1st Day of School

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

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!!

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

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

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

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!!

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