Christmas 2009!

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!!

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xoxox

Sisters

Sisters are special

From young ones to old.

God gave me a sister

More precious than gold.

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Joy

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!

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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!!

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

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

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

A Special Day for Mylee

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!!

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....

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!

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!

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!!


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xoxox

Time flies.....

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

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