doctors, as she is a complete and total waste of my time, efforts, and energy. This bitch doesn't help Aviana in any way, shape, or form. Beyond that, she doesn't have one shred of compassion, and should seriously question why it is she stays in her profession. 

The last straw for me, was when she spoke rudely to my mom at an appointment. It is one thing if you are rude to me, but if you are rude to my mom, who is just trying to help me out....then you are DONE!!

Just think, it takes a lot to offend me, or to push me to this level. I give people the benefit of the doubt, and many chances, before I ever get to this point.

Anyway, not all people at Kaiser are worthless. Aviana's physical therapist, and specialist, Dr. Durant, are heaven sent. I thank them both so very much for actually caring for our child. Beyond that, I thank them both for helping us too, and knowing we are just trying to do everything humanly possible to give our baby girl a chance!  They both treat us with compassion, respect, empathy, and above all, they do what they say they are going to do, and are very proactive in everything!

They help us with whatever it is we need help with, and are also there to cheer us on. They actually genuinely celebrate our victories with us, and that is the best feeling! 

Okay seriously, back to our regularly scheduled program....















Aviana initiates 80% of all of her steps, and walks for about 17 minutes a session ;o)

Thursday, May 26, 2011

I Saw Her Standing There









Aviana has the strongest little legs, and is such a hard worker! We can tell she truly enjoys being upright.

































I wanted to show you Aviana's Saturday morning bed head.  Rainey, on the other hand, rolls out of bed looking perfectly shiny, and stunning!




All this standing, makes for a sleepy little mee-key!


Lucky Me


















Wednesday, May 25, 2011

Dear Oprah -

Baa Hoo

I miss you!

Prayer

My best friend's son is almost 3 years old. He was saying his prayers last night, and this is what he said...

"Dear God, thank you for Mom, thank you for Dad, thank you for David (his brother), thank you for Jen Hodder, thank you for hair, and thank you for ears. Amen."

Her sweet boy, melts my heart.

Something's Gotta Give

I have talked about this subject over, and over, and until I am blue in the face. And, I truly have come a long way, but there is still a much longer way to go.

Sadly, often times, when I look at Aviana, all I see is work. Work, work, and more work. Unfortunatley, I know she looks at me in the very same way...."Here she comes, the freak with that damn plastic bag...." Sure, we get in our time together, but sometimes I wonder how much of the day is true, quality time.  I am scared to add it up.

My days, and nights are spent mulling over the program, devising a new master plan on how to beat this brain-injury beast, talking to Dave, putting a new, and improved plan in place, explaining it to Lesya, and all others involved, ordering more lab tests, working on yet, another report that's due. Then, just when we think we've got it.... we find ourselves going back to the drawing board of finding more non-therapy time, calling the various entities of, "The Village" to make sure everything is straight, and in place, and that none of the various objects juggled overhead are about to come crashing down.

We all know what hands on time is like. Now, I run the risk of sounding ungrateful here, but I am just being honest! The most frustrating part of my day is feeding Aviana. I try to be very calm, but at various times, you should see the thoughts bouncing around my head. They aren't pretty!  My patience level has come a long way, but when I am feeding her, it is the first to go. Shouldn't I be happy she is eating through her mouth? Yes, I am, but the frustration is alive, and well!!

My logical mind knows it's not her fault, and she is doing an amazing job, but it's just so much. To feed her three meals, two snacks, and her water, all day long is exhausting in itself, but then to add all of the therapy, etc. is insane!  It is so incredibly frustrating when she won't open her mouth for the bite, and the worst is when she blows her food all over your face, the couch, and everything else in its path, including Rainey. Everything gets caught in the cross fire. Nothing is off limits. All of this is not even a mention of what it is like to feed a 32 pound child with little head control.

When I am in this space, I think of the scene in Say Anything, if you are familiar, you will know what I am talking about. Often times, I reflect back on that in order to calm myself down.

"Maybe their mouths don't work as good as yours...." 

When I feed her, I am constantly thinking of all of the time I am losing on the rest of the program. It's a downward spiral from there, because my mind always goes to the happier breakfast, and lunchtime place of making something fairly quick, sliding it across the table, and going on my merry way to do other things, while she eats. Ahhhhh, the feeding frustration is endless!!!!

Even when I am not, hands on, my mind is rifling through at almost all times. Even when I am away, I am still here. Like I said, I have a long way to go, and I know it. The problem is getting there. I am finally on my way though, and that's a great start, frustrating, but great. It only took a a year, two months, and a few meltdowns to finally start down the right path.

The place I want to be is simple, and it looks like this:

I want to be able to look at Aviana, without seeing boat loads of work.

Geez, balancing is so much easier on a level playing field, or when you are ahead of the game. When you are miles behind, in every way, it can be ridiculous!

I have to admit, the closer we get to leaving to PA, the lazier I am getting!!!!

I hear her, gotta go feed the sweetie! I will forever be thankful that she sleeps in ;o)

Sad, but True





Tuesday, May 24, 2011

Decisions



The new remote! That was so much fun the last time!




Ahhh, I didn't know you were standing there watching me.




Seriously, can you just go away so I can have some fun!




I got it, I'll just pretend I'm asleep until she walks away.




Just in case you forgot, this is what happened last time.


Partners In Crime














Yeah, I am aware I posted too many pictures of the same thing. I just loved each one for slightly different reasons ;o)


Inspiration

One of the best parts about going back to The Institutes is seeing all of the families. When you begin the first course, the friends you meet, follow along with you every six months.

The following family is one of our very favorites. They have given up more for their children, than anyone I know. When I say they put us to shame, they really do.

I admire them on so many levels, and am inspired by them more, and more everyday.

Enjoy!

Love Train

Often times, I turn the corner, only to see one of the most beautiful sights ever. It's the love train, and Rainey is the caboose. 

Since the first day, I knew Lesya was the one for us. But, it is what she said yesterday that made me melt!  They were in their typical feeding train formation, and Lesya said, "I love when Rainey does this. I love to feel her breathing on me!" Love, love, love that girl. We were meant to find each other, and I am more thankful for her, than I could ever venture to explain. Thank you Lesya!!!













Monday, May 23, 2011

More About You Mondays

What I know for sure....

I have to be careful with this question.

Dog spelled backwards, is God.

No, is the answer to all the questions you do not ask.

I love my family, and friends.

For the remainder of my days, I will go to the ends of the earth to help Aviana.

I miss Kama, and Aviana dearly, and daily.

I love a Rainey night.

When you assume, you make an ASS out of U and ME.

●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    ●    

- Todays question -

What are a few of your favorite things?


It Stops Today

Last Friday, my friend Jen and I had a long talk about, well everything! That's what we do. But this last time, we were doing one of my very favorite things, and that is talking about music, and especially lyrics. I am a serious lyric freak. I will literally back a song up 14 times, if need be, for a variety of lyrical reasons. Again, don't I sound like a day at the park?

Anyway, we were reflecting back on one song in particular, and I love it so much, I wanted to share it with you.

With videos, correct lyrics always win with me, so don't mind some of the cheesy pictures within ;o)



Sunday, May 22, 2011

Uh Oh

It's on, now!

♡ ♡ ♡

♥ ♥ ♥ ♥ ♥

Hearts for everyone! 

Here's a heart for you! 

And a heart for you!

And, one for you!

Thank you Troy, the real life Mac Daddy!

Friday, May 20, 2011

I'm Broken...


You guys have helped me, and now I can make hearts on Facebook, but I still can't do it on here??

Can you make hearts on Blogger?

Or, is it Mac Daddy, aka our Mac computer?


Simply Leave a Comment

A more than generous family had a child who was very sick last year, and now is turning 4 years old on Saturday. For every birthday wish they receive for their son, Kevin, they will donate $3 toward a life-saving surgery for a little orphan in China named Roy.  

Let's help generate funds to help this sweet little boy! It will take less than one minute!! 



Thank you!




Kevin




Sweet Baby Roy

Here is a little bit about him

"Roy was born December 20, 2010 and abandoned one week later. When the police were unable to find his parents they brought him to the local orphanage. Roy was born with heart disease (ASD) and a deformed left ear. When he arrived at New Day Foster Home, on April 12, 2011, he was very tiny and weak. Though Roy does not have a lot of strength, he is alert and follows people’s motions with his eyes. He is gentle and has a good temperament. Roy has a strong grasp and holds tightly to adult’s fingers. He sleeps and eats well. We are blessed to care for this sweet little boy and look forward to watching him grow strong and happy."

Roy has been battling pneumonia this past month and has been in the PICU. We know how dangerous this illness is for a child with a heart condition. Please pray for his healing. Roy desperately needs this surgery to thrive. And one day, Lord-willing, he will be able to meet his forever family and live an abundant, full life! Think how HUGE that is! And YOU can help make it happen, just by leaving a birthday comment for our Kevin! I know I don't have a plethora of followers, and I sure do love each and every one of you! Please tell your friends, your family, your mailman! Let's celebrate LIFE!

(This birthday party ends Saturday night, May 21st at midnight central time)


The Reason Why