The 2nd Annual Miracle Race for Mylee Grace and her Chiari & Syringomyelia friends was a success! We are grateful for your support this year. Thank you very much for providing Mylee and her attendees the support necessary to have a successful fundraiser. With your help we were able to bring awareness to our community and increased funding for research. We continue our HOPE that one day the cure for Chiari, Syringomyelia and it other related neurological disorders will be found.
I would like to share with you some high points of our event:
On Sunday, September 20th, 2009 the Arizona Chiari/Syringo Support Group, friends and family joined Mylee Grace at Kiwanis Park in Tempe, Arizona. The day brought awareness to our community, joy to our friends and family and lots of sunshine!!
Our event kicked off bright and early at 6am with the help of the JB Martial Arts program who worked hard to set up the event, help vendors and cheer on participants along the walk route.
Ronald McDonald jazzed up the crowd with a few stretches while DJ KAZ provided music to get the crowd energized. The 2-mile charity walk kicked off at 7:30 with Ronald McDonald leading the way. All participants crossed the finish line and received goody bags filled with items donated by multiple sponsors.
Our raffle at the event was a big hit!! The first raffle item was chosen by another fun guest appearance. NBA Phoenix Suns Gorilla ran around with kids at the event and even caused some mischief with some of the vendors on site. We raffled off fun prizes are so grateful to those who donated. We are also thankful to those who participated with vendor booths, which included; smoothies & popcorn, jewelry & children’s clothing, massage booths, service dogs, and information booths from various companies.
We closed the event with the announcement to Mike Scarpone, CEO of ASAP and with great honor a presentation check with the amount of over $17,000 for research! It was an awesome experience and we are looking forward to getting started on the event in 2010!
Again, I would like to extend my appreciation of how much it means to my family, our Arizona Chiari & Syringomyelia Support group for your support, and the American Syringomyelia & Chiari Alliance Project.
We look forward to the event in 2010, Save the date - October 2nd, 2010 for our 3rd Annual event! For more details visit: www.myleegrace.com.
Sunday, November 8, 2009
Wednesday, August 19, 2009
Homework
Mylee had her first homework experience... we let her decorate the pages of a short story book we put together for sharing tomorrow. Mylee is to show her class and teacher an exciting time she had this past summer. We put together a short book of pictures from her trip to see the "Wiggles" live. She will also bring in her Dorothy the Dinasour stuffed animal to show to all.
Little Khloe is starting to feel a little better. She has been a little sick with pink eye and an ear infection. She has gotten sick a few times this week, but seemed to be a little better this evening!
Mylee received a gift in the mail today too. Auntie Sissy bought her dress up headband and wand of Abby Cadabby from the Sesame street show. Mylee had a blast this afternoon playing with her new items. I took some pictures and video. Hope you enjoy!
xoxox
Little Khloe is starting to feel a little better. She has been a little sick with pink eye and an ear infection. She has gotten sick a few times this week, but seemed to be a little better this evening!
Mylee received a gift in the mail today too. Auntie Sissy bought her dress up headband and wand of Abby Cadabby from the Sesame street show. Mylee had a blast this afternoon playing with her new items. I took some pictures and video. Hope you enjoy!
xoxox
Monday, August 17, 2009
1st Day of School
Our little princess is officially enrolled into her special education preschool class. Today was Mylee's first day of school. It was great to see her in her new school cloths, backpack on, and pig-tails to boot!
We dropped her off at 8:45am and visited with the school nurse briefly before heading out to Walgreens for additional supplies for the school nurse. We raced home not thinking too clearly, realizing having a couple weeks supply of formula at the school would be a lot easier than carting it to school every morning. So, we headed home too to pick up a couple weeks supply and then headed back to the school. We needed to show the school nurse how to hook Mylee up to her morning bolus, it worked out great because one of the teacher aids in the class was also working with Mylee at the table so I was able to show both of them at the same time.
Back home we headed...it worked out well again because I was able to feed Khloe and check email before we headed back to the school yet again to pick our little princess up! Mylee's teacher said she didn't pretty well...she had a couple of crying episodes but overall seemed to have a lot of fun! We will play this game again tomorrow, the next day and then the next!
Khloe is also doing well...she is sitting up, saying "dada", and almost ready to start crawling...its still the cutest thing ever to see my little girls play together!
Here are some pictures of our adventure this morning! More to come!!
xoxox
We dropped her off at 8:45am and visited with the school nurse briefly before heading out to Walgreens for additional supplies for the school nurse. We raced home not thinking too clearly, realizing having a couple weeks supply of formula at the school would be a lot easier than carting it to school every morning. So, we headed home too to pick up a couple weeks supply and then headed back to the school. We needed to show the school nurse how to hook Mylee up to her morning bolus, it worked out great because one of the teacher aids in the class was also working with Mylee at the table so I was able to show both of them at the same time.
Back home we headed...it worked out well again because I was able to feed Khloe and check email before we headed back to the school yet again to pick our little princess up! Mylee's teacher said she didn't pretty well...she had a couple of crying episodes but overall seemed to have a lot of fun! We will play this game again tomorrow, the next day and then the next!
Khloe is also doing well...she is sitting up, saying "dada", and almost ready to start crawling...its still the cutest thing ever to see my little girls play together!
Here are some pictures of our adventure this morning! More to come!!
xoxox
Sunday, July 19, 2009
Winter in July - Phoenix Zoo 2009
We took the girls to the Phoenix Zoo yesterday. We met with Kim and the twins and had a blast! Nothing like having a winter in the summer, especially in our heat! We went from playing in the snow, to getting swimsuits on and playing at the splash pad... Mylee had a lot of fun! It is really fun to start seeing Mylee recognize her friends...I really think she knows Reese and Jack are her little buddies!! We think Khloe even had fun! It warmed up really quick and the girls started to get over heated...we decided to come home and left the zoo without actually seeing any of the animals.... I guess we can get away with that when the girls are still small! Oh well, next time!
Mylee has a new feeding pump. We are really excited about it. She is no longer tethered to her feeding pole or having to sit in her highchair several hours out of the day. The pump is small enough and light in weight for her to carry it around in a tiny backpack...she even loves to wear the backpack....it is super cute!
Khloe is getting so big...she probably weighs close to 16lbs. She is able to roll over from both positions (back & front). She is very smart and has figured out by watching her sister wear beaded necklaces...that she too now has to wear jewelry. I caught her putting on a necklace on Friday while she was sitting in her excersaucer....I was shocked, amazed and a proud momma when I saw her do this!! She will be 6 months old on the 28th!! I have two very girly girls....so much fun!!
Hope you enjoy these pictures!!
Mylee has a new feeding pump. We are really excited about it. She is no longer tethered to her feeding pole or having to sit in her highchair several hours out of the day. The pump is small enough and light in weight for her to carry it around in a tiny backpack...she even loves to wear the backpack....it is super cute!
Khloe is getting so big...she probably weighs close to 16lbs. She is able to roll over from both positions (back & front). She is very smart and has figured out by watching her sister wear beaded necklaces...that she too now has to wear jewelry. I caught her putting on a necklace on Friday while she was sitting in her excersaucer....I was shocked, amazed and a proud momma when I saw her do this!! She will be 6 months old on the 28th!! I have two very girly girls....so much fun!!
Hope you enjoy these pictures!!
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Saturday, July 18, 2009
D-backs game - Thank you K Foundation!!
Mylee was invited to the Arizona Diamondbacks game with her therapist from St. Joseph's Outpatient Rehabilitation Center. It is always so much fun to spend time with these wonderful ladies (Mylee's therapist are all ladies...however, we like Mr. Chris too!!)
We had a lot of fun and hope to be able to attend again in the future! Thank you Brandon Webb!!
Here are some pictures from the day, hope you enjoy!
xoxoxo
We had a lot of fun and hope to be able to attend again in the future! Thank you Brandon Webb!!
Here are some pictures from the day, hope you enjoy!
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| Make a Smilebox slideshow |
xoxoxo
Friday, July 3, 2009
Happy 4th of July
We are home bound this weekend. It was a very stressful week for the Eaton family. May you all please keep Mylee in your prayers. We have a difficult battle ahead for us, especially Mylee. We gain our strength from all of you with your love and support. We couldn't ask for better friends and family! Thank you!!
We had a great day today and ended the day having dinner with Auntie Joey, Uncle Josh, Cousins Nick & Izzy. Thanks for a wonderful evening! It was sweet music to our ears hearing Mylee have such a great time with Nick! We will get together again soon....
We decided to take our 4th of July pictures today, the girls looked so cute! I love being able to capture these memories.... Hope you enjoy them too!
xoxoxo
We had a great day today and ended the day having dinner with Auntie Joey, Uncle Josh, Cousins Nick & Izzy. Thanks for a wonderful evening! It was sweet music to our ears hearing Mylee have such a great time with Nick! We will get together again soon....
We decided to take our 4th of July pictures today, the girls looked so cute! I love being able to capture these memories.... Hope you enjoy them too!
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| Make a Smilebox scrapbook |
xoxoxo
Saturday, June 27, 2009
Sisterly love
Wow, I guess I didn't realize how long it had been since I last updated. We have a lot of updates to catch up on. We have been back and forth from Colorado now twice. Our last trip to Colorado proved to be worthwhile and even if we didn't get any answers regarding Mylee's feeding troubles, we always enjoy spending time with our relatives in Colorado.We have started feeding Mylee food trials a little each day. We have Mylee's respite nurse almost on a daily basis and she closely monitors Mylee respiratory. So far so good! We received some bad news a couple of weeks ago from Mylee's neurologist stating that he thinks Mylee may be experiencing some atrophy to her cerebellum. She was scheduled for a high resolution MRI of her brain, specifically the region surrounding the cerebellum and spine. We have not heard back from her neurologist. Please keep us in your thoughts and prayers, especially Mylee. We feel no news is good news. We will keep everyone posted as we get the results!
Khloe is growing like a weed. She had her 4 month appointment a couple of weeks ago. She is in the 95th percentile in height and 90th percentile in weight (15 pounds)!! Just yesterday, she started sitting up on her own, she can't quite pull herself to a sitting position - I imagine she will be doing this in a couple of weeks....she amazes us more and more.
Both girls seem to really enjoy each others company. It is so much fun to watch them together. We have already had a busy summer. We continue to keep ourselves busy with Mylee's schedule. She continues her therapy treatments several times a week. We have finished her individual education plan for the upcoming school year. Mylee will start special education preschool through our local school district. Although she has been tested to be severely delayed, we believe she will thrive in this new environment and surprise us all!!
Here is a current video of the girls. They really seem to love each other. It will be a lot of fun to watch them grow together and become best of friends!
As a part of Mylee's 3rd Birthday celebration, we have purchased her tickets to see The Wiggles again this year. We will take both girls to the event towards the end of July. We are also getting ready for Mylee's 2nd Annual Miracle Race for Mylee Grace. Her fundraiser event will take place on Sunday, September 20th. Also scheduled in September to raise money for Mylee to attend Chiari Camp will be her Pizza Extravaganza at our local Peter Piper Pizza. For more details on both events please visit her website at http://www.myleegrace.com/. Contact us if you have any questions about donating to either one of these fundraisers :
We will be attending Chiari Camp with Mylee in November. Miracle Wish for Chiari along with CSF have put together a family weekend for familes affected by Chiari Malformation and it related disorders at Victory Junction in North Carolina. To learn more about Miracle Wish for Chiari or Victory Junction, visit these websites:
xoxox
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