Friday, December 26, 2008

Christmas 2008

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!!

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xoxo

Saturday, November 15, 2008

Another Mexico Vacation

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!



xoxox







Friday, October 31, 2008

Happy Halloween!!

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



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


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

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xoxox

Wednesday, October 29, 2008

Pumpkin Patch 2008

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

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


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


I hope to post new pictures later in the week!


xoxox

Sunday, October 26, 2008

Happy Halloween 2008

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

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

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xoxox

Saturday, October 18, 2008

Learning to walk....

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

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

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

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

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



Tuesday, October 14, 2008

Mexico

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!

video

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

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

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




xoxoxo

Sunday, October 5, 2008

Thought of the day...

Someone I love

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


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

Saturday, October 4, 2008

Family fun day at the zoo....

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

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Friday, October 3, 2008

Never Give up!!!

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

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

xoxoxo

Friday, September 26, 2008

What a week.....

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

Wednesday, September 24, 2008

Our little Diva....

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"....





xoxox

Saturday, September 20, 2008

Walk Across America - Cure CHIARI

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!!





xoxox,

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

Friday, September 19, 2008

Conquer Chiari Walk Across America

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

Tuesday, September 16, 2008

Day 8 of Vital Stimulation

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:


xoxox

Wednesday, September 10, 2008

Update on Vital Stimulation

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

Wednesday, September 3, 2008

Vital Stimulation

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

Monday, August 11, 2008

Carnival Party

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!
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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!


Sunday, July 27, 2008

Happy Sunday!

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

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


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

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


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

xoxox
















Saturday, July 19, 2008

July Update

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

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

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

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

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

xoxox

Thursday, July 3, 2008

GO D-Backs!!!

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

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

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

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xoxox

Thursday, June 26, 2008

Quick Update

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

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

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

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

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

xoxoxo

Tuesday, June 17, 2008

Friendships...

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



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

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

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

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

xoxo






Monday, June 9, 2008

First weekend of June

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

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


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

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


Have a fantastic week and we will post again soon!


Lots of love,
Eaton family