Dearest Emmett's Fight supporter's,
I am writing you to express that I will be absent from posting and responding to messages on facebook, blog and email for the next few months. Our oldest son Ethan has become critically ill. Michael and I ask for respect of our families privacy at this time as we are coping with this difficult time. Please know we will be back to spreading awareness as soon as we can. Thank you for respecting our wishes at this time!

Good News Day!

Do you ever have those days were you just want to jump for JOY???

Well that is how I am feeling right now after receiving great news from Emmett's GI Doctor, Dr McOmber.

For the past eight months, every 2-3 weeks, Emmett has been going into Phoenix Children's Hospital for a outpatient procedure called an Esophageal Dilatation . The reason for the dilatation's is because the area were the "new" esophagus and the old esophagus were sutured together created a stricture making it difficult for Mr Emmett to swallow.

Two weeks ago, during the routine esophagus dilation, Dr McOmber spotted an area of "concern" a possible  fistula. Which is a nightmare... A few days later another procedure was performed to determine if that "area" was leaking to Emmett's chest. The test ruled out NO such passage way. Phew!

For the good news!:

Today Emmett's esophagus was dilated to the desired diameter and did not shrink back to a smaller measurement. Also, the "area of concern" from two weeks before was no longer there! Thank you Father in Heaven! So Emmett's dilation's will now be spread out to once a month instead of every other week!!!. As long as the esophagus doesn't shrink back to a smaller diameter, then the dilation's will continue to spread out over time even more. Hooray for MIRACLES! 

(site of the stricture in the esophagus)

I am so thankful for all the many blessing and miracles we have received!

Go Emmett, Go!

Tell your story: Sophie's Story

I received an email from a mother whose daughter suffered a serious injury from a button battery. However, the injury occurred not by ingesting the button battery. We are so grateful for the many parent's who trying to make a difference by sharing their difficult journey in trying to save other children's lives.

Sophie's Story:

 Graciously shared by her mother Shea

"Sophie put a button battery in her nose in January on a Sunday afternoon.  I took her to Urgent Care that same day.  The doctor tried to remove it (as we all held her down).  He said he heard a clink but refused to do anything else.  She had to see an Ears, Nose and Throat Doctor (ENT).  That night was one of the worst nights of my life.  We did not know what she put in her nose, so when she would scream uncontrollably we would just do our best to console her.  Needless to say, she was being shocked and we didn't know it.  When the ENT saw her the following afternoon we held her down AGAIN�and he looked with his microscope.  All he saw was bodily fluids surrounding the item�he didn't see the battery.  She was scheduled for surgery the next morning.  So, that night was worse than the night before�she was exhausted and feverish.  She was just moaning non-stop.  I just held her and rocked her.

When the ENT came out of surgery he was stunned.  He had no idea that it was a battery.  Not only was she being shocked, the battery was cracked and was leaking battery acid.  She had 3rd degree burns.  She was in danger of separating her septum as the burns were severe.

We had nightly treatments that haunt me to this day.  I had to hold Sophie and flush her nostril three times and follow with a think anti-biotic cream.  She would scream!  She was on antibiotics for 4 months.  She had to have surgery every two-three weeks.  It got to the point that the nurses and anesthesiologist all her knew her by name.  Her hospital stays lasted about 4 months total.

We are still recovering physically and emotionally.  Every time she has a stuffy nose she screams.  It is difficult  to tell whether or not the congestion is uncomfortable or if there is a real problem.  I am not sure if she will have to have any additional surgeries.  Time will tell.  The ENT believes that we may have saved her septum.  There was a time that we almost  had to go to Children's Hospital in Birmingham to have reconstructive surgery planned.   The ENT gave it one more week with extra flushing and ointment.  It seemed to slow down the scarring.

I wish the battery makers would consider making a battery that was not as toxic and the button battery."

Thank you Shea for sharing Sophie's story. We pray for her continued recovery! Go Sophie, Go!

Coin Lithium Battery Safety Video

The National Safety Counsel and Energizer are reaching out to spread awareness about the danger's of button batteries in the home. They suggested 4 S's to remember: Store, Select, Secure and Share to help keep your home safe.

Take a moment and share this video with your family and friends!

                       

Awareness Alert! Hearing Aids

I receive emails and private messages on a daily basis, of different peoples experiences or interactions with button batteries. I am so grateful that so many of you are taking this issue seriously and are helping our family spread the word. Over the past month I have had several reader's write to me about Hearing Aids. Hearing Aids are used for individuals mature and young in life. The issue is, how the button battery is housed and stored in the hearing aid devise. Some manufactures compartmentalize the button battery so it is difficult to remove. A pain to open for some I am sure, but when the hearing aid is used by a small child, the extra effort to remove the button battery is essential for their safety.

With her permission, I want to share an experience and concern my friend Cindy wrote to me about. Here is what she wrote:

"I have been meaning to contact you about my daughters hearing aids. I thought if you contacted the company it would maybe make a larger impact then just me a parent that's frustrated with a design flaw in this otherwise great hearing aide my daughter wears. Tabitha got these new hearing aids recently they are made by the same company as her old hearing aides. Her old hearing aids had a white tab on the inside to hold the battery in place when the battery compartment is opened. The new hearing aids do not have this and I would say that 80% of the time when we open up the battery compartment on these new hearing aids the battery often falls out on the ground and because it's a small button battery (size 13) it can be very hard to locate especially if it falls on the carpet. We have even had this same issue when we have had to open the battery compartment at church and the battery falls to the ground and bounces around on the wooden floor and it's hard to locate. I worry for any little child that might find it and put it in their mouth like they like to do at that age. 

I would love it if you could bring this issue to the attention of Phonak. I think they would be more likely to give this attention after hearing of Emmett's story and your awareness campaign. Thank YOU"

Unfortunately many manufactures are  unaware of the issue of button battery ingestion with small children.  At least I hope that is their excuse in why they are not making an effort to house these tiny batteries in a more appropriate manner.

I am hoping to be able to reach out to someone at Phonak  to shed light on this safety issue. I am just praying I will come in contact with someone who will find urgency in this matter and make a change in the design. Wish me luck!

Colin's New Esophagus!

Meet our friend Colin! This sweetie pie is currently in surgery today at Cincinnati Children Hospital. He is undergoing the same surgery Emmett had performed almost one year ago. Using the colon to replace, in Colin's situation, create an esophagus. 

I met Colin's mom through facebook. The surgery is unique and rare therfore there is only a small population of patients and families who have undergone this particular surgery which is called a Colonic Interposition. Colon's mom has shared with me a little about Colin's diagnosis and condition:

 "He has long gap esophageal atresia and he also had a

tracheoesophageal fistula which was surgically repaired when he was 2days old. Essentially, he was born with an abnormal connection between his lower esophagus and his windpipe. His upper esophagus ends in a blind pouch just below the back of his throat. The gap between the ends of the esophagus are usually short enough that they are repaired shortly after birth- but the gap in Colin's ends was 6.5cm and is now 3cm- but still too far apart to attach naturally- hence the segmental colonic interposition that he will be having done at 

Cincy. 

Colin also has VACTERL association. it is a non-random association of birth defects. Each letter stands for a different birth defect. Colin has V C T E R L.. He also has a cleft lip which is not associated. So he has a long road and fight ahead of him even after this first surgery. It's likely he will have at least 6 surgeries before his first birthday".

This little guy and his family could sure use some faith and prayers in their behalf today. We are so grateful for the many endless prayers for Emmett's surgery last year. We know the reason for Emmett's positive out come, is because of the many prayers sent to our Father in Heaven in his behalf. Thank you! Help us strengthen their family through faith for Colin today and the next several weeks for a safe recovery.

 Go Colin, Go!

Have you met Michelle?

I would like to make a tribute to a very special person in our families life. She has been with our family through the thick and thin. In the darkest hours of my life, she was a guardian angel that helped me know I have a Father in Heaven who loves me.

Three years ago yesterday, October 20, 2010, Michelle came into our lives. She was the Pediatric Intensive Care Unit nurse who cared for Emmett the day after he had the button battery removed from his poor little esophagus. I still remember talking with her the first time she came into Emmett's room. There was something about her, a light that I desperately needed. Emmett had coded (code blue) the previous night. The doctor's in the PICU were uncertain of Emmett's condition and whether he would survive the hideous accident of ingesting a button battery from the remote control of our DVD player.

I remember feeling life-less, empty, terrified and desperate for a miracle. My dad came to be by Emmett and my side. Michelle, noticing my defeated body language, suggested I take a walk outside. I remember looking at her and thinking, "lady are you seriously crazy. My child is hanging on for dear life and you are suggesting I take a walk." My sweet dad looked at me and nodded for me to leave the room and get fresh air. 

So I did, I remember walking down the south sidewalk of the old Phoenix Children's Hospital with tears streaming down my cheeks. The sounds of construction, worker's, machines and tractors were all swirling around in my head. I needed to escape. I began to pray... and I needed to pray there and then... I started to pray out loud. At that point I didn't care who heard me, I needed the love of my Father in Heaven to surround me. I needed Him to wrap me in the arms of his love!  I can not recall how long I was walking for, but I remember coming to a point of exhaustion. I sat on the side of a parking lot wall. I noticed that all the noises of the world that were filling my heard before, seemed to be silent. Every worldly noise except for one little gentle sound... I looked slightly to my right to see what was making such a sweet simple noise. It was a little sparrow. 

At that point I laughed inside of myself. This beautiful little bird is a creation of our loving God, I started to realize that just like that bird our Father in Heaven has created and is in charge of all things. I knew that my Father in Heaven loved me and that there was only one other person who understood my heart ache and Emmett's pain... It was my Savior.

To this day... I have a special place in my heart for Sparrows.

I came back to the room in the PICU were Emmett was medically sleeping. I thanked her for helping me to "get out of the room". Right then and there I asked her if she would be willing to be Emmett's primary nurse. I am sure she was shocked by my forwardness, but she smiled and said she would love too.

There was plenty of rough days ahead for Emmett. He struggled for life most of that year. Michelle was always so gentle and loving with Emmett.  When Emmett's face would wince with pain, Michelle would stroke his distressed forehead and place a little stuffed animal right next to his face, arm or hand. 

Although Emmett was fully medically sedated for months, Michelle recommended that I sing to him, read stories or just talk to him. She stated that although his body was not responsive that he could still hear my voice. I remember a time when Emmett was in a lot of distress, as Michelle and other medical staff were rushing to his aid, Michelle desperately said, "Karla talk to him, he needs you". With tears running down my face, I began to sing him a Primary song, a song about Jesus. There were so many moments that year I felt hopeless as a mother.  My child was suffering and I could not cuddle him or take his pain away. I am so thankful for Michelle, encouraging me to speak to him. Those simple acts made me feel as if I could still be a mother even though so much was out of my control. Thank you Michelle.

That year it was difficult for everyone in the family. Ethan would come to visit his brother in the hospital. Michelle always made an extra effort to help Ethan feel secure and comforted when he saw his brother laying sick and helpless in the hospital bed. She took the time to explain to Ethan what each of the wires were for and why he needed them. To my surprise his little 3 year old mind seemed to grasp it. Amazing. There were plenty of days, I just simple needed a hug, chat or reassurance. I am so thankful she was there!

Michelle helped me start the Emmett's Fight Foundation. She, Michael and I brained stormed ideas for several weeks on what we could do to prevent another child from suffering like Emmett has. She is now a board member of our campaign! She helped give me the confidence to speak out to anyone who would take the time to listen. Before Emmett's accident, I would have never spoken to large groups let a lone a News station. When I wanted to run the opposite direction because of insecurities and fears, she helped me remember that I have a "voice" that needs to be heard! Michelle has a phenomenal family: Michael, David, Aidan, Keali and Jameson. Thank you for sharing Michelle. We love you Michelle! Thank you for changing our lives for the better! I hope you know you are stuck with us now forever. Thank you for being such a terrific nurse and a loving friend!

- We all LOVE you!

Karla, Michael, Ethan and Emmett