Friday, October 31, 2008

Happy Halloween!!

Today is Friday and thank goodness for that! I am exhausted and looking forward to the weekend! We have been busy with Mylee this week, attending therapy sessions and parties for her...considering all the stimulation and amount of people she was surrounded by she has been a very good girl! We only have had a couple of meltdowns. And I say this because she has decided she doesn't need to take naps anymore like she use to. We use to be able to lay her down in her crib and let her fall asleep. Well, she has decided she doesn't like her crib anymore during the daytime hours. It has been quite a challenge.
I believe the Pediatric Chiari Gala in Washington DC was a success...I was sent the link to a you tube video of the many faces of Pediatric Chiari Malformation. Mylee has a few pictures that were posted at the event. Please visit:

Mylee had a lot of fun at her Halloween Party at the hospital yesterday. She really interacted with the other children and staff. She even got to make mud with pudding and cookies for her Halloween worm, well she just held the cup with the chocolate pudding and snuck a few tastes here and there.....we will have to watch her breathing this weekend, but well worth it to see her happy little face when she would taste the yummy pudding!! Her homework for the day was to say "Thank You" in sign language and either wave "bye, bye" or say "Bye" at each doorway where the kids got to trick or treat for goodies. We also went to Mylee's friend Payge's house for another party last night. She had a lot of fun playing with toys and making art projects!

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Tonight we will take Mylee with her walker for the first time to our close neighbors for Mylee to trick or treat. She still cannot have anything by mouth, so this will be candy for mommy and daddy (I will probably have Dave take it to work)! I think we will just relax this weekend and focus working on the new nursery. We have a busy week ahead for us. Mylee has her appointment with the neurosurgeon at Children's Hospital and is scheduled for her sleep study test on Wednesday night. Hope everyone has a safe and Happy Halloween!!

I almost forgot, we also carved a pumpkin the other night with Mylee. Oh my goodness, we had so much fun! She really enjoyed herself....actually I think she had fun throwing the pumpkin seeds on the floor for the dogs to eat...she also snuck a few tastes of the pumpkin...I can't imagine that would taste very good....Mylee thought it was great! Enjoy...

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Wednesday, October 29, 2008

Pumpkin Patch 2008

We took Mylee to the pumpkin patch over the weekend..... she had a really good day and had a lot of fun with her friends Emma and Elena...

Mylee loved to ride the train, pick out her very own pumpkin, and loved to say "hi" to all the animals that were at the farm. We are hopeful next year that she will be able to run around like the other boys and girls and be able to pet the animals on her own....

We will carve her pumpkin tonight with Uncle Nicky... Mylee will dress up in her costume tomorrow for her party at the hospital and has another party at a friends house in the evening...busy, busy, busy!

I hope to post new pictures later in the week!


Sunday, October 26, 2008

Happy Halloween 2008

We decided to take Halloween pictures of Mylee in her costume early this year. It becomes too difficult on Halloween night when we are trying to get her ready and tricker treaters are coming to the door. So we made it a fun morning (she decided to wake us up at 6am!) and Mylee got dressed....I think she thinks this is dress up more than her pumpkin witch costume.

We will head out to the pumpkin patch today with Mylee's friends Emma and Elena. We will take more pictures later today. Hoping everyone is having a fun weekend too!

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Saturday, October 18, 2008

Learning to walk....

Mylee did great in therapy this week. She has always been so comfortable with the therapist at the hospital. We are so fortunate to have so many therapist that have fallen in love with our little warrior princess. I think it really helps that Mylee has such a great repore with each of them.

Mylee is working on her "B's" this week. She is getting better saying "Bob" "Bob" for bobby, "baba" with a long "a" for baby and "ba ba" short a for "bye". We continue to work with her each day.

She also has been fitted for a medical walker that will help with her to walk. She has already caught on pretty well and is working on how to turn the walker when she gets into a jam or starts to head towards a wall. I think we are going to have to buy some touch up paint today when we go to home depot! haha

We will continue to work with Mylee each day, we are making some progress and it feels really good. We are still waiting to hear back from Dr. W at Children's hospital in Denver. He has all of Mylee's reports and films and will be reviewing the documents to see if he can possibly help our little warrior princess. We also have an appointment with another neurosurgeon here in Phoenix at Children's hospital in a couple of weeks. And then an appointment with Dr. R (current neurosurgeon) on December 8th. We have a busy next couple of months, but it will be nice when we have some information to help Mylee. We are also currently waiting on another sleep study test, which I am hopeful we will have scheduled this upcoming week. The waiting is what drives us crazy, but we are thankful that Mylee has secondary insurance. We rarely have to pay anything out of pocket, which has helped us tremendously!!

We have several decisions to make in the next several months. We are hopeful that one of these neurosurgeons will be able to help Mylee. Otherwise if there is no evidence Mylee needs another brain decompression at this time, we may need to have her undergo some testing that isn't very pleasant for any of us. Or we may need to make a decision to relocate for a couple of months to enroll her into a speech program out of state. Please continue to keep us on your prayer lists as we will need guidance to help us make these difficult decisions. We will keep everyone posted and if anyone has any questions, please feel free to email or give us a call!

Tuesday, October 14, 2008


We took a break from it all and decided to visit one of our favorite spots in Rocky Point, Mexico. Nana and Papa Spray just finished moving into a beautiful new home. Mylee had a lot of fun helping Nana Cindy and GG unpack the dishes in the kitchen. It was nice to just relax and not have to worry about attending any doctors or therapy appointments.

We took the dogs and Mylee to the beach on Saturday. Bobby and Max loved running up and down the beach chasing seagulls. Actually, Bobby chased the birds, Max actually chased Bobby!! The remainder of the time was spent playing up at the house. We also ventured into town and shopped around for a little bit. Mylee had a great time picking out her new bracelets. She is my little girly girl!

We had such a great time that we will be heading back down to our little home away from home in a few weeks. It will be a great spot for us to get away from it all and concentrate on our family.
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Before we left on our short trip, Mylee got to do some art projects with her occupational therapist. She has a lot of fun coloring and trying out new things. We will be starting PT and Speech with her theraist from St. Joseph's hospital this week. We are excited to get back into the routine of seeing them 3 to 4 times a week. It will be tough driving so far each day, but well worth it in the long run if we are able to help Mylee with any progress.

Mylee is coloring a cloths pin which
will be the stem of her Halloween pumpkin.

Mylee is also learning to string beads onto string and pipe cleaners. Her little fingers and
her right side are getting so much stronger!


Sunday, October 5, 2008

Thought of the day...

Someone I love

Someone I love relies on me in ways you will never understand.
Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted.
Someone I love will never have the opportunities that every child should have.
Someone I love will need unconditional love and support after I am gone - this frightens me to the core.
Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.
Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.
Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.
Someone I love has needs that require more time and energy than I have to give.
Someone I love has needs that mean I am not able to meet basic needs of my own.
Someone I love has needs that have become the driving force behind major decisions my family makes.
Someone I love has changed me in ways I will never be able to describe.
Someone I love has taught me about love and about the really important things in life...
And still others don't understand what it is to be me.. they aren't living in my skin.

Lori Hickman

Mylee is someone we love. She has taught us more in her short precious life than anyone I think I will meet in my lifetime. She is couragious, inspriational, so loving, and happy! We have many battles ahead of us, but she has become a warrior princess and we believe she will achieve it all! Never give up!


Saturday, October 4, 2008

Family fun day at the zoo....

We decided to take Mylee to the zoo today....we met up with cousin Joey, Josh and Nick Dotolo. It was a great time and we hope we schedule to meet there again soon! Now that the weather is starting to cool down in the valley, going to the zoo will be more enjoyable.

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Friday, October 3, 2008

Never Give up!!!

Today was Mylee's modified barrium swallow test. Unfortunately and much to our disappointment she was unsuccessful. She will be discharged from the Vital Stimulation therapy program at Phoenix Children's Hospital. We have an appointment with a new neurosurgeon on November 5th and we will have to wait to see him before any further decisions are made. We attempted to move her appointment up today, however he will be out of the office for a couple of weeks. Once we have new MRI's and find out more about what is going on with Mylee condition we will make a decision to have another surgery (depending on what is found) here in Phoenix or if we want to take her to a specialist in Chicago.

We will need all of your continued prayers as Dave and I are dealing with an aweful lot right now. We are very frustrated and scared. However, we will never give up!!