We Need A New Goal For Buddy Walk!!

Wow!! Thank you so much to all who responded so quickly and signed up for Ellie's team, made donations and/or passed the word along to friends and family. Thanks a bunch also to my sister Shelly for hosting a last minute garage sale to raise funds (she did practically everything...all I did was bring stuff over to sell). She set up a sign at the entrance letting everyone know what the funds from the sale would be used for and some people didn't even buy anything, but just gave donations. We made $350 to contribute to our team!! With that addition, our team reached the $1,000 goal in 5 days!! I'm setting a new goal, so keep passing the word. We have until October 11th to collect donations. You can also still register to be on Ellie's team, your t-shirt will just not have Ellie's Mission on the back, but we will know you're with us!!

As for Ellie, she continues to be busy. She now has a total of 11 teeth! I believe 5 of those were just in the last few weeks. She has also figured out how to get into a sitting position from being on the floor. Unfortunately, it is the wrong way (she does the splitz, bad on her hips). We've been working on the correct way, and she is getting soooo much better at it. We've also gotten her Hip Helpers (they look like biker shorts that have been sewn together). She has to wear them twice a day for 30 minutes. She does not like them. They really make her work hard and don't allow her to be so flexible with her legs. It really seems to be helping her get stronger.
The big news: 2 weeks ago we were told we could take her off her tube for 9 hours straight a day!!! This has been so awesome!! It is so nice to pick her up and not worry about a tube. Unfortunately, the girls have forgotten to be as careful when she is hooked up, but I just keep reminding them. The other big news: She said "Shoes" and "Ball" (ball is not as clear, but is definitely what she means). I think Dave grinned from ear to ear when he heard her. Her signing is sporatic but she has made signs for milk, more and drink. If she wants to talk instead though, I am very okay with that!!

A Subject Close To My Heart--Buddy Walk

This is a copy of an email I am sending out today. In case, I've missed your address, which is entirely possible, please take a moment to read it and/or share our website with others. THANK YOU!:

Dear family and friends,

Many of you know what our daughter Ellie has been through in the past year and a half and many of you have helped us out in so many ways. To this we say Thank You so very much! What you may not know is that we found out that Ellie would be born with Down Syndrome about a month before she was born. At the time we received the diagnosis, we were given a packet of information from our doctor's office. We didn't know a lot about Down Syndrome at the time, so we read everything we were given. We sent in the reply card enclosed and the Kansas City Down Syndrome Guild sent us a huge package full of books, brochures, a DVD, and even some gifts along with a very nice letter letting us know that they were available when and if we needed them. We also received a call asking us if we would like support and information from another family in our area who had a child with Down Syndrome. At the time, we declined. Her medical issues and just the knowledge that she would have Down Syndrome were incredibly overwhelming. But, what we did do was read the info and books they sent us cover to cover. It was this information and one of these books that gave us the knowledge we needed to ask the right questions after Ellie was born. It was reading one of these books that led us to ask for the Echocardiogram that discovered the hole in her heart. I'm sure the hospital would have done this anyway, but in a situation where you feel completely powerless, it gave us a little bit of power. The doctors appreciated our newfound knowledge and we're sure this is why they were able to discuss Ellie's situation with us so candidly.

The reason we're sharing this with you is because we are participating in the the Buddy Walk this year. This is the Kansas City Down Syndrome Guild's main fundraiser. The money donated is used to send out packets of information to doctor's offices like mine, to buy books like the one we received and send them in care packages to families who have just received the news that their child will be born/has been born with Down Syndrome. It is used for activities that allow families of children with Down Syndrome to interact and learn from each other and it is used to help families, whose child has to be hospitalized, offset some of their costs. And these are are only some of the ways in which we have been helped by the Guild. There are many more ways in which the money that is donated to them is used.

Please consider visiting our Ellie's Mission team site at http://www.kcbuddywalk.org/ . If you would like, you can make a donation to the Kansas City Down Syndrome Guild from the site or you can join our team, help us to raise money and walk with us at Arrowhead Stadium on Saturday, October 18th. If you decide to join our team, please sign up by this Friday, September 19 so you can have our team name on your shirt!

If you've gotten this far, thank you for taking the time to read about a small part of our journey no matter what you decide to do. Please feel free to pass this email along to any of your family and friends.

David and Natalie Wonnell

Update

I didn't mean to stay away so long. So many things happening around here. Sydney and Reagan started school. Sydney loves 1st grade. I was worried about how she would handle a full day, but she actually adjusted really well. Her favorite thing though is taking the bus to Dave's school after her school is out and playing with some of her new friends until his workday is done. Dave says she has so much fun, he has to really talk her into getting into the car to come home. I miss not getting to see her so much, but I know she is having a ball. Oh, and she was chosen by her teacher to be this month's "High Five Club" student (has displayed the characteristics of trustworthiness, caring, citizenship, responsibility and respect). Her picture will be hanging on a bulletin board in the lunch room. We are so proud of her!!

Reagan is doing well too. She likes getting to leave with Sydney and Dave in the morning. They drive to Dave's school then a bus takes them to the elementary school. We hear from her teachers that she is very good in school, has great manners and is kind of quiet (yes, you heard that one correctly...a surprise to us). The only difference that I have noticed in her lately is that she is very clingly. She tells me a lot that she misses me when she is in school (she goes M-F in the morning).

The newest girl is doing fine. I had another sonogram yesterday and there is no sign of impending labor. Docs thought all looked well. She is looking healthy, weighs 2lbs, 8 oz (I think) and her growth shows her 5 days ahead of schedule. She does appear to camera shy. They tried to give me a 3-D shot of her face put she wouldn't take her arms down. As for names, we still have no clue.

As for Ellie, she has been continuing with her growth spurt. She now has a total of 9 teeth! Yes, they have been coming in like crazy. 2 just in the last week and 2 more almost ready to break through. She is pivoting all over when she is sitting (moving herself in circles) to reach what she wants. We have been practicing getting her on her knees and standing. It's hard work for her, but we've been seeing improvement. She waves hi and bye now (though not always right away) and loves pat-a-cake. She has figured out how to do the "roll it up" part with her hands and has gotten better with the "throw it in the pan" part (throwing her hands up in the air--this is hard for her). Just Friday, she surprised me with getting into sitting position on her own. I'm still not sure how she did it. She was laying down when I went into the kitchen, then I heard her fuss, came out and she was sitting up happy as a lark. She's only done it 2 other times but I'm sure she'll have it down soon. We've been working on it for weeks. She desperately wants to crawl to things on the floor but has not figured out how to coordinate her arms and her knees yet. Exciting news on the eating front is that we are working with a dietician now and I have her eating orally 5 times a day (3 meals, 2 snacks) and off her tube for 5 hours a day). We do a lot of counting calories...she needs around 150 per meal and 100 per snack. We see her again tomorrow and I hope we have worked hard enough to be able to double her time off the tube (the next step). This would basically have her off most of the daytime. Oh, and yesterday I got her to drink 8 oz of milk throughout the day (very thick and spoonfed sometimes)!!!! This is a major record!! If you remember, this is the part we struggle with; eating is no problem.

Isn't this pic awesome?!! You can't even see Dave behind her holding her up.

And great news, we are now part of the high speed internet world, so I'm attempting to add new pics to the site.