Monday, April 30, 2012

An aggressive move for Emmett's care

Emmett went into Phoenix Children's for a routine out patient surgery , an esophagus dilation, today. Emmett's esophagus has been repaired in different area's multiple times. It is incredible what Dr Egan and his partner's have been able to do in saving Emmett's life and trying to preserve the original esophagus. We are hoping that it will continue to work, however we have had the discussion of possible complete Reconstruction. The plan for now, it to give his body time to heal.

The location's where the esophagus was repaired, scar tissue has built up, forming strictures. Dr Egan and also Dr McComber have been carefully working on stretching the strictures every 3 weeks for over a year now. The dilation procedure is not like most, Emmett's esophagus tissue is still very weak and fragile. To dilate, process must be done carefully, to prevent tears .
The dilation's however, is not proving to show much improvement as we hoped. Dr Egan and Dr McComber are constantly doing research on how to improve the issue.

This is an image of the esophagus and stomach. However Emmett's stomach does not look like this. It has been surgically altered to repair the esophagus and prevent reflex. Emmett has multiple complicated area's in his esophagus. The red dot is the most concerning area.

These are images of Emmett's esophagus. Notice the picture on the lower right, the opening is nearly closed off. That is the what Emmett's esophagus looked like this morning before the dilation. The image on the bottom left is what it looks like after the dilation. In 3 weeks, the esophagus will be once again be a narrow opening.

The narrowing of the esophagus does not allow Emmett to be able to swallow his saliva. The result is that the saliva leaks over into the airway, trachea. The complicated airway that Emmett has, does not allow this body to protect his lungs from saliva that spills over. The result is aspiration which leads to pneumonia, continuing to damage this lungs.

We still have a long road ahead.Thankfully, Emmett has a strong group of Physicians who are looking out for his best interest. Dr Roa, a phenomenal Pulmonologist, Dr Egan and Dr McComber, suggested today, that it is time for us to get a second opinion. I am grateful to them for suggesting this. The idea is to have a second set of eye's to view Emmett's case and suggest their medical opinion.
The verdict to were we are going.... Cincinnati Children's Hospital, which is rated one of the top children's hospital's in the country.

I will be busy making phone call's checking insurance coverage, airline arrangement's, hotel's and doctor's appointments. 
First on my list, call the airline and see if they will be comfortable with a trach ventilated child on oxygen riding on the plain. We hope to have a nurse come along with us. If the airline doesn't feel comfortable with Emmett's condition on the plain, then I will look for a medical plain to fly us out to Ohio. 

Big steps ahead. We pray everyday for guidance from the Lord to know how to help Emmett improve and to heal. I feel like in a way I have been prepared for this. It is an aggressive move, but both Michael and I feel at peace and know it is what needs to be done!

Go Emmett, Go!

Thursday, April 26, 2012

Meet Sydney and the 5K

Meet Sydney, a dear friend of our family. She suffer's from a autoimmune disease called Crohn's disease. Crohn's is an inflammatory bowel disease that affects the GI track. Crohn's is extremely painful, can require multiple operations and is a life long disease. The Rauch family is attending the "Take Steps, be Heard for Crohn's and Colitis" 5K walk this Saturday April, 28th to show our support for Sydney and a few other's friends who suffer with this disease. The walk begin's at 5pm at the Phoenix Zoo. Phoenix reader's, if you are looking for a great event to attend this weekend, venture on over to the Zoo and support a great cause! The weather is suppose to be beautiful this weekend!

Take Steps, Be Heard for Crohn's and Colitis

The Phoenix Zoo

Wednesday, April 18, 2012


One of the universal question's of this life is "why is this happening? or why me?" I think it is only human for us to feel this way and we must go through the emotions when we find ourselves faced with a difficult trial or situation. A tragic accident, illness, a loss, separation, addition, disappointment, heartache and physical pain. No one person is free from sorrow at one point or another in there life. Many time's it can last for years on end. It is part of our existence and why we are here. So what are we going to do about it? A choice.... Strap on our boots and trudge right through it or turn away and let it destroy us.

I have found myself faced with this fork in the road several times through out my life. A wise man once told me (aka my father) "try to look for the blessings that the Lord give's you in your trials and you will be able to find a tiny ray of sunshine to help you pull through." I have clung to his advice time and time again. Don't get me wrong I have had many a days were I wished I had a padded room where I could bang my head in and scream as loud as I could, probably more day's than I would have liked. A wise woman once told me (aka my mother) " So scream! Let it out, you have good reason too. Cry there is nothing wrong with tears. Just when you are through get down on your knee's and plead for the Lords strength to be help you."

So pleading I did. I had to be strong for Ethan, I had to be strong for Emmett. Emmett was the one who has physically suffering and Ethan emotionally. Michael was a rock for all of us. We had our moments as a couple, but who doesn't. We had to come together to be a force for our boys and each other.

As I am learning the human body is like a intricate clock, each piece depending upon the other to work correctly. If one part struggles the other parts start to be effected. This I am learning with Emmett's tiny little body. We have lot's of thing's to focus on for Emmett's future. But we are taking it day by day. I am so happy we are out of survival mode for the most part and working on rehabilitation. It is terrifying to me to see the amount of damage one little button battery had made that has caused a life long impact on my sweet little boy! But he is here! That is all that matter's. God is good and I am so grateful!

Go Emmett, Go!

Thursday, April 12, 2012

Fundraising Breakfast!

Meet Devin,  a terrific 14 year old boy. He is a Boy Scout and working on his Eagle Project in effort to become an Eagle Scout. An Eagle Scout is the highest rank attainable in the Boy Scout program.

For Devin's Eagle Project he will be hosting a fundraising breakfast  this Saturday, April 14th from 7am to 11am. The location will be at Alta Vista Park 107th Ave and Williams Road in Peoria, AZ . All proceeds raised will benefit Phoenix Children's Hospital. 

Devin has prayed daily for Emmett over the past year. He desires to continue to show his support by  focusing his Eagle Project on raising money for Emmett's home away from home, Phoenix Children's. Thank you Devin, this means the world to our family.
Please come Saturday and enjoy a delicious breakfast to support a wonderful cause!

Emmett and Devin

Phoenix Children's Hospital

Alta Vista Park

N 107th Ave & W Williams Rd, Peoria, AZ 85383

Monday, April 9, 2012


   On Saturday our family was able to reunite with some dear friends, the Bengstons. What a terrific family! We met 2 1/2 years ago in the Scottsdale Shea Neonatal Intensive Care Unit.   Emmett was born 12 weeks premature. Shanna and Eric also had a premature baby, her name is Frankie.    Frankie and Emmett were room mates for the first month of their lives. Michael and I instantly bonded with Shanna and Eric. Miss Frankie is a miracle! She has made HUGE strides in her little life. She is my inspiration! She has Wowed Phyiscian's again and again. She still has no diagnosis but is doing beautifully today. Within the first month of Frankie's little life, she required a trachostomy (trach) to be able to breath. She is also fed through a G-tube just like Emmett. Frankie's parent's were told that Frankie would never walk. I stand here to tell you this day, that Frankie is Trach-less, yes breathing on her own and she is walking on her own! What a miracle!!! God is good. I thought about dear little Frankie many a times during our struggles with Emmett.  What an amazing girl with an amazing parent's. We are so blessed to have such dear friends.        

Miss Frankie with Ethan and Emmett is showing you his good side I guess...  


Miss Marley, Frankie's big sister, Ethan helping Emmett with his trach, Frankie and I and her dad Eric having fun on the trampoline.

Emmett with his pal Lloyd. 

Thank you Bengston family for such a great time! We love you!

Tuesday, April 3, 2012

I am so very grateful for my family! I get so much joy being with all 3 of my wonderful, darling boys. How does a girl get so lucky! 
We are spending as much time out side as we can right now, trying to soak up what is left of the cool Arizona spring air. Yes, it is only April but the summer comes fast here in Phoenix and by mid May it will be hot! 

I LOVE Easter! I am excited to watch the boys search for Easter egg's left by the mysterious Easter Bunny and also celebrate the LIFE of our Lord and Savior Jesus Christ!
Having Emmett home, bring's such joy to our everyday lives. 
Go Emmett, Go!