Happy Sunday!

Happy Sunday! We had a very busy week...Mylee had therapy almost everyday last week and several doctor appointments. She was fitted for her leg braces on Wednesday and was an extremely good girl. She sat on the hospital bed while they wrapped her legs in material that was similiar to a cast and then he cut the so called cast off. These will be used to mold her braces. We have Mylee's first fitting on Wednesday, August 6th. Ironically, this is the same day as our next OB appointment. I can't believe I am almost 12 weeks.

Mylee also had a scheduled appoinment on Friday with Dr. P (opthomologist). Dave and I were almost convinced she would be scheduled for another eye surgery because her right eye has started to cross again. The doctor had warned us that he may need to do a touch up surgery the last time we were in his office. Instead, he changed Mylee's prescription on her glasses and she is to wear them for another 3 months. Our next appointment is scheduled for October. If the eye has not corrected by then using her new prescription, then we will talk about a "touch up" surgery.


Great news on the vital stimulation front! I had a heart to heart talk with the head speech pathologist at Children's Hospital (I probably wasn't very nice) and Mylee will be scheduled sometime in September with a therapist by the name of Lindsay. We are very excited this is somewhat scheduled. Vital Stimulation will be probably our last hope for Mylee in order to swallow properly. We are very anxious to get started! I can't belive she isn't going to be able to eat birthday cake on her birthday! It breaks my heart!! We are still undecided if we are going to cheat a little bit and at least give her a taste of some frosting! I think it will depend on how congested she sounds that day!

We are getting ready to visit Nana and Papa in California. We leave on Thursday of this upcoming week. We are very excited to see our extended family on Saturday at Mylee's birthday party. And of course to see Uncle Will and Auntie Sissy!! We have a lot to do before we leave on Thursday, all I can say is laundry, laundry, and more laundry!

Hoping everyone has had a wonderful weekend! We would like to send a shout out to Nate Heineman, Happy 2nd Birthday kiddo!! We wish we could have made it to your birthday party yesterday....as usual we are late on sending your birthday gift, but no worries because you will receive it very soon!

xoxox

July Update

We haven't posted in awhile, I figured I better post something because we were starting to worry some of you! Everything is going well in the Eaton home. I cannot believe how much energy this new little one is taking out of me....I am extremely exhausted all the time! We went to the farmer's market this morning with our great friends Adam & Laura...we had a great time! It was very warm and Mylee didn't seem to be herself, we ended up leaving a little early and went to breakfast at the 5th Ave Cafe. We were able to hook Mylee up without the medical pole, she was in a better mood after she was able to get something to eat!

The past week or so has been nothing really to brag about...Mylee had her last session with her physical therapist at St. Joseph's. We are very sad to leave our great friends and therapist...however, the traveling to and from the hospital was really starting to wear on mommy! We will start Mylee's new PT on Monday, continue with Speech on Tuesday and Thursdays, and her developmental specialist on Wednesdays. Each are one hour sessions. Mylee is also being fitted for AFO's (ankle, foot orthotics - leg braces) on Wednesday afternoon. And we go to see the opthomologist on Friday. Oh yeah, we finally got the go ahead with the genetic testing too, so we will take Mylee to have that completed probably on Monday. It will be a very busy week.

We are also getting ready for Mylee's trip to California, we have a planned trip to see her Nana & Papa Heffelfinger and to have one of her 2nd birthday parties. We are anxious to see our extended family on my mom's side of the family as well as some ot her family memebers who have said they were coming. It is going to be a great time!

Children's Hospital contacted us last week about Mylee's vital stimulation therapy. We are hoping to start this therapy in the next few months. This is really our last hopes of getting Mylee's swallowing muscles to perform the way they need to in order for her to eat normally. We had started to get a little frustrated because we were not getting any answers as to when she would start this therapy. We should hear something by the end of the year for sure! Just in case, we have looked into other options out of state in both Colorado, California, and Indiana to just name a few.

More to come....everyone is doing well, including the dogs! We hope everyone is enjoying the summer weather - we wish everyone safe travels and to have fun!!

xoxox

GO D-Backs!!!

It was a great day with all of us together as a family....Mylee was invited by St. Joseph's Outpatient Rehabilitation group as part of the Brandon Webb's K Foundation to attend the Arizona Diamond Backs game. Since Brandon was our pitcher for the game today, he was unable to meet with us in person, however he provided us with a welcoming video...In his place we were greeted by Dan Heron - May Pitcher of the month for the AZ D-backs!! It was a lot of fun....

Mylee was given an autographed picture of Brandon Webb, a Brandon Webb official jersey, a Diamond backs baseball cap, and an official ticket to the game. Dan Heron was very nice and autographed Mylee's baseball cap. You know how Mylee can get when there is too many strangers around and in a crowed room with lots of people....well, as she met Mr. Heron and he signed her cap, Mylee's started to put out her infamous lower lip...this of course made people start to laugh a little (and we all know what happens next....) poor Mylee started whaling and cried for several more minutes until her favorite therapist Miss Nicole started to hold her...she was then ready to go and off we went to watch the game!

Mylee did very well while everyone got to the assigned seats...We sat out in left field in the bleacher section, which worked out well because Mylee was able to cruise along the backs of the seats and stand for a little while, we did this off and on until she finally got too tired and fell asleep on daddy. We did better than we thought and was able to stay until about the beginning of the 7th inning. Apparently we left too early because towards the end of the game, D-backs came back with a vengeance and stole the win from the Brewers!! GO D-backs!! We had a great day!! Lots of Thank you's to St. Joseph's Hospital, the outpatient rehab center, all of her therapist, and especially Brandon Webb's K Foundation for the great day and memories we will have forever!!

Make a Smilebox slideshow

xoxox

Quick Update

Sorry it has been so long since I posted last. Things have been very busy as you can probably all imagine. Plus, morning sickness has arrived. And I am exhausted these days....I can barely pry myself out of bed! Poor Mylee just wants her MaMa to play with her....

The fundraiser was a success in my mind. Due to gas prices and the fact that it was close to 114 degress on Saturday, the turn out ended up being approx. 300 people at the races. Grand total raised: $2,000.

Thank you to all who participated in the event, who helped us at the races, and of course those who have supported us throughout this journey. Special Thanks (in case they are reading the blogs) to "Playing God"...Sorry we were unable to party with you in the pits. Mylee fell asleep 5 minutes before the last race....and since I am pregnant too we decided to take ourselves home to rest...Again, Thank you all who helped out with this event and who came out to have fun and watch the races!!

I will try to post pictures later this weekend of the festivities. This weekend will be low key for us. We are dog sitting for our best friends, Brewser always has a blast when he comes to play with Bobby and Max. Mylee loves having another dog around too!

Hope everyone is doing well! I will post again soon....

xoxoxo

Friendships...

We enjoyed our play date with Weidow twins, Reese and Jack are always fun to have around and hang out with! We hope to see them again real soon... Mylee and twins played together very nicely and I believe will grow up becoming the best of friends!

Mylee has also become a great mommy to her special baby from Grandma and Grandpa Eaton. She loves to cuddle, give hugs and kisses, and to walk her baby in her baby's stroller across the great room floor. She is actually starting to play with this baby almost on a regular basis. Mylee was cuddling with her during the evenings when she slept and at nap times during the day. We decided to give up this baby doll and play with her during the day instead. We of course had to exchange her with a new baby doll so that Mylee won't be lonely while she sleeps. She is such a great mommy!!

Speaking of mommy's, Mylee's mommy is going to have a baby too!! That's right we are PREGNANT!! Mylee is going to be such a great big sister, just like she is a great mommy to her baby dolls. We are still very early, in fact 5 weeks tomorrow. Please keep us in your prayers and hope we continue with a happy, healthy fetus...We are very excited and blessed!!

We are so busy just like everyone else, we are now counting down to Mylee's fundraiser. Four days and counting. The big event kicks off at 5pm on Saturday. We are finishing up the touches on the goodies we are putting together. Raffle tickets are being sold to hopeful winners from all over the valley. Thank you to daddy who is helping with sales at his office downtown and to his wonderful employees who helping too! We are blessed to have so many people who are so supportive in our lives. Your eagerness to help and encouraging words are what get us through our journey and of course our little princess who has been a warrior throughout this whole ordeal! Mylee you are our warrior princess and we want you to continue with your beautiful smiles. We are so blessed and honored to have become your mommy and daddy!

We hope everyone continues to have a safe week ahead. We love you all and Thank you from the bottom of our hearts for all of your love and support! May we all live PAIN FREE!

xoxo

First weekend of June

Summer is here! At it is hot in the valley of the Sun! We all enjoyed a relaxing weekend with just the three of us...Daddy spent a lot of time with Mylee this weekend so that I could have a very relaxing weekend.

Daddy played with Mylee and took her to the grocery stores, we were in desperate need for groceries! We rented a several pay per view movies on Friday night and on Saturday! It was a lot of fun just hanging out and watching the television! On Sunday, Mylee and daddy went swimming. They didn't stay out there for too long because it was a scorcher and Mylee likes to put her face in the water in which she cannot. She has already somehow aspirated in the past few weeks which had possibly caused another pneumonia. We are watching her carefully and have started our regiment of breathing treatments several times a day.

Our work week ahead is somewhat steady. Today we have a day off and we took Mylee to preschool for a little over and hour. I picked her up and her nose was oozing with yuckies. I will suction her later. I gave her a bolus feed (breakfast) and she is now napping. This evening we are heading out to Max's Sports grill to sale early tickets for Mylee's fundraiser. The radio broadcast will be live again, so for those who are interested I am sure they will have a segment regarding Mylee's event! Remember the races will start a 7pm on June 21st. The information regarding the event is to the right of her blog, check it out if you wish! Please remember I am putting together "Faces of Chiari" for those of you who have not already sent me your pictures, please email me at: eatonfam1@msn.com. I am hoping to finish this project by the end of this coming weekend.

The rest of the week is filled with therapy sessions and hopefully a little relaxation. Mylee will go back to preschool tomorrow and Thursday, pending how she is feeling and if she has no fever. Please keep your fingers crossed for us that she maintains her breathing as it is today and does not get worse. Otherwise, we head back to the ER (we don't go to the Pediatrician anymore because more than likely he would send us to the ER anyway). We have come to trust our judgement and 95% of the time her lungs are filled.

Have a fantastic week and we will post again soon!


Lots of love,
Eaton family

Fun Day!!

It has been a really great day with Mylee (all days are pretty great)! She had a good time at therapy...she loves her girls there! It was our last therapy day with Miss Nicole and Miss Tara. We have been transitioning Mylee occupational therapy to an in-home therapist. We had to inform Miss Nicole today that we will need to also transition away from St. Joe's speech because we had a speech pathologist call us last night and she will be picking Mylee up as one of her patients. We have our first speech therapist with Miss Michelle the first week of June. She will actually duo with Mylee's developmental specialist next week.

Mylee has been in rare form today. I think daddy is going to need to buy her a computer soon. As I sit here and type this journal entry she is wanting to help me type. Attached is a video I took of her today. She was talking up a storm! She never talks this much, it was great!! I am so glad that I was able to capture it on film...Miss Nicole, check it out!!


Mylee telling a story... 5/29/08



My little peanut took a really long nap again, I think this is a sign she is officially turning into a toddler. No more morning and afternoon naps for this little one...She is only taking 1 really long nap (great for me, I can nap too)!


Mylee's benefit to bring Chiari Awareness to our local community is really starting to come together...We have recorded a radio commercial, our friends and family are helping contribute to the event, and our wonderful friend Shawna is doing an outstanding job getting donations and other goods from business all over the country. Please see the information regarding "Miracle Race for Mylee Grace" on Mylee's website. Feel free to send to anyone you can think of that might have an interest to donate to this wonderful cause!
We have recorded a commercial for the fundraiser on a local radio station. Here is some information regarding the radio station: Broadcasting live every Monday night from 7 to 9 PM on Independent 1310 KXAM and KXAM.com, you can find the Racing Roundup-Arizona Crew at their home, Max's, Arizona's Legendary Sports Bar located at 6747 North 47th Avenue in Glendale, AZ. We also went live on the radio last week to talk about Chiari and Mylee's fundraiser. I am also putting together a poster size 'faces of Chiari'. I want to display the faces of Chiari and show people how many innocent children and adults this effects. We are really excited about the event. Let me know if you have any questions.
Barnett Harley Davidson is donating items (unsure of items, large box will be mailed 10 days prior to event
Phoenix International Raceway donating these items:

• (1) certificate for two reserved grandstand seats to the NASCAR Craftsman Truck Race on Friday November 7, 2008
• (1) Certificate for two reserved grandstand seats to the NASCAR Nationwide Race on Saturday November 8, 2008
• (2) April 2006 Subway Fresh Fit 500 race posters autographed by Joe Nemecheck
• (1) #43 Bobby LaBonte autographed souvenir card
• (1) Official NASCAR preview & press guide autographed by Kasey Kahne & J.J. Yeley
• (1) Phoenix International Raceway engraved 4 piece travel mug set including case
• (1) Phoenix International Raceway backpack
• (1) Phoenix International Raceway tote bag
• Max's Sportsbar: 2 $25.00 gift cards
• Olive Garden: $25.00 gift card
• Red Lobster: $25.00 gift card
• Walmart: $25.00 gift card
• Target: $25.00 gift card
• Elite Tattoo: 2 $100.00 gift certificates
• 'Playing God' band logo souvenir's - This very popular local band will playing a free concert after the races!
• Salon: $40.00 gift card

We also have T-shirts being made for the fundraiser, all proceeds will go towards the amount we donate to each charity.

I will be off the computer for a few days, this will be my last post for about a week. I will try to post a new journal entry soon!

xoxox