Raising Arizona Kids Article!

A grande thank you to Raising Arizona Kids for spreading awareness about the danger's of button battery ingestion. We are also grateful for their efforts in sharing Emmett's story and our awareness campaign.

Cincinnati trip 2: Results!

We set off to Cincinnati for a second round of tests and scopes at Cincinnati Children's Hospital for Emmett this past week. It was a quick trip.

Emmett does well on the airplane, we loves watching the hustle and bustle of the airport and the planes taking off. He requires support from oxygen while on the plane when we reach the higher altitudes. FDA regulate that we must take a certified personal oxygen concentrater (POC device) with us on board.

POC device

We don't exactly pack light.  The only bag that housed Michael and my belongings is the red duffle bag seen in the picture. The rest belongs to Emmett, containing all of his medical equipment. Most of which we had to carry on board with us. Almost all medical equipment stays with Emmett.

Emmett relaxing during one of the layovers in Denver.

After research, speaking with physicians and much praying, we have decided that it is time for Emmett to have an Esophageal Transplant. The muscle, nerves and tissue of his esophagus is non functional. We have known that this was coming for some time now. It's difficult to think about all the pain that Emmett is going to have to go through again. The surgery is complex, complicated and not a  common surgery. 

Emmett at Cincinnati Children's Hospital

The surgeon who will be performing the surgery in Cincinnati told us to plan for Emmett to be in the hospital for a minimum of 4-6 weeks post surgery. Our family will be taking up a temporary residence in Ohio. The date for surgery is unknown, but it will take place in the next month and a half.

Michael and I are prayerfully making the arrangements and pre planning for this endeavor. 

I will be out in Ohio with Emmett the entire hospital stay, Michael will have to go back and forth to work in Phoenix. Ethan will be staying with family for the first couple of weeks. The first two weeks post surgery, Emmett is very fragile and unstable. I don't want Ethan to see or remember his brother that way. I know it is going to be really hard for Ethan to be away from Emmett for that long. One of his Grandparents will bring him out to Ohio after a few weeks.  Michael and I are so grateful for the love, support and help from our wonderful families and parents. It will be difficult to be so far from home during the holiday time, but we are hoping for a fresh start for the new year.

The plan is to stay at the Ronald McDonald House that is on the hospital campus.  We are so grateful for all of the love, support and prayers in behalf of our family. We could not do all this without your prayers and faith.

Right before we came home, Michael and I took Emmett to as quaint little park. The grass was so green and the leaves were so beautiful in their fall shades of red, orange and yellow.

My heart is always torn between helping Emmett and being with my Ethan-bug. I regret not being able to be with him  all the time. He is so patient and caring for his little brother. He has been through so much emotionally but I am grateful for his endurance and faith. He is such a joy to our lives!

I sure love you Ethan!

Happy Birthday to My Dear Sweet 3 year old Emmett!

Bear with me as I am supper emotional writing this blog post this evening. One of the reasons for my blogging is to keep as a journal for my family. This post I am dedicating to Emmett.

Dear sweet Emmett! Oh how you have changed me for the better. I had never known such sorrow nor happiness since you came into my life. I have learned to appreciate the tiniest rays of sunshine that creep through times of dark trails. I have learned that my Father in Heaven will NEVER forsake me or my family, if we but ask and have faith in Him and our Beloved Savior. 

At 7 weeks of pregnancy, I was warned of a weak and fragile pregnancy. Starting at 13 weeks I was told weekly that I was to prepare myself for your passing. I plead with the Lord, for strength and guidance to know what was best to do. I tried my best to do all I could to stay down and to be able to help you grow and have a fighting chance. I had never prayed so hard in my life as I did at that time. You miraculously grew in my womb until 28 weeks gestation. I had been hospitalized for 3 weeks prior to your arrival. I was prepared for your coming as I knew something was not right as I started to bleed heavily. The Lord blessed our Physician to be at the right place at the right time for an emergency C-section. 

I had a glimpse of you, when you first entered this world. You were oh so tiny and fragile. I remember the NICU team pumping your chest and giving you breathes through an airway bag. You were rushed away and it felt so foreign to me to not be able to hold or look into your eyes right after the delivery.

The next day we were told that your bowels had ruptured and that you needed an emergency surgery. The prognosis was unknown and your dad and I came to your incubator to pray with you and hope that we were not saying goodbye.

That is when we met wonderful Dr Egan for the first time. He was the emergency surgeon on call. At about five hours later, 1:30am, Dr Egan came into to tell us that you did beautifully in the surgery and it went better than expected! We felt such relief! Praise God!

After a few other ups and downs in the NICU and 3 months later, you were able to come home! We were overjoyed to be a family once again under one roof!

We had a few set backs, due to you being 12 weeks premature. But nothing major and we loved life and learned to enjoy every minute of it! You and Ethan bonded instantly. The first time your brother met you in the NICU he said, "hi baby Doc". After that, the nickname stayed, you were not just Emmett but Doc!

You had a faint cry as one of your vocal cords were paralyzed. It was sweet and fit so perfectly with who you were. What a sweet demeanor you still have today.

I still melt when I see your beautiful blue eyes. You were also blessed with an infectious smile!

The day we celebrated your first birthday was a monumental day! One years old! We did it! I remember crying over the thoughts of just one year before we hoped and prayed so fervently to see you make it to that day. You had, it was so wonderful!

Little did we know, that 2 weeks post, we would experience a nightmare that still haunts me to this day.

After several flu like symptoms and two visit's to the Doctor's office and then the emergency room, we discovered that you had swallowed a button battery that was housed in the remote control to our dvd player. I thought I had died that day! Watching you lay so sick, helplessly and so full of pain on the bed in the Pediatric ICU. I beat myself for not knowing that you had swallowed such a heinous and abhorrent object! I ache at the thought that it was burning you so fiercely inside your sweet innocent body. Damn Battery!!!

You FOUGHT! Your strength was inspiring to all who came to see, work, know and love you! I had many people express their respect and reverence for your ability to fight! I learned to trust God! To place what I could not control into His mighty hands. I know you had guardian angels circling about during those 8 and 10 hour surgeries and many, many painful days in the PICU. I know that you have suffered so much pain that only the Savior could ease and help carry that sorrow. As a parent, I thought I would be the one to teach you about faith, but you have taught me. To have faith, to be strong, to be happy, to believe!

That year had many ups and downs. Stable and unstable moments. We were richly blessed with so many Physicians and Nurses who loved you and helped care for you! We prayed fervently for them to know how to help and care for you. Thank you Dr Egan!

I will never be able to comprehend the pain you have suffered. The amazing part was, people came into your room to try and cheer you up, but they were the one's who left with a smile and laughter. You are a special happy sweet boy! A beautiful gift the Lord has given to you.

I know this difficult road is not near over, much is yet to come. There will be physical issues that will last for the rest of your life, but you are strong! Don't let these set backs stop you from moving forward and fullfilling your life's purpose.! With the Lord by your side, you can do all things! 

I am so grateful for the love and patients of your big brother, Ethan. I know you love and admire him so. There were and still are days when neither I nor your dad could cheer you up, but when Ethan walked into the room, the side of your lips turned into the ever so slightest smile. I love watching your sweet relationship bloom. The prayers your brother sent heaven ward for you were so sweet and perfect I could feel such strength through the Holy Spirit. A child's prayer. I could imagine that his faith alone helped carry our family through these past several years. But it was not just Ethan's, or mommy's or daddy's faith that was used. Many, many people across the country and even parts of the world prayed for your healing and recovery. Amazing!

Happy 3rd Birthday sweet boy! I am so grateful you are a part of our family! I love you!

Go Emmett, Go!!!!

-Mom

Thank you Kathy Scoffield for helping to capture our life's beautiful moments!

The ADAPT Chair

Emmett deals with a few sensory delays due to him born premature and long term hospitalization because of  the battery ingestion almost two years ago. Emmett was deprived of this important development because of the state of his health and his complicated medical cindition. Hooray!!!  Emmett, is now able to work on correcting and catching up for the lost time. It will not be an easy road, however their is a path! So grateful for modern medicine and technology.

Information on the bodies sensory systems:

"All human beings receive information from their internal and external environments through the senses: vision, hearing (auditory), touch (somatosensory or tactile), taste (gustatory), smell (olfactory), vestibular (movement), and proprioceptive (joint and muscle). We respond to these stimuli automatically. The term sensory integration refers to the process by which we receive this information, the central nervous system directs the information to the appropriate parts of the brain, and the information is "integrated" or synthesized, so that we can respond to the stimuli in an adaptive manner".( Source of quotation) 

Miss Jen, Emmett's Physicial Therapist, connected us with Gayle from Southwest Human Development. She is a Physical Therapist who is the founder of the ADAPT Shop. Throughout Gayle's career she has been researching and studying ways to help children with their sensory development. She has invented the ADAPT Chair!

Emmett is at high risk for scoliosis due to the many operation performed on his abdomen and right thoracic side of his body. The chair will enable Emmett to sit up correctly and give him support to rotate from side to side. It will also give him the correct support and posture for when we are ready to start feeding him by mouth. Some day, some day. Sigh! Because the chair is designed to form a snug fit, he is able to receive the sensory input he needs to be aware of his surroundings. The sensory system is so incredible, I am so amazed each time I learn more about it.

The ADAPT Chair

Gayle came out to our home, took measurements of Emmett, and created a special chair made out of  a foam like substance. Best of all it is washable with rubbing alcohol. She measured Emmett's legs, waist, back, arms, neck and shoulder's. The chair was customized and fabricated just for Emmett-bug!

The ADAPT Chair also came with a table.

The chair pushes right into the side of the table.

Emmett's little bottom and hips etched out for a perfect fit. 

Notice his dinosaurs lined up perfectly by size. He cracks me up how meticulous he is.

Brotherly love.

I couldn't resist, I sure love this little Ethan-monkey. He sure brings joy to my life!!!

So grateful that we live in a time with so much knowledge and advances in medicine. I am so grateful that God is aware of our needs. So grateful for His love for us!

Dinosaurs and one adorable Paleontologist!

While in Cincinnati, we had an afternoon of free time. To fill this time we decided to check out the Cincinnati Museum Center which housed a Children's Museum inside. An old train station was converted into the museum. Lovely architecture!

After noticing how much Emmett enjoyed the museum, I thought it might be nice to take the boys here in Phoenix. Ethan is obsessed with Dinosaurs. He expressed to my sister, while staying with her during our trip out to Cincinnati, that he wanted to be a Paleontologist. I smiled at the thought of him saying such a big word, I had to Google to make sure I spelled it right. 

Ethan, Emmett and I ventured out to the city of Mesa to visit the Arizona Museum of Natural History.

Ethan and the Mammoth

The museum had lots of hands on activities for children.

The boys and I put together a puzzle of a Mammoth

Ethan using binoculars to catch a glimpse of a Pterodactyl. Ethan absolutely enjoyed the museum. I love seeing his face light up! Awww, I love my boys!

"Brace it for Brayden" Please Read!!!

With a heavy heart I want to share this story with you, please read and share among your friends.  Heather a heroic mother, contacted me and shared her families story of heart ache and sorrow. The outlook and brightness that she and her husband share is amazing and truly inspiring. Together they want to share their son Brayden's legacy by spreading awareness in an effort to save another child's life!

Brayden, a beautiful 3 year old boy, was sent home to Jesus December 31st, 2011 after becoming a victim of a heavy dresser and television set that had fallen on top of him. The impact of the fallen dresser killed him instantly. He was simply curious and climbed up the drawers after being tucked into bed that night. .Brayden's mother shared, "After kissing (him) goodnight and beginning to watch his movie, we never knew that would be the last time we would get to spend another waking moment with our son". 

What courage Brayden's mom and dad have for sharing their son's story and bringing this to other parents and caregiver's attention. Brayden's parent's have started a non profit foundation in honor of their sweet angel Brayden called "Brace it for Brayden". Please visit their website by going to Brace it for Brayden and read Brayden's story and then share it with your friends. "Brace it for Brayden" also has a facebook page.

Heather, I want to share that our family immediately took action and started "Bracing our shelves for Brayden". Here are two book shelves in Ethan's room. We went to Home Depot and secured them into the wall. Thank you Heather for bringing this to our attention and sharing your story! Our prayers are with you, God Speed!

Cincinnati Part II

Speaking with a trach is not the easiest of activities to do. When I first learned about a tracheostomy and its function, I had to wrap my head around the fact that my son would not be using his nose and mouth to breath. His main source of airflow to his body is through a little tube called a trach.

Emmett has several factors that make it difficult to speak. 1. Emmett's vocal cords are paralyzed. In the image below show the trachea, vocal cords and the larynx. Properly functioning vocal cords should open and close when we breath, speak, drink, eat, cough and so forth.During a procedure performed at Cincinnati Children's Hospital, the Ears Nose and Throat Doctor discovered that Emmett has paramedian vocal cord paralysis, meaning his vocal cords are paralyzed in a half open position. This gives him a very narrow airway, which is dangerous and quiet voice. As parent's the voice is not the issue we are worried about, it is the narrow airway. It is not something that can be fixed on its own in Emmett's case and in the future will have to be surgically repaired.

image from cedars-sinai.edu

A Passy Muir Valve is a one way valve that is beneficial for those who have a tracheostomy.

The Parry Muir Valve (little blue valve) allows air to flow into the lungs but not out through the trach. In Emmett's situation he will have to learn how to push air past his trach and up past his vocal cords. This will create positive pressure that will encourage proper swallowing techniques, help to prevent aspiration and have a little bit of a louder voice.

image from ceu.passy-muir.com

Preventing aspiration is a big key in helping to prevent future damage to Emmett's lungs. 

Emmett will be returning to Cincinnati Children's Hospital in a few weeks for a second round of scopes. After much thought, research and praying and praying and praying and pondering and praying, Michael and I have decided to have the reconstructive esophageal surgery performed at Cincinnati Children's Hospital. The surgeon who we met and worked with their, specializes in esophageal reconstruction and is the director of an esophageal center in Cincinnati. The surgery that Emmett needs is extremely complicated and is a last resort for his esophagus. We know Emmett will conquer this next battle with the help of our Heavenly Father by our side. Surgery has not been scheduled yet, we believe after this next set of scopes, we will have a better timeline of when surgery will happen. Deep breathes, deep breathes.

Go Emmett, Go!