Thursday, March 25, 2010

A New Day!

Hello to All! I feel like it’s been ages since I posted. Ava has been doing pretty good. We are praising God that she is staying well. It is hard to imagine last year at this time she was fed by a central line in her upper chest area. We endured a hospital stay to remove an infected line a few days before Easter but ended up going home Easter day, thanks to a wonderful doctor. A lot has gone right this year and we are just thrilled by her progress. Her speech teacher can’t believe she is the same little girl. Her vocabulary has grown from a few words to a few hundred. She is putting four words together at a time. We can easily understand her needs and wants. I marvel at her daily. She has been through so much and yet you would never know. Some days it is hard to hold back the tears of pure thankfulness I feel. Why am I SO extremely blessed? God is GOOD!

The things she hates….having her hair done and watching her sisters go off to school. She loves helping me around the house and yes she still loves Dora but has added Scooby Doo to the mix!

We are still feeding Ava two cans of Complete Pediatric through her g tube about 6 days a week. We generally take Saturdays as her day of rest. She is so used to the ritual that she gets her supplies out herself and waits on her bed until we come and get everything set up. It takes a good ten minutes to “Hook her up” and this is our time we love on her :) She never complains about the tube or the Pulsox monitor that gets put on her foot to help alert us if something goes wrong with her during the night. I’ve gotten used to the alarms going off 2-5 times a night if the tubing gets kinked, formula runs low or tubing gets wrapped around her neck. (Yes it has happened more times than I want to count.) If it helps her grow then we can manage. I’m just honored that God let her stay with us and that He has healed her the way that He has. I can’t look too far into the future BUT I know He will always be here and that is what makes me want to sing each and every day. So as of now we rejoice that life is quite BORING again. We adore boring!

Here is Ava and her new desk that I mentioned in the last post. We got this desk from They have some great things and reasonably priced.

She still loves to play “Peek-a-boo”!


I decided that after we dropped Lexis and Emeline off at Tae Kwan Do tonight that I was going to take some pictures of Ava. I can’t believe how tall she is getting. She is really something else and has quite the personality to match her life story. In one word she is “Amazing” to us.

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I did want you all to check out a new Facebook page I started called “Advocate for your Child”. I believe without a doubt that Ava was sent to us so that we could help others going through tough times. I know all too well what a true friend is and I’ve met MANY wonderful parents along the way that have given me great advice. If I can help I’m there. Please feel free to “become a fan”. I give many great tips on how to speak up for your child.

Thanks for dropping by and for all your thoughts, love and prayers. We know that if God is on our side we WILL go far!


Tuesday, March 2, 2010

Wonderful Opportunities.

Hello Ava fans. She has been a little fire-cracker lately. She wants to do everything “her” way. She is not afraid to climb, hop, bend over backwards, jump off furniture or do a high dive into the floor! Yep that is my daughter. She stares life straight in the eye and defies odds! :) We now know what kept her alive SO many times. She is so full of will power.

She has been mimicking me…..




Yes that is an Elliptical. She says, “Me Time!” Huh strange that’s what “I” say! I’ve been getting back into shape. I started in December. I’ve lost 18 pounds! It is sad how us Mom’s lose ourselves in the process of having children. I’m excited about looking better and eating healthier.

Here is a little video of her.

Each night Ava gets on the elliptical for a good 2 minutes, NO joke. She is getting quite good.

I did change Ava’s g tube on Wednesday night and WOW was that hard again. This time I decided to do it quick with one pull. Ava’s body creates a layer of skin around the button that must be broken in order to remove it. I imagine it is quite painful but it must be changed. She screamed but it came out and we got the newer size ATM Mini One button in and it is working great. I can’t say enough great things about this button!

During the day I’ve been working with her on Colors and Shapes. We’ve been looking for a desk that will be perfect for Ava. She needs something that will fit her and also something that provides storage for her supplies. We were offered the opportunity to do a review for the CSN Stores online. We are excited to be getting a “Dora the Explorer” desk from them.

Please go and check them out… kids beds

Again here is their store site. Also their prices are really good. I can’t wait for Ava to see this desk. We’ll let you know how it is once we receive it. Thanks again to the CSN Stores!


Again THANKS for stopping by…..we really appreciate your thoughts and prayers!