Friday, September 26, 2008

What a week.....

Friday is finally upon 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. 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!!!!!!


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"....


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!!


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:

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 . 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.


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:


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!!


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: . 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.