Well things have been interesting around here..

And that is putting it lightly!  On March 6, my little Ava was flown on Medevac out to Children's Hospital of Pittsburgh. It all started over the weekend when she was running a high temp and a runny nose. Tylenol and Motrin were not having much effect on it, so Monday morning I took her in to the doctors. They checked her over and sent us home with some antibiotics.  On Tuesday she was not doing well at all, she was so pale and not moving right, so I took her back to the doctors.  Her face had started to swell at this point, and it was decided I should take her to the ER.  

Once there, we talked to the ER doctor who almost immediately called for blood work, xrays and a helicopter.  Yes a helicopter, that took us a bit by surprise, but at this point her face and neck were really getting big and he found a hard lump on her neck. We were really starting to panic at this point, just praying that we find out the problem and that she was going to be ok.

Here she is right before we flew out.

 After getting all her tests back, with nothing really found, and she was good and stable we were loaded on the helicopter. She did really good and even tried to sleep on the way out.  Once in Pittsburgh, after waiting an hour in the ER, she was admitted to the hospital. 

 She is so miserable at this point, she is barely moving. I haven't seen a smile in days. We are just worried sick wondering whats going on.

 After a few days on massive doses of antibiotics and pain meds, she starts to feel better. We don't really know what happened, but a deep tissue lymph node in her neck got infected. She wouldn't stand for the CT scan, and the ultrasounds didn't show anything, because it was too deep to see, so we just kept with the medicines. Putting her under to do testing was just too big of a risk, but it would have been done if she had gotten any worse.  

Thankfully the meds started working, and by Thursday she took her first bite of food in five days. Homemade turkey and veggies that daddy brought for her to eat! She scarfed that down and we were all happy.

                                       

 By Friday afternoon, she was well enough to go home. 

On Saturday she was feeling so much better, she decided to get into the pantry and dump out a box of cereal =)  We all laughed, it was great to have her feeling like her old self again.

Ava continued the antibiotics at home for another week. She then developed an ear infection, which needed medication too. I think she is finally on the road to recovery.  This winter has been really rough on her and the rest of us too.  

We are just so grateful for all the love, prayers and support we received  while going through this with her. It was very scary and overwhelming, but with the love of our family and friends we got through it.

Thank You and We Love You <3

The Toy Library

We have been working with a SFU student these past few weeks to help her with some school credit. It has been fun and Ava is really enjoying working with her. SFU has a lending toy library where we have been working, it's in a beautiful new building on campus. Ava loves playing in the library and taking long walks up and down the stairs.

Here she is riding a bike!

I just love participating in projects like this. it exposes her to new and wonderful things

 while educating on her syndrome =)

AMAZING

I can't believe it, another year has gone by and my Ava is another year older. 

Six years old and so full of love and laughter, she loves life like no other person that I know. 

AMAZING, 

that's my word to describe her, 

because she is in everything she does. 

Happy 6th Birthday my beautiful, amazing daughter!

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I cannot wait to see what wonderful magic you do this year!

Just wanted to share

I Know Different
 It was written by Tricia Proefrock 

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.




Very Beautifully written!

Happy New Year!!

To all of our great family, friends, teachers, and therapists that have given your love and support over the years, we love you and appreciate you, and may you all have a fabulous 2012!!

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Ava had a great Christmas, even being sick for a few days. She really loved the wrapping paper this year.

Christmas Morning! 

                                       

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Ava is playing with her brother's car and track set. She enjoyed ripping it apart =P

Probably the next time I will have a post Ava will be SIX! Where has the time gone? I'll post an update after her party =)

I guess...

that I am just too positive,  too nice and too naive.  I have always tried to maintain the positive outlooks of raising a child with special needs, especially one with an extremely rare condition. A syndrome of which, for the most part is unknown, and a future that is based on a daily basis. Because of that, my conversations with people mainly lean to the good and to the accomplishments that make me such a proud mother of a little girl that is forging her way through life the best she can. Her blog has chronicled her life these past five years, and I have tried to make sure that there was something good in almost every post.

I guess that makes me stupid not posting about all the negatives, to expect some people to see exactly how hard it is to have a child with disabilities like Ava. They see me as getting special treatment, that I get everything handed to me. THEY are dead wrong. I have quit my job of almost ten years, I have put my life on slow motion, I have BUSTED my behind making sure that Ava gets every single bit of therapy, insurance, program, doctor, etc that she needs and deserves, to have a go at a life that is some what normal.  For example, people don't know that at almost six years old and 60 pounds she still has the mind of one year old. Physically it is so much more demanding on my body to help her do just everyday things, but then if she has a fit it is 1000 times worse. It is even difficult for my husband to handle her, when she has her mind made up, because the older she gets, the more super human strong she gets also. Unless you walk in my shoes you will never fully comprehend what I go through, what I have done to ensure that she has a place in this world. I would never, ever change Ava, for that she is my heart and soul just the way she is, but let me ask you this, would you trade one of your perfectly healthy children for one that had disabilities like Ava?  Would you be willing to change places with me so that I could have a conversation with my daughter and ask her what she would like to do today? Or what her favorite color is? Or how about that I could hear her say Mama and tell me I love you. How about so I could leave her alone for 5 seconds and not worry about what she might be into?
The questions are infinite.

I am the mother of a special needs child and I am proud of it, for it has made me grow into the person that I am.  I try to see life as it is through Ava's eyes, as just the smallest thing brings a smile to her face, or brings forth a cute little giggle.  She will never know the insane craziness of a "normal" life, and all the turbulent emotions that come with it. Her life will be fulfilling and happy because of the people she has surrounding  her will do everything in their power to make it so. I will make sure of that.

Be thankful for what you have and have some compassion  and understanding for others that may have a different situation.  Do not assume you know what their life is like, because it is probably not even close. Don't be so blind that you only see your own blessings and not the blessings of those that surround you, you will miss out on some beautiful sights!


               

Recent Pictures

Here she is snuggling with her dog Emmy.

She was a little fairy princess for Halloween this year.

 Playing in the first snow of the season.

One of her fall pictures