A Metabolic Journey ♥

Random thoughts...

2011-07-09T16:47:00.000-07:00

I have sat down many times in the past few weeks to update this blog and ended up having to put it away because my head was full of fog, much like it is at the moment but I decided to just start writing and I would re-read to see what I came up with before posting the written thoughts.

So here it is already midway through the summer and our Atlanta trip is now 1 day away. We leave very early on Monday morning. Mylee's appointment with Dr. K is on Wednesday. I am hopeful we have a smooth flight with our two little ones. So much has been going on it is sometimes difficult to figure out how to organize my thoughts let along all the medical information that seems to now be a daily task. Here are just a few items on the list of discussion points:

Seizures activity and unusual episodes

Extreme Fatiguing

Increase in Behaviors

CO2 Rentention

IVIG therapy

new brain changes; lesions, atrophy

Could these all the be the result of one major issue, like a seizure disorder or the result from the lack of wearing her Bi-PAP machine because of central sleep apnea. All results of a bigger picture which is progression of this ugly disease. We are hopeful we will get answers and perhaps helpful instructions as to how we better handle each day with Mylee. Our greatest goal and outlook for Mylee is to be able to have the best quality at life for her.

We have many procedures and upcoming appointments when we return from Atlanta too. Mylee is scheduled for a video EEG the first week in August. Our local children's hospital has just expanded and with the new improved wing to hospital more technology has been made available to children in our local area. We recently ran into some problems with having a procedure done here in Arizona and thought we would need to have a VER/ERG (retinal degeneration study) done in southern California. However, our local hospital is going to start doing these. We are in a holding pattern until this can be scheduled. Mylee will also pick out a manual wheelchair at the wheel-chair clinic the end of July.

It is too hot here in Arizona to play outside. I have become creative with ideas for the two girls to pass our time during these hot days. And I am thankful most days are consumed with therapies and appointments. In our downtime though we have had rock concerts, painted with passion and mastered our somersaults

School will be starting soon for the girls and we look forward to new chapters starting in each of their lives as they start a new school year.

As we continue in our journey, another little journey has ended. We are saddened by the passing of little princess Eithene. She graciously earned her angel wings yesterday morning. She fought an amazing battle. She will forever remain in our hearts. Mitochondrial disease awareness and the fight to find a cure has become a mission in my life. I ask you to join my mission and help bring a cure to this disease! ♥

xoxo

Finding a happy balance ♥

2011-06-21T09:53:00.000-07:00

Realities really seem to be a struggle lately and even writing those first few words really aren't accurate because the struggles have been on going for almost a year! It must be due to her outgrowing the baby years and into a child. Why am I having such a hard time with the reality of having a child with disabilities?! Is it my faith that I believe a miracle could happen? Is it the HOPE that one day she could be healed on this earth? Bottom line is that my child is disabled and cognitively severely delayed!! I need to find a happy balance not only for me, but for my family. It seems like I must have posted something similar to this in the recent past. Maybe it is because I feel like I am waking up on groundhog day everyday, same routines with the same appointments, week after week after week. Ugh, okay off my soapbox now...

We are gearing up for our Atlanta trip to our appointment with Mylee's geneticist. We still have a lot to prepare for. It is difficult traveling with someone who has more equipment and other items than most. For instance, we need to pack a single tent to enclose Mylee in at night since she is too big for a pack n play crib yet we need to keep her confined to a small space due to her being a fall risk. It really gives new meaning to packing everything including the kitchen sink! I will need to touch base with her geneticist office to make sure they have all new records from out last local admission and to find out if they have received her results from the spinal tap. Unfortunately, we will not have the results from a scheduled ERG/VER that we were hoping to have completed before our trip.

We had a little snag in our attempt to have a procedure done in a local hospital that we are not too familiar with. Currently, only one hospital in Arizona conducts this procedure for pediatric patients. An active investigation is being conducted on the technician who seemed to be under the influence of something. We stopped the procedure not only due to this unfortunate circumstance but because Mylee was also being very uncooperative and somewhat combative. We thought we were going to be transported to UCLA to have the procedure done under sedation, however our local Children's hospital will be able to conduct the procedure later in the summer. Mylee will also be scheduled for another VEEG. We are checking to see if she is having seizures. Mylee's disease seems to have progressed since her last MRI showing both continued progression of atrophy in her cerebellum and now delayed mylination in the cerebral hemispheres. This makes her more susceptible of having seizures. We are anxious to discuss these findings as well with her geneticist to see if she could help us better understand what is happening with Mylee.

Finding a happy balance in everyday life is difficult, finding a happy balance in our life is almost impossible! I have a child who wants to walk, who wants to eat, who tries to keep up with her little sister but struggles in every way, shape and form. It honestly is heartbreaking! So we do what we can and make the best of every situation. Mylee has been working on power chair training for about 3 months now and we have to the conclusion that we need to hold off with continuing training with her chair. We will discuss getting a manual chair for Mylee and use the manual chair for her independence. And hopefully in a year or two we can try again with the power chair. We have seen a lot of neurological changes in Mylee and we will remain HOPEful that she can overcome these obstacles that continue to be thrown in her direction. ♥

xoxo

Differences yet the SAME!! ♥

2011-06-07T08:34:00.000-07:00

I am always trying to remain positive because I have come to realize that if I put myself into the situation where I am constantly depressed and always looking at the cup that is half empty, well then I couldn't quite possibly be the best mommy I have promised to be to my two wonderful little princesses!! ♥

This year especially has been the most trying; Mylee is 4 (almost 5) and Khloe is 2 1/2 going on 15! I say the most difficult because it is the reality that Mylee has disabilities and it will constantly be a struggle to know that she may never be able to do the things every little girl experiences!! For her it seems to be a norm, I and even WE I think struggle with this daily!

The differences are clear cut; physically Mylee can not ambulate on her own! That means no dancing freely, no swimming on her own, not even doing the most simple things like walking or using the restroom on her own. And down the road; no bathing on her own, brushing her teeth on her own, or even playing on her own because of risks to falling, choking on objects she may place into her mouth, or the fact that she can't communicate with words and therefore someone would need to be with her at all times to meet her needs!

And yet we still honestly experience the SAME emotions HE has intended for us to have. The emotion of LOVE for one another and compassion when someone needs and extra cuddle or hug. The emotion of happiness and free spirit when I watch the girls play together, even when Khloe is happily giving her sister a helping hand. The joy of dancing together with music, even if Mylee has to use a piece of furniture to prop herself up. The joy in her face and the happiness I see from both girls is priceless. I have even been able to see recently the two of them playfully wrestling with one another on the floor; sometimes it gets a little rough and usually one ends up crying, but overall the friendship I see between the two of them is becoming stronger and stronger. ♥

I know we will always see Differences in our journey but I am confident the bond we continue to mold strong and firm will keep our family protected and our continued faith unbroken!

xoxo

Hope and peace

2011-06-03T13:22:00.000-07:00

I went to gymnastics this morning with my youngest daughter Khloe and enjoy being able to do things with her one on one! Normally we have the gym to ourselves but since school is out for the summer the gym is full with gymnastic camps! It is fun to see all the little future gymnast perform, in fact it's funny to watch Khloe mimic some of the big kids! It also tore at my heart strings too because it brought me back to reality that Mylee will probably never be able to enjoy those types of activities on her own... I did however meet with a very special lady at the gym who teaches special classes at the gym for kids will varying disabilities. The classes are private and therefore will cost double in price to what Khloe's class costs but we will rearrange our monthly finances in order to make this happen for our princess! Mylee will be a part of the gymnastics world and I can't wait to buy her her first leotard!

We have been going through quite a rough patch the past month or so. My lee's behaviors are all over the place and we believe we may have part of our solution with the current medication to stabilize her mood. I don't believe it is the answer to everything we are seeing but it has made a pretty good change for the better at least for the time being! We haven't really seen any significant episodes like we saw a few weeks ago. And as strange as this is a little disappointing it also makes us very concerned! You see it is quite possible what we saw was not seizures and instead a stroke-like episode. No one can really be sure and we have been told to just keep monitoring. We are to return to ER when something occurs or if we see the behaviors increase to the height the physician saw first hand in her office a few weeks ago when Mylee was admitted.

We finally received a date for an appointment to see a new neurologist at Children's hospital. We will meet with Dr. J on June 16th. We are anxious to meet with her because we are fearful Mylee may be at a new baseline but also because we have heard wonderful things about her. She may be able to help Mylee not only with her neurological piece but the new issues with behaviors and Mylee's sleep patterns and sleep apnea issues which all go hand in hand!

Mylee will also be seen by her opthomologist on Monday to check for decline in her vision. We have been noticing her crawling into the walls and into stationary objects which she hasn't done before. We aren't sure if this is vision related or processing related issues in which case may be progression in her disease. Either way it will show a progression in the disease. We aren't sure which to hope for.... Please keep Mylee in your prayers. I want her to be happy always and to be at peace. And as long as I can see this in my child, I remain hopeful and myself at peace!

Looking back in time way before my marriage I remember watching an Oprah episode and seeing a little boy by the name of Mattie.... He was so cute and brave... He left an instant imprint on my heart... I have always been interested in fundraising and community service and both my parents instilled this wonderful trait into my life. In fact, to this day I try to live my life with these same virtues. I can even remember watching MDA telethon on television every year... Not realizing that one day I too would be faced with a child who battles this horrible horrible disease!! Mattie was an amazing little boy, he had a heart of gold and a profound spirit to life... That spirit lives on today and everyday!! Mattie lost his battle to his disease at a young age.... His words of Hope and Peace are expressed in everything he touched... Including my heart so long ago!

From the mouth of someone special:

"Think gently, speak gently, live gently, and the world will be touched gently with the essence of your existence.".

Mattie J.T. Stepanek

Xoxo,

Mylee's mommy
"Never Give Up"

For the love of.... Barney!!

2011-06-01T07:41:00.000-07:00

For those who know him as the friendly purple dinosaur, in our home he is known as "bo bo" or "bar bor" or "bun bun"... it really just depends on how it comes out at that particular moment. We had ourselves a little meltdown right out of the chute because our little princess didn't wake in time to watch her beloved friend! You would think I could persuade her to watch another program that she would normally have no problem watching, for instance Elmo. Some of you know how much Mylee loves Elmo, however this morning it was all about Barney and nothing else. Note to self, please have 'daddy' DVR this program going forward! ♥

Our summer schedule for therapies has changed and for the most part the change is being handled by Mylee pretty well. She had a difficult time with her physical therapist on Monday, but I would consider these new changes still in a transitional period. I think Mylee should be settled by next week for sure! We are still waiting to hear from the neurologist office to schedule our follow-up since Mylee's last admission. Mylee has now been on the rispiradol for a full week and I can honestly say we are seeing a big difference in her overall behaviors. Our afternoons and evenings are much more enjoyable!

Hoping for a great day... and that our little princess can hold off on watching her favorite purple friend until tomorrow morning!!

xoxo

Summer breeze ♥

2011-05-29T15:34:00.000-07:00

It's funny how just a little summer breeze can send you into a complete chilly penguin. You would have thought we were at the pool this morning in 65 degree weather. It actually was 85, blue skies and perfect! All except for that cool summer breeze... It wasn't all so bad, especially if you stayed in the water.

I haven't updated in awhile, but trust me when I say I will have more time now that school has ended for the summer. Mylee has started aquatic therapy (is that what you call it) with her occupational therapist since hippotherapy has ended. Applejack (Mylee's horse) is on a summer break from the heat. The pool is great! However, it is a bitter sweet adventure each and every time Mylee gets near water. I think we escaped with only 3 choking instances today. And to our surprise, Mylee is breathing great!!

We will be kept busy this summer with therapies, continued preparation for Mylee to start Kindergarten and Khloe starting preschool. We only have one planned summer trip to Atlanta for a follow up visit to see Dr. Kendall (www.Virtualmdpractice.com). And most importantly getting Mylee stabilized with some current progression in her disease and back to baseline. I will try update you with the short version since most of the updates have been made via facebook and her caringbridge site.

A few weeks ago we thought we witnessed what possibly could be a myoclonic seizure. And then again a few days later another possible myoclonic seizure. A few days after the second incident Mylee was admitted by her pediatrician due to unknown neurological status. Mylee had an emergency MRI, EEG and spinal tap done. We really don't have any information other than the progression of her cerebellar atrophy seemed to be significant compared to the previous MRI done last December. She also has a new finding of delayed Mylination in her cerebral hemisphere bilaterally. The easy explanation is this could be due to her progression in her disease. We will hopefully find out more once all the results come back from Mylee's spinal tap.

Approximately 6 months ago, Mylee failed a hearing evaluation at school. We have been working with both an audiologist within her school district as well as another pediatric audiologist who works with Mylee's ENT. Mylee is now diagnosed with mild hearing loss. Mylee's hearing aids will be ready in about 3 weeks. I will update once she gets them, it will interesting to see how well she wears them.

Our little Khloe bug is growing into a interesting little character and she is keeping us very busy. Potting training has been a little challenging but we know we will eventually succeed with this milestone. We will also be kept busy this summer with her gymnastics and her love for swimming at the pool!

Until next time...

xoxo

Child's play....♥

2011-02-15T08:32:00.000-08:00

We enjoyed the beautiful weather yesterday and took the girls to the park... it was a suggestion by Mylee's physical therapist to meet at our local city park in our neighborhood. It was amazingly beautiful outside, I think the temperture was almost 80 degrees!

Mylee did great climbing the stairs to the playground equipment. She was quite proud of herself as she climbed up each play apparatus. She did very well sliding down the playground slide. We gradually introduced to her the sand beneath her feet. First she walked on it with her shoes on, then we sat her down in it with her shoes on, and eventually we were able to take her shoes and braces off to let her feet touch the sand. I am pleased to annouce she did GREAT!!! In fact, so well that she created angels in the sand (us desert folk make sand angels instead of snow angels!!).... ♥

xoxo

Bonded forever ♥

2011-02-09T11:33:00.000-08:00

Sisters

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at indentifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your heart and soul. You are ...compassionate beyond the expectations of this world. You are my "sister".

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's clinics, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left of the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith anyways. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in al they will accomplish as they pass through the world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

~Author Unknown.

xoxo,

Sara

A smile like no other...

2011-02-03T06:50:00.000-08:00

She is my teacher, she is my hero..... she is my daughter and has a smile like no other!! It always amazes me no matter how bad my day has gone, no matter how frustrated I am because I have dealt with tantrums, diapers explosions from an almost 5 year old, having to change bed sheets multiple times a week from a medical bed that when I see her smile.... all those frustrations melt away!!! I love it so much!! ♥

It is almost 8am this morning and I have decided to let my little princess sleep instead of waking her up for school. We may be in a mad dash to get ready when she decides to wake but for now she is my sleeping beauty!

I am interested to see how bloated she is today, she has slept long enough to get her entire overnight feed which consists of 600ml. She has been having this strange on and off again retention in her skin, mostly noticeable on her face and around her eyes. We are not quite sure what is causing this and it will be something we mention to her pediatrician when we see her next week.

Mylee's right lung again sounded bad the beginning of the week, but as of yesterday afternoon she was sounding more clear. This respiratory season has been very strange for Mylee. It has been great we haven't been in patient and her over all health has been great! However, she seems to have junk in her lungs that she is tolerating, which is great! The question now is how long can she tolerate this junk. And is it a virus causing this (slight temps) or is she aspirating and tolerating the aspiration?! Is it time for another modified barrium swallow test?

Mylee will have hippotherapy later this afternoon. I am excited to see more smiles from my precious little princess!!

xoxo,

Mylee's mommy ♥

The start of a New Year!!!

2011-02-01T09:14:00.000-08:00

I haven't updated in so long.... I am back in action and will update soon! We have started the year off perfectly - no inpatient stays for Mylee!!

Life is great at the moment!! ♥

xoxo

"Never Give Up"

A Child left behind...

2010-07-07T11:45:00.000-07:00

My heart has been heavy with concern and worry that my world seems consumed with finding a cure and bring awarness to Mylee disabilities and disease that I am forgetting about another little beauty in my life.... Khloe bug!

She is growing into such a beautiful little girl... so smart and funny!! How have I become so lucky to be a mother to these two... How do I stretch myself between these two amazing little people. And still have time to be the best wife possible!!?? Not to mention time to research, fundraise and more over have fun.... It is challenging and I am constantly questioning myself...

I am inpired many other mommy's out there... I know that I am not alone especially walking next to our Jesus Lord & Savior!! I am strong because of those who have surrounded us in prayer and lift us in spirit daily!!

I promise my little one, I will always try to be there for you even when it seems my mind is pre-occupied. You make us proud and are so special to us. Your big sister loves you and you have taught her so much!! We love you Khoe!!!

xoxo

A Champion!

2010-03-28T10:21:00.000-07:00

It is a beautiful Sunday morning, I sit here as my youngest naps and as I watch my oldest dance in her 'way' of course... she loves to play her demo music on the keyboard and dance away as if her feet and legs are weightless. I love to watch her flap her hands and arms to her own version of the rhythm of each song. And every so often a breeze will come rushing through our open windows and cause Mylee to shutter with excitement for the cool feeling on her face. Her expressions are priceless! I always wonder what her little thoughts are... like I said her expression tell it all... Despite the challenges she competes for each day - she will always be our champion!

We also fight each day for Mylee and continue our journey with her unknown metabolic diagnosis. It seems to be pointing towards a mitochondrial disease. We may never know for sure, but still encourage all of our friends and family to help us fight this battle! Help spread our words... learn about Mitochondrial disease... help us fight!

On Being a Champion

A Champion is a winner,
A hero...
Someone who never gives up
Even when the going gets rough.
A champion is a member of
A winning team...
Someone who overcomes challenges
Even when it requires creative solutions.
A champion is an optimist,
A hopeful spirit...
Someone who plays the game,
Even when the game is called life.
There can be a champion in each of us,
If we live as a winner,
If we live as a member of the team,
If we live with a hopeful spirit,
For Life.

By Mattie J.T. Stepanek

Mattie, lost his battle... but he never gave up! Mylee will NEVER GIVE UP... We will NEVER GIVE UP!!

Make an on-line slide show at www.OneTrueMedia.com

xoxo

Spring has arrived...

2010-03-21T14:36:00.000-07:00

Wow, it has been several weeks since I last posted. I apologize, it is becoming quite a challenge to post on both Mylee's caringbridge and our family blog. I promise to work on getting a little better...

We have been a very busy family since the start of the new year... Mylee has had ups and downs with respiratory infections and seems to be back at her baseline at this time. She continues to struggle a little bit with clearing her throat with congestion. This might be something we need to talk with her pulmonologist at our next visit. She has made it inpatient twice since the first of the year. She ended up in the PICU in January at Phoenix Children's hospital with RSV and pneumonia. And was just released from Denver Children's hospital after a surgical procedure for her muscle biopsy. This time her little lungs didn't want to work properly after she was in recovery from her surgery. We are now battling her 3rd infection with some type of staph. Again, on antibiotics... and awaiting what the CDC will say!

Now on to the good news... Spring is here! We have had a beautiful weekend in Arizona. We took the girls to the Phoenix Zoo yesterday and had a fantastic time! Hoping to make a few more trips like this before it starts to get too hot. We are also looking forward to a long weekend in Mexico for Easter. Enjoy these recent pictures of the girls!

xoxo

Footprints

2010-01-21T16:19:00.000-08:00

Two years ago this past week, Dave and I walked down the long white cold corridor of St. Joseph's hospital along with Mylee, her papa, and her Gigi to hand her over to the surgical team who performed her brain decompression. There are no words to express to you how we felt. Our little Mylee was such a happy and smilee little girl. I was so afraid she would wake up and be a different child. I was afraid her innocence would be stolen from her. I was afraid she wouldn't be her smilee self again. My fears were short lived...

Today, two years later we are still on this long road of unknowns and our journey continues. But, I am pleased to say that my child’s innocence were not stolen and she still shows us her beautiful smile almost daily! I cannot ask for anything more!!

Although we continue her fight today and we have new challenges that lay ahead for us, she continues to teach all of us the true meaning of life. Her "Never Give Up" attitude always seems to amaze us. She is such a fighter!!

I read this poem again this past week. It has always been dear to my heart and has even more of a special meaning to me that I would have never imagined. It has assured me to not be afraid of some of my recent fears. It allowed me to be true to my feelings. It reminded me that we are not on this journey alone. It confirmed that my faith can be renewed and it has!!

I hope you enjoy this poem as much as I have:

Footprints in the Sand

One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.
This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
“You promised me Lord,
that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand.Why, when I needed you most, have you not been there for me?”
The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”

Mary Stevenson, 1936

xoxo

Christmas 2009!

2009-12-28T20:38:00.000-08:00

It was an amazing weekend with Dave and the girls! Khloe's first Christmas was so special because we spent it with just the four of us - and the dogs!! We are all still fighting colds...it seems neverending!!

Here is a glimpse of our special moments this holiday season - Christmas 2009!!

Make a Smilebox slideshow

xoxox

Sisters

2009-12-07T14:17:00.000-08:00

Sisters are special

From young ones to old.

God gave me a sister

More precious than gold.

Make a Smilebox slideshow

Joy

2009-12-06T07:46:00.000-08:00

Wow - I can't believe how long it has been since I last updated our family blog. Actually a little embarassed, but better late than never! Mylee has been enjoying preschool and Khloe is growing up right before our eyes... We have traveled quite a bit and now will be home for the holidays.

Our trip to North Carolina, Victory Junction was a blast! It was so much fun to meet all of our Chiari families that we have been in contact with since our journey began. The camp itself is amazing and most of all Mylee was able to be herself and just have fun!

http://www.onetruemedia.com/shared?p=9ddfec82e02b64572cc777&skin_id=1011

Thankgiving was also a lot of fun. We were able to visit with friends we haven't seen in a couple of years. All of the kids played so nicely together. We had a holiday party with Santa on Saturday after Thanksgiving. Both Mylee and Khloe sat on Santa's lap...it was so cute!

We are homebound for Christmas this year. The tree is sparkling with beautiful lights and the stockings are hung with care - in hopes that St. Nick will soon be there.....

Mylee is doing well on the medical front. I mainly update her caringbridge page with our daily status. We are currently in the process of determining her new diagnosis. She is being tested for a Mitochondrial disease and will go in this week for testing at St. Joseph's hospital. We are in discussion of her having a muscle biopsy done and if so, we will need to decide if we have it done here in Arizona or travel to a more advanced hospital that specializes in Mitochondrial disorders. More than likely traveling to Cleveland, Ohio to see a doctor by the name of Dr. Cohen. We will keep everyone posted. Mylee's caringbridge site: www.caringbridge.org/visit/mylee.

I promise to update more often....until next time!

2nd Annual Miracle Race was a success!!

2009-11-08T13:06:00.001-08:00

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.

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Homework

2009-08-19T21:43:00.000-07:00

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!

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xoxox

1st Day of School

2009-08-17T12:45:00.000-07:00

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!!

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xoxox

Winter in July - Phoenix Zoo 2009

2009-07-19T06:22:00.000-07:00

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!!

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D-backs game - Thank you K Foundation!!

2009-07-18T17:32:00.000-07:00

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!

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xoxoxo

Happy 4th of July

2009-07-03T20:53:00.001-07:00

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!

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xoxoxo

Sisterly love

2009-06-27T07:11:00.000-07:00

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!

Sisters Forever 6/26/09

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:

http://www.victoryjunction.org/
http://www.miraclewishforchiari.com/

xoxox

Another trip to Denver

2009-04-23T15:36:00.001-07:00

We heard from Denver Children's hospital this morning. We should be getting the necessary paperwork sometime next week to get Mylee ready for the intensive feeding program. We have her scheduled for her modified barrium swallow study on May 28th in Denver. They are requiring her to have this procedure done there instead of here in Phoenix. We will then meet with the team of speech pathologist and therapist to discuss the intense program for Mylee the very next day on Friday, May 29th. We have already been told she wouldn't be enrolled into the program until probably the end of the summer or early fall due to an already existing waiting list. However, the hospital is willing to work with her current therapist here on a daily basis to get Mylee ready for the program. We were able to get Mylee's remaining blood work up completed this morning. It took a few days to be able to coordinate our local hospital here and Denver Children's to be able to get it completed, but we did it! Mylee is a trooper - again no tears. I think one of the nurses was so impressed she left and came back into the room with two new stuffed animals for Mylee.

Both girls are doing great and growing everyday. Mylee is getting so tall, we can always measure her growth by how far we have to put items towards the center of the dining room table. Pretty soon she is going to be able to reach from all directions. Khloe is 3 months old now, wow I can't believe it! She is so alert now and smiles almost instantly now when you look at her. They are both a delight and we look forward to our summer with them. The pool is almost ready too. Max and Bobby are enjoying the pool to themselves on most afternoons. Pretty soon we will be able to get the girls out there too!

xoxox

Hoppy Easter 2009!!

2009-04-18T09:57:00.000-07:00

We flew out to Colorado for Easter... it was great to be able to see family and friends. Mylee had a hard time on Easter Sunday with her sensory issues. It was quite stressful for mom and dad... we made it though! Attached are pictures from our weekend. WARNING: Lots of pictures!!

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We took Mylee to Denver Children's hospital for neuro appointments. It is an amazing hospital!! We started out on the second floor seeing a new neurosurgeon. We knew what he was going to say before he even said it! Mylee's initial decompression surgey was a success. She currently does not have any compression on the brain stem. He believes like everyone else that she may be experiencing some other neurological issue. Or it is quite possible the initial compression from her Chiari may have caused damage. If this is the case, we can only continue therapy and hope that she doesn't start to compress again.

Before our session ended with the neurosurgeon we requested Mylee be referred to Denver's intensive feeding therapy program. We needed her referral in order to even get into to seeing a speech pathologist or medical doctor. It was a long shot, but we thought we would ask to see if we could be seen that very same day. The staff at this hospital are amazing!! We headed to lunch and not more than an hour or so later, Dave received a phone call saying we had an appointment with Dr. M (head of the Rehav department).... He believes Mylee will be a great candidate. However, it will depend on the outcome of her next MBS (Modified Barrium Swallow Study)... this test is scheduled for May 20th. If the results are good enough to start any sort of feeding therapy we will be enrolled into the program. We could be in Denver for a few weeks of intensive feeding and then return home to work with her local therapist. This is all up in the air at the moment. We will know more once she
has her MBS.
After seeing Dr. M, we raced up to the fourth floor of the hospital to our scheduled appointment with a neurologist. This doctor was amazing and so was his nurse practitioner. They listened to all of our concerns. He agreed after realizing that she is now almost 17 months post decompression that we may be looking at another neurological disorder. He ordered Mylee to have some blood work done for metabolic and neuromuscular type of disorders. This is a baseline of test to determine which direction the doctor should go in. We won't have these results for several weeks.

Wow, it was a crazy last couple of days in Colorado. We made it home safely to AZ. And since we have been home the days have been just as busy. They are beautiful ones though, the weather here is amazing! Mylee jumped right back into her therapy routine. We also had a playdate with the twins on Thursday. Friday we met daddy at United Seating and Mobility. Mylee is being fitted for another walker. We have picked out two that we really like. We like the Snug Seat Crocodile Gait Trainer: www.snugseat.com and the Rifton Pacer Gait Trainer: www.rifton.com. We will have a final fitting with her physical therapist next week. I still can't believe Dave and I will be paying for this out of pocket. We thank GOD everyday that Dave has such a great job....!!

We are getting ready for Mylee's transition meeting at the school district next month. We will meet with the districts psychologist and Mylee's developmental specialist on May 14th. The first meeting with mostly be an introduction. We will find out which school she will be attending and a brief synopsis of where she is developmentally. The next meeting I believe will be mostly testing to see where she will be placed for sure. We are really excited!!

We are also getting ready to start planning Mylee's 2nd Annual Miracle Race for Mylee Grace. I am really excited to get started. We are hoping this will be an even bigger event than last year! I will have more details in the next few weeks. We will be donating to both ASAP and Miracle Wish for Chiari again. We will also be registering to go to camp in June. This will be Mylee's first camp experience. Miracle Wish for Chiari has provided an opportunity for 32 familes to join them at Victory Junction in November. Please visit: http://www.miraclewishforchiari.com!!

xoxox

A Special Day for Mylee

2009-03-28T14:18:00.000-07:00

We treated Mylee to Scottsdale train park today... A couple of groups locally here including Raising Special Kids sponsored a day at the train park. They had all sorts of fun activities planned for all the kids. Mylee played games at the carnival booths and won a prize every time! We attempted face painting but was reluctant to let them finish her lady bug, we ended up washing it off before it was finished. We think her favorite part of the morning was the petting zoo and riding "Oreo" the pony!

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Mylee is continuing to use her medical walker daily. She still needs constant attention when using the apparatus outside though. She had a little tumble on the way out to the parking lot when we left the park. Mylee now has a new "owie" on her left side of her face....it now matches the cut down her nose and the cut on her right outer lip (now healing) from where her tooth bit right through her cheek. We keep telling her we already know she is a warrior princess and that we don't need anymore battle wounds to prove it...... I am sure this won't be the last scar we will see!

Khloe is doing amazingly well! We call her our little chunky monkey!! I keep telling Dave that this must be what it is like to have a healthy child! She last weighed in at 10.5lbs at the doctors office a week and half ago. She sees her cardiologist on Wednesday and will have another EKG. We are confident the tiny hole in her heart has closed. The pediatrician advised that she could no longer hear it. Yahoo!! We have ourselves a 100 percent healthy baby!!!

We are also getting ready to travel to Colorado for Easter weekend. We have been fortunate enough to be able to schedule an appointment with a neurosurgeon at Denver Children's hospital. Dr. W has been interested in Mylee's case for approximately a year now. We have also sent him Mylee's current MRI scans and have updated him on her progression since her decompression surgery. As we all know she has not progressed much... some areas have improved slightly. He has also been updated with our concerns of where we feel she has regressed some. We are hopeful we will get some answers...

We will update more as we get the answers... .but for now please enjoy some new photos of our girls!

xoxo

Happy St. Patrick's Day!!

2009-03-17T15:05:00.000-07:00

The girls are growing up right before our eyes! Khloe is almost 2 months old and Mylee Grace is looking more and more like a little girl. Mylee has been fitted for some new AFO's, I can't believe how much she has grown. And Khloe has graduated from Newborn diapers and now is wearing size 1. We had fun this morning taking pictures in their St. Patty day shirts. The dogs even have four leaf clover bandanas on.

We are going to have a low key evening. We aren't making the traditional cornbeef and cabbage meal for the luck of the Irish. We will settle for some homemade hamburgers...

Mylee continues with therapy several times a week. We are scheduled this week for another sleep study and she has a neurosurgeon appointment on Friday with Dr. R at Barrows. We also have another neurosurgeon appointment set up for her at Denver Children's hospital in April. We will consult with this new doctor to see if he can give us any new information and possibly point us in a new direction to help our precious little angel. We haven't given up hope, but we are certainly starting to struggle with the idea that maybe we will have to cope with what our LORD has given us... I, however will never GIVE UP! Mylee deserves only the best and that means I will go into debt if I have to in order to give her whatever she needs!

Khloe is growing everyday. She has really started to smile more and even coo a little. She loves to be held and is almost sleeping through the night. She goes to bed around 10:30 or 11pm and will wake us around 5am to eat. Our new bundle or joy is now weighing 10.5 lbs and is in the 50 percentile. We have a cardiologist appointment set up for her on April 1st. She will have another EKG, however the pediatrician that we saw yesterday for her 6 week appointment says she didn't hear the murmur. This is great news for Dave and I. We were really looking forward to hearing that our new precious angel would have a clean bill of health!

Now that Khloe has had her 1st set of immunizations I think we will be planning our next trip to Mexico. We are looking forward to a little relaxation. It has been a crazy last couple of months. We had so much fun with our family from all of the country coming to visit with us. We have vacancy for the next several months and will enjoy our new family of 6 (dogs included). Our next adventure will be traveling with the girls to Colorado in April. I am sure I will have lots of stories to share.... stay tuned!

Gentle, Gentle....

2009-02-22T08:11:00.000-08:00

As most of you know, being a parent is very challenging....I wouldn't change it for the world though! Mylee has become quite the big helper... She loves to help mommmy feed Khloe (the times we feed her breastmilk from a bottle). She tries to help mommy place Khloe's blanket back on her and sometimes slipping because her feet don't quite stay in one place...ending in her tumbling to the floor and on the way down accidentally clobbering her little sister. It happened again this morning...poor baby Khloe she started to cry. Mylee of course is right back up wanting to give her baby sister a wonderful kiss. I believe these two are going to best friends. Mylee absolutely adores her little sister.
I am excited to announce that we have seen some progression in Mylee's development. I am convinced it is due to the arrival of Khloe... I should be more positive and say it is because of the hard work Dave and I put into each day with her. I guess that could be a little bit of it. And I definitly need to give credit to her therapist and now her nurse Shannon too. Mylee is still receiving therapies almost on a daily basis. Mylee has started to take a couple of steps at physical therapy, she is still very unbalanced and very ataxic...two steps is TWO STEPS!! She also has started to put together two signs (mommy and daddy are learning more sign language too)! Pending the status of her procedure tomorrow, her speech therapist is considering fitting her with a computer that would help her communicate even more!
Oh for those of you who don't know, when Mylee first met Khloe in the hospital she surprised us all with saying, "I WANT MY MOMMY!" Mind you she had not seen her mommy for a whole day...I think all the excitement and the fact that a new little person had arrived really got those brain signals working....we haven 't heard it since, but we are optomisitic that her words there waiting to come out!
Mylee's procedure is scheduled for 10am tomorrow morning at Children's hospital. This will be another outpatient surgery. I am not looking forward to having her put to sleep again but very anxious to see what her pulmonolgist and ENT find. Her ENT from her surgery last month diagnosed her with bilateral vocal cord paralysis. I think we are all a little confused as to why we hear sound coming from her mouth though. They will need to take a closer look at those vocal cords to make sure they are really dealing with the paralysis. We have been told about a couple of procedures that can help fix the issue, but of course it brings new risks to Mylee. Some being very risky to her airway in which could result in her being trached for period of time. I am not sure we are ready for something like that. We know it could eventually be her fate, but we are still not ready. So, the game plan is to take a look again. Both her pulmonologist and ENT along with both Mylee's speech pathologist will be there!
We have a transition meeting set up for May 14th with our local school district. Mylee will start developmental preschool in August when the school year starts. I will know more in May if Mylee will need to be fitted for a wheelchair for school or not. I will be talking to her pediatrician at Khloe's next appointment for a temporary handicap tag for parking until we know for sure if she will need a wheelchair. We will then ask for handicap plates. It is so interesting how our lives evolve the way they do. I never thought in my wildest dreams that I would have a disabled child. And even when I write these words, it still sounds strange.

We still try to manage to have a normal life too. In fact we are anxious for Khloe to get her first set of immunization shots so that we can go play down in Mexico. I think our first trip will be without the dogs.

xoxox

Family of Four!

2009-02-08T09:00:00.000-08:00

Our life is constantly evolving and changing right before our eyes... I never thought my heart could hold so much love and now it is overflowing with emotions that I couldn't possibly explain with words! I might be a little bias, but I have the most beautiful family!! I am loving it!! Please meet our newest addition, Little miss Khloe Elizabeth...

I have to confess though...I miss being pregnant! I never thought in my wildest dreams that I would have this emotion of sadness...I touch my tummy that is shrinking before my eyes and feel an almost empty feeling. I miss the kicking, the hiccups I felt daily, and the sudtle swishing motion that would wake me up at 4am! Don't get me wrong, I love my little one and the bond that we have already established! Khloe loves to snuggle in bed with me in the early morning hours or during the day when mommy needs to nap. We cannot get into this habit though, so we only snuggle for short periods of time.

Mylee is the best big sister...she loves to give baby Khloe kisses. It is funny though, she wants to hold her but once we have Khloe in her arms she is pushing her away. I think at this point it is a love/dislike relationship. Overall though, I think she loves her the most! This is going to be a fun sister bond to watch evolve overtime. I know the two of them are really going to teach each other so much!

We have had a very busy last week or so...Khloe's arrival seems like it was yesterday (She arrived at 07:56 am on January 28th, weighing 7lbs 5 ounces and 20 inches long)...and know that I think about it she is already 10 days old. Amazing how time flies!! We had a slight bump in the road on day 2 with her, it was the first visit with her pediatrician....he continued to listen to her chest and looked up at me with a look of concern...he told us that he heard what sounded like a heart murmur...he immediately told us that he didn't think it was going to be too much of a concern (Thank goodness)...he was going to see her first thing the next morning and if he continued to hear the murmur he would be referring us to a cardiologist. Long story short, Khloe had an echocardiogram and the results are pretty good. She does in fact have a ventricular septum defect (hole in heart), however the hole is small and away from the aorta valve. It will be monitored monthly. We have an appointment next month for a follow up and another EKG. Her cardiologist however does believe the hole will close on its own! We are so thankful to have a happy healthy baby girl!

We have kept Mylee on her normal day to day schedule. We figured this is probably the best way to keep her happy and not get so jealous. Daddy took her to therapy sessions...Nana and Papa took her for walks daily and to the park as often as possible. And Nana Pat had fun playing with her in her play room. We have also had a playdate with Mylee's friends to keep her busy! This week daddy, Grandma and Grandpa Eaton will hopefully take her to the zoo and to the Children's museum in Phoenix - Pending weather. Mylee also has her usual therapy sessions....it will be very busy!

Speaking of therapy, Mylee's speech pathologist mentioned to Dave that pending the outcome of her procedure that will take place on February 23rd, she is considering have a script written for Mylee to use a computer that will help her communicate better with us. The next procedure for Mylee will sort of be exploritory. Her pulmonolgist along with her ENT and both speech language pathologist will take a look at her vocal cords to determine and confirm whether or not she has bilateral of unilateral vocal cord paralysis. We are hopeful it is only unilateral. We are wanting to be able to make some corrections in this area in order for her to live a so called normal life. If the results come back that in fact she has bilateral vocal cord paralysis, we may have to put any corrections on the back burner for now. Therefore, she would continue on her feeding tube for an indefinite period of time. We remain hopeful!! NEVER GIVE UP!!

Mommy and daddy are doing pretty well considering we have started to become sleep deprived...We will post again soon.

xoxox

Go Cardinals!

2009-01-27T08:44:00.000-08:00

We have had an amazing last couple of weeks with our special little princess! We had a lot of fun last night painting my tummy and letting Mylee paint freely with washable paints. We always have to keep an eye on her though because she thinks everything goes into the mouth! Speaking of mouth, I made an appointment for her today to see the dentist for the first time. This is a special needs dentist and amazingly it is close to our home! It will be interesting to see how she does.....stay tuned!

The weekend before last we celebrated the win of the Arizona Cardinals as they became the NFC Champions and will be heading to the Superbowl! We are so proud of them!! We enjoyed staying home just the three of us (well 3 1/2 of us). We got a little goofy with the camera, but it was fun anyway!!

Our bags are packed...Mylee will stay at the Benjamin's tonight and Khloe will be born first thing in the morning!! We are all very excited! This post will be sort and sweet. I am hoping the pictures tell it all! We will post again real soon!!

div>

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xoxox

Time flies.....

2009-01-22T10:09:00.000-08:00

So much has happened in the past couple of weeks. Mylee is remarkable and did just fine through her surgery and recovery! We have a new possible diagnosis that goes along with her severe dysphagia. Her ENT believes she has what is called bilateral vocal cord paralysis. He told us he did see them move slightly but that they did not come together as they should when any foreign object gets into that area. Hence the reason she continues to aspirate.

So, the game plan at this moment is for her ENT, Pulmonologist and both speech pathologist that she sees will be conducting another surgery (more like procedure) called something like a video fluoroscopy. I think I have the wrong spelling, but basically they will be looking at her vocal cords more closely. She will have to be under general anaesthesia again, but will be able to be breathing on her own. This will allow for them to look at the cords in order to see them move more freely. We hope that we have a better understanding once we have this procedure completed.

Mylee's ENT was a little apprehensive to go forward with an immediate fix for this problem. And we appreciate his conservative approach! Their are a couple of options that was discussed with us. The first one being a procedure called a gel or foam injection. This material is similiar to botox and would be injected into the cords. However, this risk is that it could potentially cause airway obstruction therefore compromising her airway. She would then need a possible trach in order to breathe. The other procedure is called thyroplasty (permanent solution) and again the risk would be airway obstruction.

Although we are excited that we have some new information about what is causing some of the reasoning behind her dysphagia we are very concerned and need all of your prayers for guidance in order to make the correct decision going forward. We will be anxiuos to know what is found with the upcoming video fluoroscopy. We do not have this scheduled yet because we are waiting on the arrival of baby Khloe. Once we have more information we will post.

Go Arizona Cardinals!! We will be home from the hospital with our new addition just before Superbowl Sunday. We will hopefully have new pictures of the baby and big sister Mylee!

xoxoxo

New Surgery

2009-01-07T16:06:00.000-08:00

Mylee is scheduled for surgery early tomorrow morning. We will head to Children's hospital before sunrise in order to be there at 6am. Surgery is scheduled for 8am. Dr. R will place tubes in her ears and remove both her adnoids and tonsils. We are hopeful this will help with her speech and help control her sleep apnea. He is also wanting to look at her vocal cords to see if for some reason this could be causing her to aspirate. It is slim chance, but we are willing to have any and every doctor look to see if they can find the cause. If he does find an anomally, he has a procedure that he will perform on her. It is sort of like injecting botox into the skin, different material that he will inject into the area that is causing a gap at the vocal cord site. He did say it is a risky procedure, but that he feels it is necessary if this is what is causing her aspiration. We will be requesting constant updates before anything is performed during the surgery. I also have the films from when she had her last bronchoscopy that shows the vocal cords, so I will be asking for him to show us films of the site before he injects anything.

Mylee is our little warrior princess and we know she will pull through this surgery just like she has in the past. We are hopeful we will only be in the hospital until Friday, I will be sure to post updates as soon as I can.

We also had a little bit of a scare last Sunday morning. I started contracting around 4am, I monitored them in my head but started to worry because they seemed to get closer and closer together. I woke Dave up and had him start timing them, sure enough they were about 5 minutes apart. We called the doctor and she wanted us at the hospital for additional monitoring. The contractions ended up being irregular and timed between 4 and 6 minutes apart. I was given medication to stop the contractions and will be on them for the remainder of the pregnancy. We are 34 weeks today. Due to my placenta previa, Khloe Elizabeth will join our family on January 28th....the countdown begins!

xoxox

Christmas 2008

2008-12-26T15:31:00.000-08:00

Wow, another year comes to an end....Our 2008 year has been very challenging, but I believe has made a us a stronger family! Mylee continues to amaze us each waking moment. We have spent the past few days together as a family of three (almost four) and created memories we will cherish forever!

Mylee loved visiting with her Uncle Nicky, Aunt Sally and Grandma Trudy on Christmas Eve. We always have uncle Nicky over on Thursday nights and since Xmas landed on Thursday this year we decided to have him over on Wednesday. Mylee loves her Uncle Nicky.....We read her her Christmas story books and she was fast asleep by 8:30pm.....

Mylee slept in Christmas morning and awoke by 8am, she was bright eyed and bushy tailed and very excited to see what Santa had brought her....Mommy helped her with assistance walking down the hallway to see what had been left in front of the Christmas tree for her. Her favorite item this year is her baby doll changing station. She enjoyed playing with all the great gifts she received...she even like playing with the dogs new toys too. We eventually got her to play tug-a-war with the dogs, it was great fun to watch!

We invited one of Mylee's good friends over to have a playdate. It was fun to watch them with all the new toys. It is so great to have many good friends with children Mylee's age. Mylee needs to the social interaction and it seems to really help her on all levels. We are anxiously awaiting the arrival of Khloe Elizabeth. We only a few more weeks before our new bundle of joy graces us with her presence. We will enjoy every waking moment we have with Mylee as she is in for a big surprise when she has a new baby sister. We are scheduled for the new arrival on January 28th.

Here are some great pictures of Mylee, capturing the past few days of the 2008 holiday! Enjoy!!

Make a Smilebox scrapbook

xoxo

Another Mexico Vacation

2008-11-15T14:20:00.000-08:00

We made it through another fantastic trip down to our favorite home away from home! We had a blast with the Benjamin's, we hope to be able to travel south again real soon. We may need to wait until Khloe is born. Can you believe it, I am a little over 26 weeks now!?! I am being kept busy with Mylee's appointments and getting ready for our new addition to the family.

Mylee always has fun watching the Colts game with her daddy...we are trying to capture every happy moment with our warrior princess... she makes us laugh, cry, and smile it seems all at once! Mostly laugh and smile though.... She sure is a trooper... She underwent another sleep study last week and we are still trying to scrub the tape off of her head and neck from the EEG wires. Oh well, par for the course I guess! We also have another MRI scheduled this coming Wednesday at Children's Hospital. Our appointment with Mylee's neurosurgeon wasn't what we had hoped for. But then again, I am not sure exactly what we were hoping for! He is concerned that she has diminished muscle reflexes (lower extremeties) and that she seems to have gotten worse with her swallowing abilities. We have been referred to a new neurologist with hopes that this doctor can help Mylee. We will hopefully see him along with her current neurologist in December. I am hoping that the MRI will show that she has compressed again at her cerebellum and a surgery is all that is needed to fix my baby girl! We will for sure keep everyone posted on her status..... now back to the fun stuff!

Mexico was a blast! We spent a long 4 day weekend with our kids and dogs. The dogs had a blast running up and down the beach chasing the seagulls! And the water is still amazing, even for November! The kids had so much fun playing in the sand, looking for sea shells and of course pretending they were dogs too!

Hoping for a positive post after we get the results back from Mylee's MRI.... please keep that HOPE alive for us.... continue the prayers - Mylee needs them!

Here are some pictures from the beach, we hope you enjoy them as much as we have! More importantly, we hope that we are able to share these same moments with us in the near future!

Make an on-line slide show at www.OneTrueMedia.com

xoxox

Happy Halloween!!

2008-10-31T09:01:00.000-07:00

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: http://www.youtube.com/watch?v=hclOkIx8YCY

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!

Make a Smilebox scrapbook

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...

Make a Smilebox slideshow

xoxox

Pumpkin Patch 2008

2008-10-29T13:09:00.001-07:00

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!

xoxox

Happy Halloween 2008

2008-10-26T08:02:00.001-07:00

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!

Make a Smilebox slideshow

xoxox

Learning to walk....

2008-10-18T07:42:00.000-07:00

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!

xoxox

Mexico

2008-10-14T10:28:00.000-07:00

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.

Make a Smilebox scrapbook

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!

xoxoxo

Thought of the day...

2008-10-05T09:34:00.000-07:00

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.

by
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!

xoxox

Family fun day at the zoo....

2008-10-04T12:57:00.000-07:00

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.

Make a Smilebox slideshow

Never Give up!!!

2008-10-03T16:49:00.000-07:00

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!!

xoxoxo

What a week.....

2008-09-26T16:45:00.000-07:00

Friday is finally upon us....one more week of Vital Stimulation has come to a close! Today Mylee drank Pink Lemonade, thickened of course. She did pretty good, in fact her therapist mentioned she thought today was probably her best day. Mylee continues to sound congested, but seems to be coughing the junk up with more force!

We are scheduled for a Modified Barrium Swallow test next Friday morning, that means 3 more sessions of Vital Stimulation to continue her improvement before her big test! We need lots of prayers because if Mylee doesn't show any improvements and continues to aspirate during the MBS the Vital Stimulation therapy will be discontinued. We will have had 18 session by the time we have the MBS and if their isn't any improvement their is no need to continue.

We have a neurosurgeon appointment with a new neurosurgeon at Phoenix Children's Hospital on November 5th. At that time we will need to have more MRI's of Mylee's brain, neck and spine to see if her Chiari has caused more compression of her cerebellum. Mylee is currently experiencing symptoms including head pain, lack of balance (still not walking), dysphagia, and maybe even some numbness in her hands and fingers again. We are starting to wonder if her first surgery was a failed decompression. We won't know anything until we see the MRI results.

Dave and I are not convinced that her Chiari Diagnosis is what is causing all of these issues. In April (I think it was April) of this year Mylee had a full spine MRI done. It showed a small fatty tissue at the base of her lumbar spine. This is an indication of what is called Tethered Cord. We were told not to be concerned at that time because she was very young, not walking yet, and not potty trained. However, if not looked into and much further down the road and it becomes a more severe case - this Tethered cord could potentially paralyse her. Due to her still not walking, we will be looking at this more closely. She would need to go through a number of tests and possibly would need to see more specialist (story of our life, right!)....we just won't know until we see Dr. Manwaring. We will keep you updated!

Our Chiari Walk Across America was a huge success in Arizona and around the country. Country wide we raised 120,000 dollars to support Chiari Malformation. The state of Arizona alone raised 17,000 dollars! Way to go Arizona!! And thank you to all of you who supported Mylee and donated! I will post more information about new fundraisers as I hear about them. Mylee has also become a superstar, she is one of the faces for an organization that we have supported in the past. Please visit www. asap.org and check out her beautiful face! Click on About us for more details and a colored picture of Mylee!!

If you are also interested, Mylee's speech pathologist sent this to us to read. It is a dissertation on Chiari Malformation by Claire Miller, specifically one of Mylee's condition called Dysphagia. Click on: http://www.ohiolink .edu/etd/ send-pdf. cgi/MILLER% 20CLAIRE% 20KANE.pdf?

And finally to end our week....we received some wonderful news.......Dave, Mylee and I are proud to announce we will be exploding with joy when we welcome to the world in February a brand new baby sister for Mylee! That is right, we are having a GIRL!!!!!!

xoxox

Our little Diva....

2008-09-24T09:49:00.001-07:00

Mylee has always had such a great personality....she is starting to become her own! She is also mimicking everything mommy and daddy do, which I am sure that goes for everyone that she sees or meets....She has to put on her jewelry everyday, consists of her favorite bead necklaces....and she has recently started to carry what seems to be her favorite red purse - everywhere!!

The other night she was laying on her side on the tile floor with her head resting on her hand that was being propped up by her elbow and the other arm was resting on her leg. Dave and I both looked at each other because we couldn't figure out what she was doing...I think daddy was concerned she was trying to pose for a questionable magazine....After a while she could tell we were starting to laugh and giggle at what she was doing, so then of course she started getting silly. We finally figured out she was copying what I was doing while I was laying on the couch watching television....Monkey see, Monkey do!

Today I am 19 weeks pregnant, I have started getting more and more of my energy back. On the days we don't have therapy in the morning or therapy at all, Mylee and I go out for walks in the morning. It was beautiful outside today. However, I am looking forward to when it starts to get a little (okay a lot) cooler. We have our OB appointment tomorrow morning, it is the big ultra sound appointment. We will hopefully know (as long as baby cooperates) if we will be having a boy or girl!

Here is a great video of Mylee, I am able to get he to say "hi" and "Bye"....

Photo and video editing at www.OneTrueMedia.com

xoxox

Walk Across America - Cure CHIARI

2008-09-20T11:03:00.000-07:00

We had a wonderful time this morning with a lot of our family and friends. We walked in the Conquer Chiari - Walk Across America at the Desert Botanical Gardens in Phoenix. We were able to meet a lot of new Chiarian friends too, even someone from Henderson, Nevada. We hope it brought more awareness to our community and beyond. I believe 10 of our beautiful states participated this morning. We hope we can encourage all 50 for next year!

We arrived and signed ourselves in. In return, we recieved a goody bad filled with lots of fun items. The event was started with a former NFL kicker who originally was diagnosed with Epilepsy at a young age. He was told he would never be able to play contact sports because of his illness. He prevailed and played football in High School, and for Arizona State University. He went on to play in the NFL for the Denver Broncos, Seattle Seahawks, and Buffalo Bills. And throughout it all he battled his illnesses, including Chiari Malformation. He is currently in the process of going through his 29th surgery. If this wondeful soul could play in the NFL, then I know Mylee will prevail and grow up to be an active beautiful woman! Never give up!!

Here are some great photos of the events from this morning!!

Photo and video editing at www.OneTrueMedia.com

xoxox,

P.s. I am getting so big!!! I am almost 19 weeks pregnant!!

Conquer Chiari Walk Across America

2008-09-19T14:49:00.000-07:00

Today was day 11 for Mylee at Vital Stimulation therapy. She did very well and was able to drink 4 ounces from her bottle. Mylee also got to try some veggie chips, meltables so we didn't have to worry about aspirating solids. She did cough and sputter a little but overall had a great end to the week. We still aren't able to feed her at home, but are hopeful that we will get the homework sometime next week.

Tomorrow is the Conqueor Chiari Walk Across America. I belive about 10 states are participating and we are hoping to continue this walk each year. Some of the states including Arizona has been able to recieve a proclamation making September - Chiari & Syringomelia Awareness Month. We have several of our friends and family walking with us tomorrow. It is too late to register for the race via the internet, but pre-registration begins at 6am tomorrow morning at the Desert Botanical Gardens. The walk starts at 7am. For those of you out of state, if you are interested you can still sponsor a walker. We will be walking under Mylee Eaton. Please visit the website at: https://www.conquerchiari.org/walk/ccwaa_sponsor.

I also wanted to mention a Pediatric Chiari Gala taking place in Washington DC in October. Unfortunately due to our pregnancy and the numerous therapies Mylee is needing at this time, we are unable to attend. I encourage anyone of you near the Washington DC area to attend this Gala in Mylee's honor. We need to continue to get the awareness about Chiari out into our communities and to help find a cure! Please visit the http://www.conquerchiari.org/gala/Pediatric%20Chiari%20Gala.htm . Or email me if you have any questions.

Hope everyone is doing well and I will post a blog tomorrow afternoon with pictures from the walk.

xoxox

Day 8 of Vital Stimulation

2008-09-16T15:39:00.000-07:00

I am updating daily at Mylee's caringbridge site regarding Vital Stimulation if you want to view her daily activities. Yesterday's session was cancelled and so we picked back up today from a 3 day weekend. We took in a couple of Mylee's old Nuby sippy cups that we used when we were able to thicken her liquids. She was heartbroken when it was time to leave and we had to take it away from her. It broke our hearts too to have to see her having a meltdown. We will start another session tomorrow and will go the remainder of the week.

We questioned her therapist today as to when we can start to feed her or try to give her some foods at home. She wants to see Mylee not aspirate as much during her sessions before we start the at home therapy. We will hopefully know more by the end of the week. So far, we have skipped over crushed ice and honey consistancy and will continue to work on pudding thick for a while. Mylee was aspirating too much to show any improvement. We will hopefully move back to those consistancies at a later time.

For those of you who are not familiar with Vital Stimulation, please go to the link listed for Vital Stimulation on Mylee's blog or you can google Vital Stimulation. This process is usually performed on patients who have had a stroke but is becoming more and more of a process used for patients with severe dysphagia. It was most recently listed as one of the top 10 Ingenious Medical Treatments.

Here are some pictures of Mylee's treatments last week. A couple of the pictures shows her aspirating. Email me if you have any questions. We will continue to update as much as we can. And remember if you want a daily update, please visit her caringbridge site.

Click on the image to view the slideshow:

Make an on-line slide show at www.OneTrueMedia.com

xoxox

Update on Vital Stimulation

2008-09-10T18:41:00.001-07:00

Quick update: We are on day 6 of therapy, Mylee continues to aspirate. We are not going to give up though!! She had chocolate pudding for the first time today, it was priceless to see the reaction on her face. She continues to hold food in her mouth which liquifies the substance and when she swallows it aspirates into her lungs. We are hoping next week will be a better week for us. She has a break from vital stim tomorrow and then back at it on Friday.

We will update again soon. Please keep Mylee in your prayers....we need her eating and walking!!

xoxox

Vital Stimulation

2008-09-03T10:11:00.000-07:00

We have started Vital Stim! We never thought this time would come...Mylee started her first session yesterday at Children's Hospital in Phoenix. She is such a trooper!! We saw her pulmonologist in the morning and he said her lungs sounded good. We will be scheduled for another sleep study close to the end of her therapy session.

We met with Ms. Lindsey, speech pathologist. She explained the process to Dave and I and answered any questions or concerns that we may have. She is very good with Mylee and Mylee seems to really like her. Because Mylee is one of the younger patients, only 2 electrodes are placed on her neck. The neck is then taped and head gauze is wrapped around Mylee's head turning her into a mummy. She looks cute! The vital stimulation was only placed for about 17 minutes and Mylee tolerated the currents pretty well. Today will be a full 1 hour session. We will travel to Children's 4 times a week for 1 hour each time for 6 weeks. We have been told that by the 10th session, Mylee's therapist will know if she will be a success story. We are keeping our fingers crossed because we are not sure what our next plan of attack will be. Mylee is currently scheduled for 26 weeks, however it could be extended longer if needed. We will be keeping a daily journal of this new adventure and will be updating her blog and caringbridge site as much as possible.

Please keep Mylee in your prayers!! I would also like to mention the Chiari walk across America is approaching. I believe each walk in each state is scheduled for September 20th. I encourage you to visit: http://www.conquerchiari.org/walk/CCWalkAcrossAmerica.htm . If you state is particpating please join in the fun and walk to find a cure for Chiari!! Let me know if you have any questions.

xoxox

Carnival Party

2008-08-11T09:11:00.001-07:00

We are home from California, well rested again and back to our normal routines. Mylee had a lot of fun at Nana & Papa Heffelfinger's. Thank you again for hosting Mylee's Carnival Birthday party. We had a lot of fun visiting with relatives and friends. Mylee also got to spend a lot of time with her Auntie Sissy and Uncle Will. It was great to meet Will's girlfriend Monique.

We arrived in San Francisco on Thursday, our flight was great and Mylee was a perfect angel. She actually fell asleep before we took off from Arizona and slept most of the flight. The line was long getting the rental car, but it gave us the perfect opportunity to feed Mylee before we headed into the valley. We arrived in Stockton around 1pm in the aftneroon. We visited with Papa and Uncle Will for a little while and was able to get all of our stuff unpacked. Nana came home from work around 4pm. Later in the evening Auntie Sissy arrived and we spent the evening getting caught up and hanging out.

On Friday, we continued to get ready for the party. Lots of running around and shopping that needed to get done. We had a relaxing Friday night and was able to get to bed early so we could get up and get everything prepared. Thank you Auntie Sissy for staying up late and finishing the clown cut-out. You did a fantastic job!!

Saturday was a little crazy. We probably should have completed some of the tasks on Friday. But we all pulled together and was able to get everything done before the guests started to arrive. It is fun to have a big bash, but I think next time we will have a little more low key party. This will allow for more visiting. I think we all felt we didn't get a chance to visit with all of our guests. It was a lot of fun though! And we hope everyone else had just as much fun!

Make a Smilebox slideshow

We rested up on Sunday and flew back home on Monday afternoon. We had a great time in California and can't wait to see Nana & Papa, Auntie Sissy and Uncle Will again, hopefully soon!

Happy Sunday!

2008-07-27T07:34:00.000-07:00

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

2008-07-19T14:26:00.000-07:00

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!!!

2008-07-03T15:57:00.000-07:00

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

2008-06-26T09:15:00.000-07:00

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...

2008-06-17T20:42:00.000-07:00

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

2008-06-09T10:40:00.000-07:00

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!!

2008-05-29T17:08:00.000-07:00

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...

2008-05-28T12:57:00.000-07:00

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

2008-05-23T17:02:00.000-07:00

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....

2008-05-22T13:46:00.000-07:00

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.....

2008-05-20T11:37:00.001-07:00

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

2008-05-16T11:11:00.000-07:00

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!

2008-05-13T09:58:00.000-07:00

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...

2008-05-12T10:54:00.000-07:00

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."

*************************************************************************************

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!

2008-05-11T15:17:00.001-07:00

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...

2008-05-08T12:24:00.001-07:00

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....

2008-05-06T08:27:00.000-07:00

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...

2008-05-05T10:16:00.000-07:00

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....

2008-05-01T09:58:00.000-07:00

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

still not feeling well...

2008-04-30T10:44:00.001-07:00

Mylee is still under the weather today....Dave and I were up with her all night...I gave her an albuterol treatment around 1:30am and this seemed to help a little. I was afraid she was going to choke from her coughing as much as she was coughing....This morning she is worse...at first was very lethargic and would whine and cry when I walked away into another room...I gave her the max 3 dose back to back albuterol treatment this morning and she is still grunting and coughing...her tips of her fingers aren't blue though and neither are her lips...so her O2 stats should be somewhat in the safe zone....I called her Pediatrican's office and we have an appointment at 1:45pm...she is sleeping or at least quiet in her room right now, I will see how she does when she wakes up...we may end up heading back to the ER if she seems worse. No running of the nose, but she does have a slight fever, 100.5.

Please keep Mylee in your prayers as we need to kick this pneumonia before we wind up in the hospital. It has been 4 months since our last in-patient stay and I would like to make it a little longer of stretch before we see another hospital room!!

xoxox

Crazy weekend...

2008-04-28T08:51:00.000-07:00

Mylee is starting to feel better this morning....she was up very early and wanting to play! However, she is still running a pretty high fever, 102.1 at 8:05am...You can tell she was up early by the fact she is already laying down for her 1st nap!

Yesterday was a bit of a blurrrrr for all of us! However, Saturday we had a lot of fun with Uncle Troy and Grammy LaDonna....we went to Paradise Bakery for lunch and walked around our new shopping center at Norterra. We played at home for the afternoon and Uncle Troy jumped into the pool, he is the first to splash in the pool this year! We all went out to dinner at Pinnacle Peak Patio in Scottsdale. Mylee was entertained by the country band playing on stage and sat with a group of kids to watch her first magic show! We all had a great time....I think this is why we were all a little surprised with her being so sick on Sunday morning.

Make a scrapbook - it's easy!

The video attached is Mylee dancing to the country band on Saturday evening. We hope everyone has a Happy Monday!!

Make video montages at www.OneTrueMedia.com

xoxox

Another Aspiration Pneumonia

2008-04-27T11:17:00.000-07:00

Our fears are correct, Mylee has aspiration pnuemonia. However, I think we were able to catch it early. It looks like only a small right lobe infiltration. Mylee has been put on Zithromax for 3 days and we will go ahead and give her albuterol treatments consistantly. I will be giving her Pulmonologist a call here shortly to make sure he doesn't want Mylee treated with anything else.

We will keep you posted on how she is feeling later this afternoon!

xoxoxo

Running High Fever...

2008-04-27T07:39:00.000-07:00

Mylee is very sick today...she was up all night coughing...it sounds like pneumonia to me. She is running a 103 fever right now, however we have given her Motrin and an Albuterol breathing treatment!

We are going to see how she does in the next couple of hours or so...otherwise, we will head up to ER to have her looked at.

I will keep you posted on how she is doing...please keep her in your prayers....

xoxox

Results from Spine MRI

2008-04-24T17:50:00.000-07:00

Quick Update:

Mylee had her follow-up with Dr. R (Neurosurgeon) today, he says her spine looked great, no syrinx! Thank you GOD! Syringomelia is commonly known to be associated with Chiari Malformation and since Mylee had some issues with her CSF flow prior to her brain decompression, she will continuely be checked for this.

What is syringomyelia? (sear-IN-go-my-ELL-ya)
Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. SM may also adversely affect sweating, sexual function and bladder and bowel control.

However, we were also checking for Tethered Cord. It was noted in the results from the MRI that she has a small fatty tissue in her lower lumbar region of her spine. Dr. R mentioned something about a dimple or tail portion of her spine. He also said this wouldn't be something we needed to be concerned about at this time. Once Mylee is old enough to be potty trained and we start to see some incontinence issues or if she starts to complain about lower back pain for us to contact his office and an MRI of that specific region will be ordered. For now, we will continue to pray and hope that she will not be diagnosed with this. We will also follow up with Dr. R and our Neuro family for a yearly MRI to view Mylee's Chiari. Below is some information regarding Tethered Cord.

What is Tethered Cord Syndrome?

The spinal cord extends from the base of the brain through the boney spine to the lower back. Soon after conception, special cells come together to form a tube that will become your baby's spinal cord. If this tube does not completely close, the spinal cord can become tethered. The cord is said to be "tethered" when it is abnormally attached within the boney spine.
There are two ways the spinal cord can become tethered.
If your child was born with spina bifida (open spine) then the cord could become tethered because of the scar tissue that resulted from surgically closing the spine at birth. This scar tissue causes the cord to attach abnormally.
The spinal cord can also become tethered with spina bifida occulta. This can occur without visible outward signs although usually half the children have visible symptoms.
In both cases, the tube that forms the spine failed to completely close during pregnancy.This may not be a problem until the child develops symptoms. Normally the spinal cord is able to move freely when your child bends or stretches but when it is tethered, it is stretched, especially with those movements. This abnormal stretching puts tension on the cord that can cause permanent damage to the muscles and nerves that control the legs, feet, bowel and bladder. Early detection and treatment is important to prevent this from occurring.

Signs and symptoms:

Your child may have one or more of the following signs or symptoms:
Skin on the lower part of his/her back:
Fatty mass
Hairy patch or discoloration
Skin tags
Dimples
Bowel or bladder problems:
Changes in bowel control
Incomplete emptying of the bladder
Frequent urinary tract infections
Changes in bladder pressure as seen on special testing (called urodynamics)
Difficulty in toilet training younger children
Diaper may always be wet between diaper changes
Orthopedic problems:
Persistent back pain
Increasing curvature of the spine (scoliosis)
Loss of sensation in the legs or feet
Unequal changes in size of the legs or feet
Stumbling or walking changes
Weakness in legs or feet

Please continue to keep Mylee in your thoughts and prayers.....xoxox

Taking 2 more extra steps...

2008-04-24T08:54:00.001-07:00

Mylee had a wonderful evening last night....she helped daddy fix dinner in the kitchen...it was really cute! She must of understood a conversation Dave and I was having regarding her walking...Dave positioned her to walk to him and sure enough she took 2 more steps...watch the video below!

I got an email from a friend of ours here locally in Phoenix. She has some friends that own a race car track here in the valley and she would like to have a fundraiser in honor of Mylee and Chiari Awareness...It is in the early stages, but I believe this will take place sometime the end of June. I will keep everyone updated on the status of the event. We are looking for donations in Mylee's name and hope we get some pretty big sponsors... This is going to be great not only to raise money for Chiari but really to get the awareness out into the community.

We have an appointment today with Mylee's neurosurgeon. We will get the results back from her full spine MRI, please pray she does not have Tethered Cord or any Syrinx (fluid cysts in her spine)....My daughter is so amazing and beautiful! I am so proud of her!!

Photo and video editing at www.OneTrueMedia.com

xoxox

Special Quilt of love....

2008-04-23T17:26:00.000-07:00

Mylee has angels looking out for her...we have been blessed with a wide range of family, friends, and friends of friends and even strangers who have touched our lives in so many ways...words could never express our gratitude and appreciation we feel to you all!!

We would like to extend a special thanks to Jean Ilderton and our Angels at Quilt of love, especially Angel GrammyJ who help create Mylee's quilt of love and the special poem by Angel LadyGayle. We would also like to thank Angel Jane for the welcome banner.

Please view Mylee's quilt of love: http://www.quiltsoflove.com/quilt_2008/mylee_ge/mylee.html

Thanks so much!! xoxox

Another lazy day...

2008-04-23T12:51:00.000-07:00

Okay once again I am being lazy....this is the same information I posted on her caringbridge site:

Good afternoon,

I feel like a broken record, but Mylee is still very congested (gross, but she coughed a bunch of junk up this morning....and lovely too, she did this in the car on the way to therapy)... She was a showoff to her speech and physical therapists....They were very happy!! Mylee took a couple of steps for her physical therapist and said "Hi" (it sounds like "HA" - but we will take it) while she waved to her speech therapist!!

Our morning lasted longer than expected, but sometimes this will just happen...Mylee didn't get her 1st bolus until noon and she is finally laying down for her 1st nap of the day...she threw a little fit, but she is quiet now so I am hoping she is dreaming sweet dreams!!

We had a message on our answering maching from Children's Hospital Pulmonology. Mylee is scheduled for her bronchoscopy. However, it isn't scheduled until June 24th. We are a little conflicted because Mylee will hopefully be scheduled for vital stimulation therapy by then and if that is the case, her bronch may need to be pushed out further...or quite possibly she won't need one (the whole purpose for the bronch is to check to see if everything looks okay and to determine if anything can be seen that may be causing her aspiration) because we are hoping the vital stimulation will correct the problem...we will continue to wait patiently....

I am hoping for a restful afternoon...I am hoping everyone else has the same....

Remember the "spoon theory": http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

xoxox

Busy day today...

2008-04-22T17:35:00.000-07:00

I posted this same journal at Mylee's caringbridge site today...I am a little exhausted and want to just relax this evening:

I read the spoon theory today...I broke down in my office and cried...cried... and then cried some more. I haven't done this in a really long time....Fortunately, my husband was home and Mylee was taking a really good late afternoon nap...in fact, she is still sleeping.

We have had somewhat of a long day. Today was Mylee's Godmother's Dad's funeral. He was such a great man and he will be remembered for a really long time. He has a special spot in our hearts that will always remain...he too, earned his angel wings after battling cancer for a long time.

Mylee also had her developmental specialist at the house this afternoon after getting a late afternoon bolus feeding (Sorry honey! Mommy will be better at schedules tomorrow!) However, with as much interuption Mylee experienced in her schedule today she remained a princess!! My little girl is so well behaved!! I may be a little biased, but I think she is simply amazing - she seems to amaze me everyday....so, finally at 4:45pm this afternoon she zonked out for a nap (1st real nap of the day!)...

Back to the spoon theory...I received a special spoon pin to remind me to save a "spoon" for myself each day...and I have been holding onto this pin (honestly, I didn't know what it was and I didn't go to the website to check it out and I usually do!!)....so anyway, I read the "spoon theory" on another site and WHAM it hit me!! Moral of story....1st, please go to this website and check this out if you haven't already....2nd, remember someone else may have less spoons than you each day...and 3rd, for those of you who need it remember to save a "spoon" for yourself!

I too wish everyone out there an abundance of spoons!!

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

For those who are experiencing pain today....Mylee and I wish for you to be pain free tomorrow!!

xoxo

Mylee's new fish...named "Fishy"

2008-04-20T13:12:00.000-07:00

I have been meaning to write about Mylee's new fish we got for her a couple of weeks ago. I just remembered this afternoon when I went to feed him and Mylee decided to help...without coaching...she leaned down to give her "fishy" a kiss! It was the cutest thing!! She kisses everything these days....

Make a postcard - it's easy!

"Crash"

2008-04-20T11:23:00.000-07:00

Make a postcard - it's easy!

Lots of coughing....

2008-04-20T09:43:00.000-07:00

Mylee is still under the weather today....we could hear her coughing for most part of the night....fortunately, she was able to let her little body sleep in until 7:30am....we got up and let her watch her favorite program: THE WIGGLES, before heading out for a nice Sunday morning walk (about 3 miles)...we took the boys too! Bobby and Max (our dogs) love to go for walks!

Mylee is currently getting her first bolus of the day...As soon as I am done writing this journal entry I am going to get the albuterol out and give Mylee a breathing treatment....we haven't used albuterol in a really long time (almost 3 months)...that seems like a really long time to us! We have gone almost 4 months with no pneumonias and we want to keep it that way!!

I told Dave this morning if she continues to run a fever and sound as junky as she does that I will make an appointment with Dr. D (her pediatrician) early in the week. We have lots of appointments this week and will be visited by Grammy LaDonna and Uncle Troy next weekend. Uncle Troy has a conference he will attend first earlier this coming week and since he is here on the main islands (currently stationed in Hawaii) he is going to come to AZ to visit before flying back home to the islands...We are anxious to see them! And I hope Mylee is feeling better too!

Well, we have no plans today except to rest and get the remainder of the house picked up before the work week starts. I have several loads of laundry to finish and I need Dave to pick up the office. We will probably work a little in the backyard, continued preparations before the start of summer...It's really warming up - so we tend to work in the yard toward sunset when most of the yard is shaded!! We wish everyone a Happy SUNDAY!!

xoxox

2008-04-19T10:19:00.000-07:00

Mylee has been under the weather the past couple of days...She woke up yesterday morning sounding very congested!! Dave and I have decided to cut back on her "tastings" of any food. I think I will also have her speech therapist cut back too...We are really trying to keep Mylee out of the hospital as much as possible this year!

We have no plans this weekend, we will lay low in hopes to clear up Mylee's congestion. We hope we won't have to get the albuterol out....she really sounds horrible throughout the night and has started her "stridor" or "snoring" again!

We will see Dr. R (neurosurgeon) on Friday and Dr. P (opthomologist) on Thursday...and therapist all throughout the week...We have started noticing Mylee crossing her right eye again... a little disappointing, but we were told her eye surgery may not be the only surgery she will need...We will question Dr. P this week... Mylee is also still experiencing what we have been told are "night terrors", we only had one episode this week (thank goodness) but they have become very frightening for myself....she will wake up from her afternoon naps in absolute hysterics...she is inconsolable for about 30-45 minutes and because she is fighting to be put down - I will gently set her down (in crib or on the floor) her eyes are squeezed shut and she looks as if she is in a stat of confusion because she will crawl into a wall (or if she is in her crib, she will bang her head into the side of crib)....we will discuss this again with Dr. R - we hope it is just side effects from the brain decompression....I will keep you informed!

On a lighter note - Dave said she took another 1/2 step this morning when he was working with her on walking....Still very wobbly and unbalanced, but we continue to work on this!! We hope everyone has a wonderful weekend!!

xoxox

My First Steps....

2008-04-17T08:45:00.000-07:00

We have almost reached a very important milestone in Mylee's life! Last night she started to take her first steps at walking...We have been working with her constantly to strengthen her muscle tone. We have a little further to go, but I do believe our little princess is going to be walking very soon! Dave and I are ecstatic and it brought tears to our eyes last night to see her so proud of herself! She continued to pull herself up several time (tried this for 20-30minutes) and finally gave in for the evening. (stay tuned, I am sure we will be taking more video in the next view days to weeks with our little one!)

First Steps

These are the tiny feet that carried you that day.
First steps from my hands, I watched my baby step away.
During the coming years, I'll guide these tiny feet,
As they toddle 'cross the lawn, and safely cross the street.

They'll soon grow strong and steady, find puddles to kick and splash,
Pedal a two-wheel bike and win a school yard dash.
Kick a ball learn to dance, race a friend home from school,
Skip rope, jump in bed and dive feet first at the pool.

Your small feet may often stumble, scrape a knee or take a fall,
Misstep or need direction, or a model to stand tall.
Know I'll always be behind you, my love will give you wings,
To proudly fill the shoes, a grown-up life will bring.

The years will quickly pass, and these feet will learn to drive,
Walk the stage to a diploma, when graduation day arrives,
I'll watch through misty eyes, as you walk down wedding's aisle,
A family of your own, you'll start your journey with a smile.

Your tiny steps will hold our heart forever, for each tomorrow you will grow.
Today we'll hold you closer, for too soon these feet will go.

By
Teri Harrison

Photo and video editing at www.OneTrueMedia.com

She collapsed on he floor in the kitchen with Papa Spray to sit with her newly found glow worm (mommy & papa Spray worked in the garages yesterday - Mommy found some of Mylee's older toys we had put away) She loves her glow worm baby Uncle Nicky bought for her! Please view the attached videos and share our happiness with us! Thank you again for all your love and support, we continue to ask for all of your prayers as Mylee continues to work towards her goals and accomplish her milestones!

xoxoxo

lazy days...

2008-04-16T15:51:00.001-07:00

Happy Wednesday everyone! We had a terrific day today at therapy...Mylee is doing very well and always enjoys going to see her therapist as an outpatient at St. Joseph's Hospital in Phoenix. We are surely going to miss them when we are scheduled with out new in home therapists. I don't expect we will have all three therapies in home until the end of summer. Mylee will still be able to see her friends at rehab!!

We enjoyed Grandma and Grandpa Eaton while they were here and look forward to the next visit, hopefully in August for Mylee's 2nd Birthday. Mylee will have two birthdays this year...one in California and one here at home in AZ. We are also fortunate to have a visit from Papa Spray...he has been a lot of fun the past couple of days, this will be a short visit though...he is leaving in the morning. We will see both Papa Spray and Nana Cindy in Colorado in just a couple of weeks. Dave and I are really looking forward to this trip because we will stay a night in Denver (without the kiddo), this will be kind of a celebration of our anniversary and a well deserved night off!!

Mylee continues to amaze Dave and I. She has become quite the little princess....already talking back to Mom and Dad when she is disciplined (Dave and I can hardly stop laughing when she shakes her fingers back at us)...We are certaintly blessed!!

xoxoxo

More bumps & bruises....

2008-04-14T17:17:00.000-07:00

Mylee had a very busy morning...we had two therapy sessions bright and early today. This was her first visit back with her physical therapist in several weeks due to the transition back to St. Joseph's. Mylee did very well and I can tell she really loves her therapist! We did a lot of walking with the grocery cart at therapy, her physical therapist has great hope that Mylee could be walking by her 2nd Birthday! I pray everyday!! I am also really hoping we can eat by then too...I can't imagine not being able to have birthday cake on your birthday!!

We also met a speech therapist from Children's Hospital who is one of the therapist to adminster the vital stimulation that Mylee needs. She said Mylee had a beautiful name it sounded familiar to her...I am really hoping since we were introduced to her that she will go back to her office and help speed up our case. We are currently on a waiting list. It makes me really sad to know so many children have aspiration and dysphagia issues....This whole journey in this portion of our life has really opened our eyes to those many people (mainly children) who suffer daily with rare illnesses & diseases no one should ever have to experience! If you are interested browse through Mylee's caringbridge site and read some stories of other children (and families of those children) who have signed Mylee's guestbook. These children are amazing and the bravest souls I have ever met! Mylee is one of many, many children who suffer daily.... despite not being able to eat each day, walk upright, communicate with her voice, and constant falling due to being unbalanced... our sweet baby continues to fight and live pain free with a smile on her face... She is our hero!!

We also a bit of a scare this afternoon with Mylee's feeding tube. We noticed it was a little loose so we checked the level in the balloon, sure enough it was only filled to 1ML of water - it should be around 5 or 6ML. Dave helped me fill it back up this morning and we went off on our way to therapy. Well I noticed it was a little loose again when we got home while I was changing Mylee's diaper. I went ahead and checked the levels (mind you I am by myself during the day) and sure enough it was back down to 1ML again! I called her surgeons office and spoke with a medical assistant who told me Mylee probably had a slow leak...she guided me through changing out the Mickey button...I was really nervous because I am by myself...I sucked it up and changed it without problems...Mylee is sure a trooper!

xoxo

Ponytail days...

2008-04-11T15:47:00.000-07:00

Happy Friday!!

Lots of sunshine in sunny Arizona! It has been wonderful having Grandma and Granpda Eaton visiting with us this week. They will stay with us through the weekend and return home to Indiana on Monday. We have tenatative plans to check out the train in Anthem with Mylee tomorrow, I think this will be fun. We will bring bread crumbs for the ducks at the pond too!

Mylee was visiting by her developmental specialist this morning, we had fun working on blowing the feather out of a straw. We will also be working with Mylee to get her to blow bubbles with a straw in a bowl of water or using the straw in the bathtub to also blow bubbles. This will help strengthen Mylee cheeks. We have started noticing that Mylee isn't interested in putting things in her mouth as much as she used to - we need to keep her interested with oral development as much as possible so when she does get the green light to eat again it won't be such a difficult transition. Mylee's speech therapist at St. Joseph's has been working with her on these skills too, this week we worked with different flavored sugars and let her dip some of her toys in water and then into the sugar. It was a lot of fun and very messy! I think I am going to buys some Easter Peeps and licorice and leave them out so they actually become stail (we want them very hard) so Mylee can work on her sucking sensations, this is also very good for oral development. We were also given lots of additional handouts this week. We are going to start working with Mylee on more sign language skills to help us understand her better.

New things this week:

Mylee has learned how to dial: 9-1-1 - much to our surprise, Mylee dialed 9-1-1. We thought she was just playing with the phone. We heard lots of long beeps from numbers being pushed. Dave decided to take a look at the phone and sure enough Mylee dialed, 9-1-1-7-5-5....oops! A few seconds later, ring...ring...ring. Dave answered the phone and it was Phoenix Police asking us if everything was okay.... Dave answered, Yes Ma'am - our 1 year old was playing with the phone! Mylee only gets to play with her pretend phones now!!!

Mylee is not walking, however she has become quite the climber....We purchased a cushion chair for Mylee at Christmas time and she loves to sit and read her books in the chair. She has learned to stand up in the chair. Dave caught her standing in the chair one night this past week and took his pointer finger to shake at her while saying "Mylee, sit down!"...well, Mylee decided she had had enough of being told what to do....she looked up at daddy and took her finger and shook it back at him with confidence and said, "dhat dhon"....anyone have any suggestions how not to laugh or smile when your toddler makes these gestures when you are trying to discipline them??? This was quite the kodak moment and I wish I had had the camera!!

Mylee has also started to push herself up from a crawling position into a standing position, she has done this a couple of times for about 30 seconds or more....this is very exciting!! We are still working on muscle stregthening, but I believe we are getting closer at her walking.....stay tuned!

Wildlife Zoo visit...

2008-04-09T16:31:00.000-07:00

Today was a fun day...we went to the Wildlife Zoo with Gina (Mylee's cousin from Minnesota). We had a terrific time visiting with Uncle Gene, Aunt Nancy, Aunt Susie, Cousin RoAnna & Gina too! Grandma and Grandpa Eaton also joined in the fun, we saw Giraffes, Lions, Tigers, and even baby Tigers!!

Mylee is always good and even took a tumble into the dirt a couple of times. We brushed off the dirt and on we went to see more animals! We will post more later this week. Enjoy the slideshow!

Make a slideshow - it's easy!

She is simply amazing...

2008-04-08T16:28:00.000-07:00

Today is Tuesday and a very ordinary day...The sun is shining in our corner of the world in sunny Arizona. I really don't think we could ask for a more beautiful day. Mylee woke up this morning like any ordinary weekday morning. Only this time, Grandma and Grandpa Eaton were here to share this beautiful morning. It is great to have them here under the circumstances...Mylee's Great Uncle Kenny earned his angel wings on Sunday. We join together as family and celebrate the life he lived on Thursday when he is laid to rest.

I have had the windows open all day, a nice cool breeze has been blowing throughout the house. It has made for some really great sleeping, Mylee slept for almost 3 hours this morning and she is currently taking another nap. We played outside in the sandbox with Grandpa Eaton for a little bit this afternoon and rolled the ball around in the grass too. Daddy has really been taking good care of the grass in the backyard which has made for great play area for Mylee. We need to take advantage of it now while it is still really nice out, before too long we will start to survive the desert heat! Mylee is preparing herself - she has been wearing her sunglasses all day....even inside!

Tomorrow we are back on schedule for therapy, she has speech and occupational therapy. We received a phone call today to start in home occupational therapy and will wait to hear from the actual therapist who has been assigned Mylee's case. We will probably start with this therapist mid May. It will be really nice when we have all the therapist coming out to the house. We are saddened though to leave the therapist at St Joseph's, they have become great friends too!

xoxox

It's all about the Wiggles......

2008-04-05T20:02:00.000-07:00

We went to our 1st Wiggles Live show at the Phoenix Coyote stadium this evening (jobing.com arena)! Oh my goodness, what a great time!! We were a little concerned about Mylee and how she would react to all the noise, music, and fans - but much to our amazement our precious angel rocked the house and grooved to the Wiggles music!! Below is a collage of pictures and a video to boot! I think we have a little dancer in our future... We look forward to many more years of The Wiggles shows...Mylee had a blast!!!

Watch Mylee dance at the Wiggles:

Mylee at "The Wiggles" - 4/5/08

Make a slideshow - it's easy!

Happy Friday!

2008-04-04T14:14:00.000-07:00

Mylee is home from St. Joseph's and resting peacefully. She did wonderfully this morning coming out of general anaesthesia. We believe her full spine MRI will be just fine. Dr. R, Mylee's nuerusurgeon will contact us next week if he sees anything urgent. Otherwise we have an appointment with him on April 24th. Mylee has put up with an aweful lot this year and continues to smile through it all! She is so amazing!!!

I am looking forward to this weekend, we are taking Mylee to see "The Wiggles" Live tomorrow evening! I want to make this weekend all about Mylee!! We really shouldn't spoil her as much as we do, but we have learned that life really is too short and why not! So, I will be spoiling her as much as I can!!

I will update as the weekend progresses and we will take lots of pictures of tomorrow night! Have a great Friday!!

xoxo

Precious moments...

2008-04-03T10:28:00.000-07:00

Today is Thursday, April 3rd, 2008! It is absolutely gorgious outside, blue skies and not a cloud in the sky. I have the windows open and the birds are churping! Mylee is becoming our little girl, she is no longer a little baby. She has her own baby now! She received this baby at Christmas time and just recently has really started to understand how to take care of it. It is the cutest thing to watch! Mylee pats her baby when she cries, holds her baby when the baby needs to go "night night", covers the baby with her blanket, and just this morning I surprised Mylee with the baby's stroller. Mylee immediately took the baby for a walk and of course had to take her shopping! Mylee is learning new things everyday and we are constantly trying to encourage her to talk, sounding out each word so she sees what the word sounds like. We continue to orally stimulate those muscles in her mouth by using toothbrushes, electric toothbrushes and oral gumming tools provided to us by her speech therapist. I practiced saying "baby" with her this morning and I think she is getting the idea. She made the "B" sound and was able to come up with "Ba", close enough for me for now! She is our amazing child and constantly surprises us everyday with improvements! I/We are so proud of her! Here are some more pictures of her taking care of her baby. See her video too. Mylee is such a good "mommy" to her baby, she loves to give her kisses and tuck her in with the babies blankets! Our little girl is growing up!!

Mylee and her baby video....

Springtime 2008

2008-04-02T18:27:00.000-07:00

Make a photobook - it's easy!

Mylee had a great time this afternoon playing outside in the sunshine with the doggies. Max and Bobby are so good with her. It was beautiful today in Arizona, lots of sunshine with a slight breeze here and there! I think we could get used to these low 80's degree weather we have been having. We can feel the blossoms blooming though, waking up in the morning is a bear with our stuffy noses - but well worth it if you ask me!

We are watering our plants a little more these days, hopefully we will have some April showers this month before the real heat approaches the desert. We are looking forward to a fun weekend with the "Wiggles" Live show. We got a call this morning from Uncle Gene in Surprise and it sounds like Gina & RoAnna are flying out from Minnesota to visit. Mylee hasn't seen Gina since she was 8 months old, it will be fun reuniting these two and taking lots of pictures of course!

We went back to speech therapy today, Mylee was so excited to see Miss Nicole! Poor thing cried when we left. I made up for it though and we went to visit daddy at work! The girls in his office really love it when Mylee comes by to visit. We are off the hook with therapies tomororw, it's a good thing because Mylee has her MRI on Friday.

xoxox

A bit of sadness & disappointment

2008-04-01T12:05:00.000-07:00

Mylee failed her Modified Barrium Swallow test yesterday. We are proud of who she is nonetheless! Her smile alone is perfect! We will now wait for Children's Hospital to give us a call to schedule a new therapy for Mylee called Vital Stimulation. We have been told she will in fact aspirate fluids and food during therapy sessions. It will be an everyday therapy session for 5 straight weeks, very intense but something that is needed! Please pray for us that we will have no illnesses during the sessions. I will keep you posted as to when we will start this process.

Mylee had her first visit today with Miss Lisa, this is her developmental specialist who will oversee all of Mylee's therapies with OT, PT & Speech. Todays visit was mostly paperwork (yes, more paperwork!). We are scheduled again with her next week. We will see Miss Lisa once a week for an hour. We also went ahead and rescheduled Mylee's PT & OT back at St. Joseph's, the other location in Carefree was too much for us right now. Plus, they are submitting the sessions to our insurance instead of using DDD. We figured we will go ahead and use outpatient rehabilitation at St. Joseph's until we run out of sessions, then we will utilize DDD and set up sessions at the rehab place in Carefree.

I put together a montage to express her story with picture, words and music. Fortunately, I had a little help with another website I found. I used some of her inspirational words, I hope she doesn't mind. If you are interested check it out - it is located in the right hand corner of this website. Thanks again to everyone for being so supportive of Dave and I. We love you all!!

xoxox

Needing prayers!

2008-03-31T17:23:00.000-07:00

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!

2008-03-30T14:02:00.000-07:00

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.

Make a scrapbook - it's easy!

"Wiggles" time....

2008-03-27T10:46:00.001-07:00

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

2008-03-26T09:30:00.000-07:00

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!

Make a slideshow - it's easy!

Hugs,
Sara & Mylee

2008-03-23T07:40:00.000-07:00

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!

2008-03-22T10:10:00.000-07:00

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