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

Fun Memorial Day Weekend...

We hope everyone had a wonderful time this weekend and most of all ended with everyone safe and sound! Dave and I finally took everyone's advise and just relaxed. Saturday and Sunday was filled with just hanging around the house and watching television. It was perfect!

Monday we enjoyed the early morning, Mylee woke us up at 6 am! We had a blast with our great friends Adam & Laura & Emily & Devin who drove down from Colorado. We gathered in the kitchen; fixed yummy pancakes with bacon and sausage and had a bowl full of fresh fruit. Those recovering from the night before also enjoyed a bloody Mary! We hung by the pool and of course had to rock out with a new formed band (Dave loves it when enough people come over to play his "rock band" on Xbox)!


In the evening we headed over the Benjamin's and enjoyed a fabulous dinner with all the kids. Andy and Heidi Macfarlane were there too! Dinner was delicious and more importantly the friends we were surrounded with was the icing on the cake (brownies in our case because that is what we had for dessert)!



Memorial Day is always a day to remember! It brings great family and friends together. It reminds me that summer is right around the corner, but most of all it is the day of remembrance for those who have died in our nation's service. We want to thank all the service men and woman who bravely defend this proud country we live in, in order for all of us to be free!

Mylee is great (as always), we think she must of cut another tooth because of all the episodes she displayed last week. She is starting to take very long naps each day, we think she is starting to ween herself from two naps a day. She has learned a new word over the weekend. She can now say "Up"...we are practicing with her because she likes to play this game now, when we start to count 1,2,3.. and say "Up"...she will actually stand up! So she surprised us and when we started counting...she was the one who said "UP"! She is really starting to become a little girl, no more baby in this little one....Oh, she is also becoming quite the character...she will now make funny faces when you ask her to smile or look at the camera...We aren't going to be too surprised if we get goofy pictures of her for the next couple of years!! Silly girl!












xoxo

ps. For those of you who are interested in the cute hair bow Mylee is wearing in the bottom pictures, please email me separately and I will provide you some information as to how you can order some. I met a realy cool lady and her sister at a cupcake store in Scottsdale and they are starting a small business. I can email you more individual pictures as well as pricing. I love them!

Our Saving Grace

Despite it all...she continues to GRACE us with her amazing attitude, her contagious smiles, and her loving spirit! Mylee is still having a rough time today, I have only been able to give her about half of her normal dose of formula during each bolus feeding today. She is retching horribly today and was actually able to vomit a small bit of stomach fluid. I took her temperature and she is running a slight fever. My fear now is that she has aspirated some fluids, we shall see in a few days if she starts to sound junky. Please keep your fingers crossed that she does not get pnuemonia again!

My brave soldier has battled so much, but she perseveres and continues to fight as if this is just any ordinary day! It is that attitude, those smiles, and most all of her loving spirit that keeps us on the right path! Yesterday I was feeling pretty blue, but my baby girl is always able to make feel better. She has shown me so much in the past 21 months that everytime I look into her pretty blue eyes it reminds me of how much of a warrior she has become and I am able to turn those yucky blues into the hues of all colors of a rainbow!

For You
Author Unknown

If I could catch a rainbow
I would do it just for you
And share with you its beauty
On the days you're feeling blue
If I could build a mountain
You could call your very own
A place to find serenity
A place to be alone
If I could take your troubles
I would toss them in the sea
But all these things I'm finding
Are impossible for me.
I Cannot build a mountain
Or catch a rainbow fair
But let me be what I know best
A friend that's always there.

xoxo

keeping HOPE....

Trying to atleast...I just got finished with venting on Mylee's caringbridge site...I feel a whole lot better now. Plus, Mylee just woke up from her nap (she fell asleep in the car on the way home from her GI appointment) and she is eating now while she watches Sesame Street.

It has been a whirl wind of a week...I am exhausted to say the least! I didn't think I would post today, but I figured I need to post something because I was negative on Mylee's other site. I keep telling myself to have HOPE! Everyone has been so wonderful keeping up with our journey and posting well wishes in Mylee's guestbook. Thank you to all of our family and friends who have been so supportive, we love you all!

This post will be short and sweet. I will post more this weekend. I would like to get some pictures posted of Mylee in the pool. Our camera is out of commission at the moment, but hopefully we will be able to take pictures this weekend.

An Inspirational Thought, Motivational Thought
Poem for Hope
by Catherine Pulsifer

As long as we have hope,
we have direction,
the energy to move,
and the map to move by.
We have a hundred alternatives,
a thousand paths and infinity of dreams.
Hopeful, we are halfway to where we want to go;
Hopeless, we are lost forever.

xoxox

Many thanks.....

It is such a blessing to know how much support Dave and I have...I can't tell you because their really isn't enough words to express our gratitude toward all of you...you, meaning our friends and family who have been so supportive of us throughout this whole ordeal. So....THANK YOU!

I am really starting to believe that Mylee was put on this earth to show us love, courage, patience, trust and the list goes on and on and on....I have always been told since she graced us with her presence that she was "special". We just didn't realize I guess just how "special" she really is! Her illness has brought us so many new and great friends and has bonded us closer with the friends we have always cherished! She has shown our parents near and far just how great of parents Dave and I have become! I/We are told on a regular basis just how proud our parents are of us and I have to say that really feels good inside! I think the reason I am expressing this to you all today is because I am really thankful you are in our lives!

I have been asked to be a board member in hopes of making Miracle Wish for Chiari a reality for every child battling Chiari Malformation and other related illnesses and/or diseases. I have thought about it and I think I am going to go forward with accepting the offer. I believe that everything that has transpired thus far has happened for a reason...so we must battle forward in hopes conquer our goals at bringing awareness to our communities and beyond and to help find a cure for this devastating illness!

Mylee as always seems to be happy, she has been fussy the past couple of weeks - but, I think that is more of the terrible two's that we are seeing and definately her molars that we are so thankful she is getting (not that she needs them right now anyway...she can't eat anything)...I wish I could put that part of the development on hold and allow her to develop more in other areas...I could use an EASY button anyday now with this whole teething action! She had a wonderful time over the weekend splashing like a fish in the pool. I wish I could let her just dunk fer face into the water, she wants to so badly! I keep my fingers crossed everyday that we will get that phone call from Children's Hospital about the Vital Stimulation, I will give them a call again next week just to remind them of how anxious we are...haha

Last evening, Dave and I and a bunch of our friends joined us at Max's sports grill to show us there support as Shawna Green (an amazing woman) and I went LIVE on the radio to broadcast Mylee's fundraiser for Chiari Malformation. We had so much fun!! We also recorded a radio commercial that will broadcast on the radio until the big event! Thank you Shawna soooo much for being who you are. You will always have a special place in our heart!

Summer is here, the temperature is like a fever now and we were blessed with the triple digits. Tomorrow is suppose to be back down into the 90's - whewwww...It is HOT HOT HOT!!!

For more information regarding Mylee's fundraiser please see her flyer and poster at the right of this blog...or email me with any questions!

xoxox

T.G.I.F

Happy Friday everyone! And Happy Birthday Uncle Troy!!!

We need some extra prayers for Troy, he is held up in a Hospital in Hawaii at the moment. He has been battling pnuemonia (I can't seem to get away from pnuemonia, folks!!!) for the past several weeks. He ended up being re-admitted because of an abscess found in his left lung. He currently has a chest tube to help relieve the pressure in his lung. His right lung is looking great. We spoke with him last night and he sounds pretty good. We love you "Uncle Troy" and Mylee is sending you her special hugs and blowing you her kisses!!

We have no plans this weekend, how wonderful does that sound! We actually will be staying home to relax!

We are continuing to work on Mylee's fundraiser and it is really starting to come together. I am getting very excited. Dave and I along with our great friend Shawna will be on the radio on Monday evening, June 19th to talk about her fundraiser. The radio station is a local broadcast here in Arizona. 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.

I am excited to announce, the band Playing God will be at Mylee's fundraising event to perform after the races in the pits. The lead singer of the band, Mike Dryden will perform the National Anthem. We will also have a table up front for our raffle. I believe a lot of prizes are being collected to raffle off. Those prizes will be named soon! Stay tuned....

Also, Hooter's girls will be on site to take pictures with fans before the races and will be that nights trophy girls...Ssinister Choppers will have customer choppers on display. They are currently doing a Choppers Challenge on CMT Wednesday nights, so check it out!

We are all very excited about Mylee's fundraiser and hope we are able to most importantly raise awareness of this horrible illness and be able to raise money to help finding a cure and be able to send Mylee to camp one day! Please visit ASAP's website at http://www.asap.org/. This will help provide Research, Education and Support for families dealing with this illness. Also visit, Miracle Wish for Chiari at http://www.miraclewishforchiari.com/. I believe this organization is still looking for a "champion" sponsor, someone who can really give enough support to open this camp! If you think you may know of someone or a company that would be willing to get this camp jump started, please let me know!

xoxo

Happy Tuesday!

Good morning to all of our family and friends! Mylee is already napping for the day and I think I might join her! Yesterday was such a long day for us, I actually ended the evening early and went to bed with my massive headache! Thankfully, I woke this morning feeling a 100 percent better.

Mylee's appointment yesterday with the nurse practioner in Dr. K's (pediatric physiatrist) office went I guess as well as can be expected (I don't have any high expectations for Mylee's medical professionals anymore)! Sorry I am just a little bitter right now because I want my baby to be normal!! But, I know you are asking yourself what is "normal"...well, I mean I just want her to be walking, talking and eating normally!! We will get there!! They think she will need orthotics to help with her balance and correct her feet/ankles that tend to bend inward when she is standing/walking...However, her physical therapist doesn't think she needs them at this point...so, we wait to see what her therapist and Dr. K and NP will decide. We will be seen again in 2 months. We will hopefully know something before then....stay tuned!

Okay, now on a more positive note Mylee is currently featured as the brave fighter on the brave figthers website. Here is some information regarding this link: "There are so many brave fighters out there, each fighting a difficult battle every single day. This site is to find comfort in the knowledge that we are not alone and to learn from the journeys that each of us walk every single day. It doesn't matter where we are in our journeys or whether we have completed the journey in some way or another, what matters is that we remain an inspiration to all we meet along the way"

Go to: http://bravefighters.synthasite.com/

Have you heard of The Little Heros Project? Mylee is our little hero! Go to: http://www.littlestheroesproject.org/
This is a realy cool idea...The founder of this site is writing a book. Mylee's story is currently featured on this website: www.thethingslifehastaughtme.com

I also got an email from a parent on a forum that I belong to regarding parents of children with Chiari Malformation. There was story broadcasted on the Good Morning America show I believe sometime last week. Fortunately, Mylee doesn't experience this symtom and is able to rest peacefully during naptimes and at night. However, check this interview out. I think it is fantastic that the public is becoming more and more aware of Chiari!

I am really excited to annouce that Mylee's fundraiser is becoming more a reality. We met with our friend Shawna and her family last evening. A radio broadcast of Mylee's fundraiser benefit is going to be aired weekly until the event on June 21st. Shawna and I will be talking on the radio next Monday to add more information, I believe this will be recorded and aired continuously until the event in June! Please view the details of her fundraiser at the links on the right side of Mylee's blog. If you have any questions, please feel free to contact me!

Thanks for all of your love and support!!

xoxox

A prayer needed...

Today is a beautiful day for many and yet some mommy and daddy's are in so much pain. I want to dedicate this journal entry to a family and friend of Mylee's from our caringbridge world. Miss Audrey Lawrence in Missouri earned her angel wings early this morning! Please keep this family in your thoughts and prayers today as they are going through a tremendous amount of pain today. Fly high precious one!!

Dave and I have learned so much in life in the past year and half. We treasure each moment as if it is our last and keep each little memory dear to our hearts. If I were to give any piece of advise to anyone who asked me I would have a simple answer and that would be to live life to its fullest and to keep those complaints that we all seem to vent about to a minimum. Remember someone out there is having a worse day than you are....

A mom of a friend of Mylee's posted this on her daughters caringbridge site today and I thought it would be fitting to also post here. Yesterday was day we all honored our Mother's. This is an inspirational essay written by this author who explains how God chooses moms for kids with special needs.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children.Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

'The angel is curious. "Why this one God? She's so happy."

''Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

''But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

''I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world andthat's not going to be easy.

''But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.She will never take for granted a 'spoken word' . She will consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

''I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone.I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "mirror will suffice."

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We had a terrific weekend with Mylee. It started out kind of rough, but we ended it well with relaxation on Mother's day! Happy Mother's Day to all you mommy's out there!!

Friday, we visited with our friends from Idaho and sweet little Olivia! She is such a cute baby doll! Her and Mylee had a lot of fun on Friday night playing together...we hope we will get to see them again soon! Happy belated 1st Birthday Olivia!! We made Olivia an honorary princess for the evening!


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We had a little bit of a scare Saturday morning, Mylee woke up early and when Dave went in to check on her her feeding tube had fallen out! Off we went to Children's Hospital to get her feeding tube placed back inot her tummy. We were out of the hopsital quickly and went ahead with our planned BBQ in the afternoon. Mylee had some of her favorite buddies over to play.

Happy Mother's Day!

I love the choice I made to become a mother! I wouldn't change this title of MOTHER for anything in the world. Mylee Grace has taught me so much in life and has made me the mother that I am today. She continues to inspire and amaze me every moment that I have with her. Please cherish every moment you have with your children. Happy Mother's Day to all you Mommy's out there!!

We had Mylee at Children's Hospital yesterday morning (I was so fearful I was going to spend another Mother's Day in patient with Mylee). Fortunately, my prayers were answered and the doctors were able to get Mylee's feeding tube re-inserted. Sometime during the early morning Mylee's feeding tube fell out.

We have an appointment with Mylee's Physiatrist tomorrow at St. Joseph's Hospital. We believe Mylee will need leg braces. I will probably question them about getting Mylee a Gait trainer too. We think this might help Mylee with walking. She is still very off balanced and falls constantly. Please pray for Mylee as she needs all the prayers we can possibly get for her. Her poor face and head are all bruised from her falling! Please pray my baby will walk soon!

I leave you with this peom, unknown author:

A Mother's love determines how
We love ourselves and others.
There is no sky we'll ever see
Not lit by that first love.

Stripped of love, the universe
Would drive us mad with pain;
But we are born into a world
That greets our cries with joy.

How much I owe you for the kiss
That told me who I was!
The greatest gift-a love of life-
Lay laughing in your eyes.

Because of you my world still has
The soft grace of your smile;
And every wind of fortune bears
The scent of your caress.

xoxo

Back to the grind...

We are home from Colorado. We had a blast as always... Mylee met new friends and was able to play with some old friends... I won't need to write too many words on this blog because I am going to post some slideshows of pictures that we took in Colorado and the pictures tell it all!

We are back to our normal schedule starting today. Mylee slept in this morning till almost 9am! I couldn't believe it! We went to the grocery store and she is now laying down for a nap... We start back up with therapy later this afternoon. She has speech at 3pm and physical therapy at 4pm.

Enjoy the pictures!!

Nana & Papa's backyard:

Make a Smilebox slideshow

Pearl Street Mall (in Boulder):

Make a Smilebox slideshow

Going to see the horsies & barn kitties:

Make a Smilebox scrapbook

We hope everyone enjoys the rest of the day!! It is warm here in sunny Arizona!!

xoxox

Miracle Race for Mylee Grace....

I don't think I quite understood the challenges that we would be faced with on a daily basis with Mylee's condition, Arnold Chiari Malformation. It is becoming a reality that we could be faced with many more challenges. Our daughter Mylee Grace is almost 21 months old; she is not walking, doesn't talk much, and still tube fed because our baby doesn't know how to swallow properly. I don't know about you, but before we were faced with these challenges; I took for granted that I could walk (and even chew gum at the same time), I could talk without any problems, and I can eat whenever I want!

We have been blessed with a great family, a great extended family, lots of dear friends, and friends out there that we have not even met physically but who are dear to our hearts! Mylee will be a guest of honor at a benefit to raise money in her name for Arnold Chiari Malformation. We have chosen two charities that are near and dear to our hearts. ASAP has sponsored several ground breaking studies pertaining to Chiari, including the genetic study which has recently allowed researchers to identify the possible gene responsible for Chiari. Please help us raise awareness and give to these charities who need these donations in order to continue research for Chiari. Dave and I would like Mylee to attend Chiari camp when she is older. Please help us make the dream of Miracle Wish for Chiari a reality for all children with Chiari and other related illnesses to attend camp. Lets come together and bring awarness to our communities regarding Arnold Chiari Malformation!!

I have posted the Fundraiser information on the right side of Mylee's blog. Please view both the poster and flyer information. The website for these sites are also listed. Please view these websites and spread the word about Arnold Chiari Malformation!!!

xoxox

Happy Cinco De Mayo...

Mylee is starting to feel better we think...we are only having to give her breathing treatments a few times a day now...She had a lot of fun yesterday playing in Nana & Papa's yard. She helped Nana plant some new flowers in the front yard and played hard in the tulips in the back...We took lots of pictures, I will hopefully post them a little later. Mylee had a slight fall though and bruised her cheek...I told Papa Spray not to worry, she is going to have lots of falls!!

We continue to help Mylee walk, her ankles seem to be weak...we will talk with her physical therapist and hopefully will get some answers from her physical medicine doctor on May 12th. Mylee may need to wear braces on her legs/ankles for a while. I estimate we will have her walking by the end of the year! Please pray her legs will continue to get stronger!!

We have plans to head into Boulder later today. We want to buy Mylee her 1st pair of Crocs... I think some hot pink or purple ones will be cute! She won't be able to walk in them, but she will look so cute!!

Hope everyone is having a great day....Make sure you drink a Margarita today!! Happy Cinco De Mayo!!

xoxox

An official Princess....

It is my pleasure to introduce to you her Royal Highness Princess Mylee Grace. Mylee has been proclaimed an official princess dated, April 28, 2008 by The Princess Project. I will be posting pictures later with her tiara and sash. This is an International Charitable Foundation who contacted me through Mylee's caring bridge site and asked if she could be crowned a princess.

Mylee is still a little beat by this pneumonia. We had her back at the ER yesterday and spent most of the day at Mendy's Place. Mylee's oxygen was low and she was having difficulty breathing. More xrays were taken and Mylee now has pneumonia in both lungs! They gave her a dose immediately of Orapred (oral steroid) through her G tube (although this makes her irritable) to open her airways. She was then given an IV antibiotic to help combat the infection. Blood was taken to be tested and all counts came back within normal limits. It is believed that she has both viral & bacterial pneumonia right now. We were sent home with another antibiotic that she will take for a full 10 days. In the meantime, we will help combat the difficulty breathing with SVN treatments every 2-3 hours (breathing treatments) and chest percussion therapy (CPT).

I will post more later after I take some pictures of our little princess in her sash and tiara...she also received a pretty bracelet and princess book - she loves to read all her books!! Thank you to the wonderful organization who sent us all these wonderful gifts and more importantly thinking about Mylee and believing that she would become a beautiful and honored princess. She will make you proud!

Make a Smilebox scrapbook

xoxox