Needing prayers!

Mylee failed her Modified Barrioum Swallow test today. She in fact aspirated the solid portion of the test immediately into her trachea (not a good thing in order to breath)! This is very frustrating for Dave and I. We only want was is the very best for Mylee and so far her entire life has been anything but that! We will continue to spoil her with endless love and keep her as pain free as possible. Thank you to all of our family and friends who have been so supportive to us throughout this journey. It looks like we will need those continued prayers. For now, we will wait to hear from Children's Hospital who will contact us to schedule Mylee for Vital Stimulation therapy.

Our journey continues....

xoxoxox

Gracious Smile!

Our daughter Mylee Grace is such a precious gift from GOD (Thank you GOD)! Mylee you have such a gracious smile all the time every day! I learn from you all the time and you have taught your daddy and me so many things, most importantly patience!

This weekend has been so much fun. Dave went camping with "the boys" to Four Peaks. Mylee and I hung around the house to do some spring cleaning and out for a little bit on Saturday to do some shopping. We had lots of "mommy and me" moments I will forever remember!


A Daughter's Gift
Submitted by: scrappin hippo
Author: Robert Sexton

When I imagine the life you will live,
I think of the pleasure your presence will give.

I see the joy your smile will light and the wonders you'll weave
when your dreams take flight.

I feel the hope that will grow with your grace
and the difference you'll make to each heart you embrace.

I imagine your life as I know it will be;
for, my daughter, you've given all this to me.

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"Wiggles" time....

Good morning,

We are having a rough morning, Mylee is starting to show signs that she may possibly have pneumonia... I can't tell as of yet is she is having trouble breathing, but is coughing and has been running a fever for a couple days now (even on Motrin). Children's hospital called this morning to check up on her from her surgery and suggests we take her to the pediatrician's office. She is sleeping right now and I will check to see how she feels when she wakes up.

I purchased tickets for all three of us to go to the "Wiggles Live" on Saturday, April 5th. I think I am more excited than Mylee will be. She may a little too young and probably will not remember the day, but life is too short and all three of us deserve a fun day together!!



xoxo

Recovering from eye surgery

Happy Wednesday everyone! We have survived another surgery with Mylee. Poor baby has been through so much! She is our trooper and happiest girl I know! Her eyes bother her every so often and she wants to itch them sooooo badly! Mommy and daddy are helping to combat these urges. Mylee has eye cream that we apply 4 times daily and cool compressions with a wash rag are helping with the urges to itch! Mylee is running a slight fever this morning, but we were told this is pretty normal after surgery. I will be keeping an eye on her and will give her more Motrin if needed. We are happy to have this surgery behind us and pray this will be it for awhile on any surgeries!

This week will be fun as we will remain home bound until Mylee recovers a little more. Lots of mommy and me time will be fun and needed for both of us! I believe earth day is approaching and I would like to get out into the backyard to plant some flowers. This will be a fun project with Mylee and I.

We are looking forward to Mylee's modified barrium swallow scheduled for Monday, March 31st. We hope to see some vast improvements with her swallowing, however we don't want to get too ahead of ourselves just in case the muscles aren't quite ready to let Mylee eat through her mouth. I really hope we can start with some oral feedings (I know Mylee's speech therapist is really looking forward to being able to give her some feeds). My goal is to atleast be able to let her have some cake at her 2nd birthday in August. We have lots of time until then!

I rearranged the furniture this morning in our TV room, I like the arrangement and this will give Mylee more room to use her walker toys and be able to play back and forth from the kitchen to the TV room. Attached are some photos from our trip to Colorado. Enjoy!

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Hugs,
Sara & Mylee

Happy Easter!!!


We hope everyone has a wonderful Easter today! Mylee is getting ready for Church. The Easter Bunny has left some goodies out on the front porch for Mylee. We are going to have a funfilled day with family and friends.


It snowed last night here in Colorado. It is absolutely beautiful. Mylee is going to possibly make a snowman later today. We will take lots of pictures. Here are some great photos of some of the events from last evening. We hope you enjoy!

Easter Hugs,
Mylee & Sara

Easter Weekend Fun!

Happy Saturday everyone! We made it to Colorado!! It was an exhausting journey as our flight was initially delayed (1 hour). To our surprise, Mylee threw an absolute fit on the airplane at take off. She screamed for 45 minutes! It was heart breaking...absolutely nothing Dave and I could do to make her happy or to calm her down. She finally fell asleep and slept the rest of the flight. I will be giving her neurosurgeon's office a call on Monday to find out if it possibly could be pressure on her brain that is making her miserable on take off. I am a little nervous to fly home!

We are having a great time now at Nana & Papa Sprays. Mylee received a new pillow radio and new purse. She is loving her new toys and settling in nicely. We have plans to go down to Pearl Street Mall later today in Boulder. We hope to find Mylee some CROC shoes. We will also color Easter eggs later today.

Easter Sunday will also be filled with fun events! We will attend church service with Nana & Papa at GG & GG Klassen's church. Mylee will hunt for Easter eggs at Auntie Katie's & Uncle Billy's. We will also go see the horses out at the Wyton's. It is gorgeous here in the Rocky Mountains, a little cool but all sunshine!!

Happy Easter!

XOXOXO

Happy St. Patrick's Day!!!

Today is a much day thus far... Mylee had physical therapy with her new therapist. It was more of a meet & greet session. I wasn't too impressed, but this could just have been the lingering affects of yesterdays afternoon drama with Mylee. I am going to try to keep a positive note and give it a little more time. Her therapist said she would be contacting Mylee's old therapist (they know each other from school). We are still waiting for in home therapist to contact us, it has only been a couple of weeks. I am hopeful it will be soon so that we can start a somewhat normal routine.

Mylee is certainly becoming more independant. She played with Bumbo seat for a good 30 minutes by herself. I figured it was good excercise for her. She would seat herself in the correct position with her legs and feet out in front of her and then pull herself out of the seat by thrusting herself over the side and repeating the same movements back into a seating position again. Normally she would cry with frustration until someone would come to rescue her. Its these moments that I wonder to myself that YES one day we will look back and laugh at the trescherous road we call "Chiari" that we have traveled.

We hope everyone has a blessed evening!

May the sun shine all day long,
Everything go right and nothing go wrong.
May those you love bring love back to you
And may all the wishes you wish come true!

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Irish XOXOX

A friendship blossoming....

****TODAY MYLEE IS 19 MONTHS OLD****
Remember when you were a child how much fun it was to meet with your friends and share the day together.... your days were carefree and filled with laughter and joy. It is such a blessing to see my baby girl start to enjoy those moments too! Mylee had a playdate set with some of her friends at the zoo. We are scheduled for another later next week. Our baby girl is growing up....she isn't much of a baby anymore. And loves it when mommy says "you are so big...what a big girl you are"!

This week was filled with appointments, fun time at the zoo, and lots of playtime and special moments with mother and daughter. Mylee also loves it when her daddy comes home from work. I think Mylee is really starting to understand when being spoken to. We have been practicing retrieving items when being asked to get them and is starting to turn her head in the direction of what item you are speaking about. For example, Mylee notices when the garage door is being opened and when I say "I think your daddy is home", she turns her head toward the laundry door and starts to giggle! This is a huge milestone and I am very excited to share it with you and to her therapists!

Mylee also got a wonderful gift in the mail from a fellow chiarian! Mylee supports Miracle wish for Chiari and hopes to one day attend the camp that is being set up for children with chronic illnesses & disease related health conditions. Please visit this site for more details: http://www.miraclewishforchiari.com/

Next week starts with new therapist for Mylee. She will start physical therapy at a place in Carefree, Arizona. I hope she will do well at this new place. I am a little hestitant because she has made such great strides at St Joseph's and really likes her current therapies there. This will be a trial period and we have options to go back to St Joe's if we are not happy or satisfied. I will try to keep a positive note and stay optomistic!

xoxoxo

Birthday Party Fun....

Today has been an exciting day for Mylee. She must have known today was going to be a fun day, Mylee slept in until almost 8am! We played all morning until it was time to get ready for a friends 1st Birthday.

Mylee met Payge at St. Joseph's Hospital in January during her stay. Payge was Mylee's 1st roomate on the Peds floor. Mylee and Payge were able to play with one another all throughout each of there hospital stays. They have become great friends!!

We had a lot of fun at the party, please select play to view lots of pictures of the fun birthday party. We hope to see Payge again soon. Maybe at the zoo this upcoming week.

xoxox!

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Is it time to play yet??

Good morning,

Mylee was an early riser today, 6:00am! Poor baby was running low on energy before 9am. I heard an early naptime calling for sure! Our schedule is a little different today, therapy sessions are scheduled for this afternoon. Today we will see Dr K (Pediatric Rehabilitation Medicine, Physical Medicine & Rehabilitation). Dr K will also see Mylee outside of therapy sessions as a patient as well.
We went to Mylee's Pediatrician yesterday for a follow-up from her 18 month appointment and for a weight check. Mylee has actually lost 2 ounces in the past 3 weeks, however Dr D is not concerned at this point. We will also have another weight check with Mylee's GI specialist office. We will see the NP and Nutritionist to make sure Mylee's weight is good and to make sure Mylee is getting the right amount of caleries. In my honest opinion Mylee is proportioned perfectly. She has always been petite!
Mylee and I also ventured out to the park again yesterday, she absolutely loves being outside in the fresh air and watching other children laugh and play. We have a playdate set for next week to visit the zoo again. Our schedule next week for appointments are already booked up. Mylee is also scheduled for another Modified Barrium Swallow Study at the end of the month on March 31st. I am quite anxious to see if my little one is still aspirating. Please keep your fingers crossed for us. Mylee's Speech therapist is really anxious to start oral feedings again. I am a little anxious too.
Hugs for now....

Bathtime for the doggies

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Bathtime fun with Bobby and Max! They are silly doggies!!

Mylee had a really good time today at the park with her friends Emma & Elena. View the slideshow above and see the pictures, Mylee face tells it all!

Spring is in the air

Good morning,

Today is Tuesday and we get a day off today! Mylee is really starting to make more and more sounds everyday. She continues with her oral skills, we are using a technique (not sure what it is called) where you touch Mylee's cheeks or tap her mouth at each sound a word makes. For instance if you want to say "Hi", I will take my fingers and push Mylee's cheeks into a smiling position and repeat the word and gesture 2-3 times. Or for instance when I say "Mama" or "Papa", I tap her mouth twice while saying the word with her. I think she is starting to get the concept. I bought her a electronic "Dora the Explorer" toothbrush yesterday. At speech therapy they have all kinds of electronic types of oral tools they allow Mylee to put into her mouth. Her speech Therapist thought the motorized toothbrush would be great. Mylee is still trying to get used to it. She loves brushing those beautiful teeth she has though.

We are going to the park today for a play date. Zita and the girls will come over later this morning and we are planning to have a picnic at the park. It is beautiful right now in Arizona, today we have clear blue skies and it is suppose to reach 74 degrees. Simply perfect! The rest of the week is full of appointments for Mylee. Tomorrow is a big day, weight check and Dr. D's. I will update more when I can.