Baby Steps

Tuesday, March 13, 2012

Tee shirt information

WOW!! We have had an awesome response to the tee shirt design and have already received a lot of orders. We thank you so much for your support! In order to streamline the process we decided to post this blog with all the information.

The following will be available:

Toddler cotton tee (black) sizes-2T,3T,4T $10
Youth cotton tee (black) sizes-YXS,YS, YM, YL $10
Adult cotton tee (black) sizes-S,M,L,XL,2XL,3XL, 4XL $13
Adult dry fit tee (black) sizes-S,M,L,XL,2XL,3XL $15

Ordering informtation:
All orders must be received by Friday, March 16th
Orders can be submitted by facebook or email-
Please specify shirt type and size and how I can get the shirt to you (more info below) If you are out of town and need your shirt shipped to you, please include your address.

*If you have already sent me a message I have you down, you don't need to send another. I will contact you if I have a question.

Payment information:
Payment can be submitted by online donation (see link below) or check/cash to our address or in person.
Our address

6452 White Tail Drive
Ooltewah, Tn 37363

How to get your shirt:
Christway friends-We will bring them to church April 8th
Knoxville friends- We will be at the Marathon Expo (Expo and Convention center) on Saturday, March 31st from 10:00am to !2:00pm.
Out of town friends- Include you address with your order and you shirt will be mailed to you.

THANK YOU SO MUCH FOR THE SUPPORT!!! It means so much to us that we have so many people helping us raise awareness and supporting our family.

Here is the design for the front of the shirt.....the back will be a surprise!

Click here for online payments:

Friday, March 9, 2012

Team Piper!

We have recently received the official diagnosis of Aicardi Syndrome. We have suspected this for a couple months so it came as no surprise. We joined the Aicardi website and forum for families and plan on supporting the foundation. They provide a yearly conference for families to meet and learn more about Aicardi. They provide hotel rooms and food for all families who attend the conference. The donations they receive provide the funds to do so. Many families would not be able to attend without this assistance.

With that being said, we would like to help raise money for the foundation and for Piper. Justin and I, her grandparents and friends will be running the Knoxville Covenant Health half marathon for team Piper. The race is on April 1, which ironically is the same day we were told there was an abnormality in her brain last year. It will be an emotional day for us. We want to raise awareness for Aicardi syndrome because it is so rare, with only 800 reported cases in the U.S. We would like to donate half of the money to the foundation so they can continue to unite and provide support for families. The other half will go to medical expenses for Piper. As Justin likes to say, we are putting many doctors' children through college.

If you are already running and would like to purchase a Team Piper tee shirt let me know. We are so blessed to have such supportive friends and family! We can't wait to see you in Knoxville. Look for me, I will be the one crawling over the finish line.

For donations click below

Thursday, March 1, 2012

Big announcement!

No, I'm not pregnant again..haha!

Justin got a promotion!!!! We are very excited for him and his new responsibilities and opportunities with his job. He will be traveling more so we feel it would make sense for us to......I never thought I would say this.....move back to Knoxville! He was gone for a long trip and realized it added a lot of stress worrying about what I would do if there was an emergency. It just makes sense for us to be close to family. We will miss our friends that we have made here very much. Our church family has been such a huge support system and we are so thankful God put us here and provided us with an amazing church.

We are putting the house on the market in the next month so we are busy doing home improvement projects. Since we are not sure what the future holds for Piper we are considering building a house in Knoxville that is wheelchair accessible. We will know more as she gets older and we can see if she has the potential to walk. It's just a thought right now. We will have to save up some money before we are able to do this. The good thing is we are on no schedule at all so we will just see what happens with this house first.

As far as doctors go, we don't have a problem switching. So all you Knoxville people...I will need recommendations on a pediatrician, pediatric neurologist, Opthamologist, Pt/Ot etc. Since we are only going to Emory once a month we feel it won't be a big deal to drive another hour.

Piper is doing a lot better on her new medicine. Her spasms have decreased, she still having episodes but they are not as intense. She is still very sleepy during the day but she is more active than before when she is awake. We are working on helping her get stronger, she is still having trouble holding her head up. Her torso is very strong and she kicks her legs all the time so that is great. She is "talking" more and looking around. She is still not smiling which is disappointing because we thought once the seizures decreased her smile would come back. Overall, we have seen huge improvements and are so thankful. The prayers are working!