Emmett ingested a button battery that was housed in the remote control to our family room DVD player almost two and one half years ago. The damage was so significant that every since Emmett has depended on a feeding tube that was surgically placed in this stomach (G-tube) to supply him with his adequate nutrition. Emmett currently has a (GJ-tube) that by passes his stomach and feeds right into his small intestines. We tell Emmett he just has two belly buttons... one is his original... the second is his GJ-tube. He thinks it is pretty neat!
Hundreds of thousands of children and adults depend on feeding tubes for various reasons and conditions. It is so important that those using these feeding devices feel the support of those in their community. This is why we are sharing Emmett's story and reason for why he uses a feeding tube! We are so grateful for modern medicine and God's hands in all things!
I want to share with you about avery special place. A place that provides care to medically fragile children who have spent their lives in most unique and uncomfortable circumstances. The Ryan House is a non for profit organization who "provides a welcoming, comfortable environment where some of Arizona’s most special children can truly be themselves among other children like them. Parents get a much needed short break, while the kids receive care from an experienced professional nursing staff that lovingly provides care in place of the care received at home. It all adds up to a well-deserved and essential opportunity to focus on being families and living life to its fullest". (Ryan House)
Over the past 3 years, our family has come to know many families who have found comfort and benefit from the incredible services that the Ryan House provides. For a family whose child's life depends on complicated machines, equipment and around the clock intensive care, it provides them with the opportunity to have a little break, with little to no concern. Sometimes as parent's we take for granted calling up a babysitter for running an errand or going out on a date with our spouse. Their are many parent's in the community who do not have this simple luxury. Their child needs a babysitter with experience of a skilled nurse. The Ryan House provides this care.
The Ryan House also provides Palliative Care, end of life planning and care. Our family has come to know and love two dear families who has had to experience this unfortunate event. The House provides a more comfortable environment for families to say goodbye to a loved one, outside of the hospital walls.
The Ryan House is a beautiful organization and for them to be able to provide the much needed care if provides it needs the help from the community.
Meet the Leon Family
A beautiful family with two adorable kiddos with unique and special needs. I met Crystal through Facebook. I posted on Emmett's Fight months back about my concerns of Emmett flying for the first time out to Cincinnati. I was stressed over how I was going to pack for a child who depended on so much medical equipment. Crystal sent me a message about how she juggled flying with her children and sent me the link to her Blog. I was so grateful! I followed he suggestions to a "T". I also was drawn to her story seeing that she was a mother whose child had a Trach and a G-tube as well. I have been amazed by her courage and strength and enjoy fallowing her "Wild Man Willies" progress. Watch the video below and meet Crystal and Willie.
Now you can all see why I follow this amazing families adventures. What a cutie pie that little Willie is!
On top of all that Crystal and her husband have to do at home, they are helping the Ryan House raise money for the upcoming fundraiser, Run for Ryan House. They have created a team called Team William which has been made the face of 2013 Ryan House Run. Yahoo!
To help Team William raise money for the Ryan House, please visit Team William's Page.
For all of those running fanatic's out their in Phoenix sign up and support the run. Visit Run for Ryan House for more details and to register. Preregistration closes on the February 28th. The race March 2nd, 2013.
One of our follower's asked a great question! I was planning to respond back to her comment but thought maybe more of you might have the same concerning question: Q: Are all button battery ingestion cases as severe as Emmett's? What makes them worse or less severe? A: A button battery will start burning the tissue in the esophagus within 2 HOURS! Many cases (like Emmett') there is not a choking episode, so the parent's have no idea that the child ever swallowed the battery. The symptoms mask those of a common cold and flu virus, leaving the child misdiagnosed. The longer the battery stay's in the more it burns. The acid in the esophagus activates the battery, causing a chemical reaction. The battery chemically burns the tissue. In some cases, if the button battery is small enough and the child is older, the button battery may pass into the stomach and then into the digestive track. This is my big hang up right now... If the battery passes into the stomach, most physician's will say that the child will pass it by having a bowel movement. In many situations that is the case, HOWEVER I have read of battery ingestion's that HAVE burnt the stomach and intestines. I personally advise parent's to speak up and advocate for their child. The medical world is still learning about the button battery ingestion issue. This is why Emmett's Fight is speaking out about button battery awareness! There have been 11 death's recorded caused by ingesting a button battery. My heart aches for these families. In our bodies the esophagus run's along side the Aorta (heart). If the battery is lodged low enough, the battery can burn through to the Aorta. This is Emmett's Chest X-Ray
To be home. I can not express the joy that I feel as I sit at my desk in my own home to write this blog post. I have so much to tell that has happened to our little family over the past few days. So many miracles, so many kinds hearts and generous hands, I feel the love of my Savior surround me.
Emmett's miraculous healing, has caught me by surprise. In Ohio, I was talking with Dad on the phone. I expressed to him, how unbelievable the entire journey has been, I was in disbelief of the fact that Emmett was coming home just 2 weeks post his major operation. My Dad listened then kindly said, Karla start believing because it is happening, the Lord is blessing you and your family.
For six months we have been planning or anticipating this surgery for Emmett. We have been so blessed to have people in our lives who have so lovingly, kindly and generously helped our our family. From airplane tickets, to gift cards, financially, Christmas gifts, cleaning my home while we were away, setting up and decorating our Christmas tree. You name it is was done without Michael or I asking. So wonderful!
The past week our lives required a little rearranging. Michael's parent's had brought Ethan out on December 17th to be with us during Christmas. Our family was expected to be in Ohio, for Emmett's recovery, until the second week of January. Since we were coming home 3 weeks earlier there was much to do in a short amount of time. I was so grateful to have my in-law's there for help with the boys and my sanity.
The boys did great on the airplane. Emmett fell asleep for about half of the flight. Ethan made friends with this sweet elderly man sitting across the aisle from us. The man was so cute, he had his blue jeans on, a fleece flannel shirt and suspenders. He was flipping through a tracker magazine and noticed Ethan eyeing it from the corner of his eye. The man turned to Ethan with his sweet wrinkly grin and said, "Son how would you like a tracker magazine". The look on Ethan's face of priceless. Thank you sweet elderly man from Illinois.
My Dad and brother Scott picked up our family from the airport. It was madness with all of the holiday travelers. We eventually found each other and headed home with a car packed full of luggage. As the car made a turn onto our street, I noticed dozens of car's lining the side walk. I said, "wow someone is having a party". Little did I know that that party was for our family. Over 150 people young and old, filled the cul de sac we live on. With candles in hand they sang sweet caroling hymns. I could not believe it! I quickly woke the boys and Michael and I ran out of the car to greet the crowed. It was so beautiful, reverent and peaceful. Michael and I were so touched to see such a kind and warm welcome home for our family. I know there were many I was not able to see or thank for coming out that evening. Thank you! It meant the world to our family. A beautiful Christmas gift. Thank you Wendy, my Mom and Candra for arranging such a priceless moment for us to always remember. I love you!
After giving hugs and waving farewell to our guest, we entered our home to find our Christmas tree set up, trimmed and the tree skirt filled with Christmas gifts. Michael and I just looked at each other with awe! Our home was cleaned and linens were changed. Breakfast for the next day was on the counter along with homemade bread and Christmas goodies. Unbelievable or I guess I should say believable:)
Christmas Eve was simple we stayed in our pajama's until one in the afternoon. Napped. Ventured over to my parent's and enjoyed a night of delicious Christmas ham, singing, reading the story of Christ's birth and eating Christmas cookies. All of the wonderful tradition's I remember doing since I was a little girl.
Christmas morning we awoke to evidence of Santa's midnight visit. A half eaten cookie, chocolate milk gone and Santa and reindeer foot prints marked by snow on our front porch. It was a magical morning! Christmas gifts were open through out the day. Micheal's parent's made it home safely and joined us for a Christmas feast, that she kindly prepared.
I love watching Christmas video's. My favorite is of those about the birth of my Savior, Jesus Christ. I found this one and loved the message it shared. I just had to share it! Christmas for me is to remember the life of Christ and to celebrate His coming to earth and to try and follow his example. I felt His presence so evident in my life these past few years as I have learned to witness his hand in my own and my families lives, through those around me, who have reached out to help. I am so grateful for all of the kind emails, texts, phone calls, fb comments that have encouraged our family along with rough journey. I am thankful for your faith and prayers. What a miracle we have witnessed. Emmett's road to recovery is not over but we are on the right path and we looked forward to a progressing future.
I want to start off by saying.... I maybe a little excited that it is supposed to SNOW here this weekend! I am an Arizona girl, so a white Christmas makes me a little giddy! I am excited for my boys to see the snow too. Having said that, Mr Weather-man I really hope you are correct with your forecasting:)
I am so happy to have our oldest son Ethan here in Cincinnati with us now. He flew into town last night with my husbands parents. Michael went to the airport to pick them up. On their way back Michael and I changed shifts at the hospital. I hopped into the car, and swung myself over to give my sweet bright eyed Ethan-bug a kiss on this adorable cheeks. He squealed with excitement. He was so excited to tell me about the airplane ride and how weird if felt when the airplane took off and landed.
We snuggled in bed, until he told me, "mom you really need to sleep now, just hold my hand okay". I am so glad he is watching out for my best interest. lol.
I sure love this boy. He has been through so much these past years. I have major mommy guilt feelings of neglecting him for all the times I had to be at the hospital with Emmett. Ethan has always been in the best care while I am away... Grandparent's, Aunts and Friends houses. I hope and pray that he understands why I have to leave and be gone so often and long. He has his moment's with me, but when he takes the time to snuggle and tell me "I love you to the universe(he is a Star Wars fanatic) and back" I melt.
Ethan has never taken out any anger or resentment towards Emmett, which I am so thankful for. He LOVES Emmett and is so protective of him. Last month I had to place Emmett into time out for throwing a toy car that targeted Ethan's forehead. Ethan was in tears and I sat Emmett on a chair facing the corner. Tears then started rolling down Emmett's little cheeks. Seeing his brother's sadness, Ethan came up to me and said, "mom I am okay. You don't need to put Emmett in time out, it didn't hurt that bad, its okay, I'm okay". He never likes to see him upset.
I am thankful for Ethan's courage! He can have his feisty moments, but he sure has a big heart for his brother and for those around him.
He also can say the most hilarious comments. Today Michael, Ethan and I ran to target to pick up a little Christmas tree for our room here at the Ronald McDonald House. Michael had bought a package of beef jerky. Once we got back situated in the car, Ethan asked for a piece of beef jerky. A moment later, as we were waiting at a intersection, we hear Ethan state, "Wow! this is a really yummy cow". Michael and I just started chuckle. I will never look at beef jerky the same.
Ethan maybe the only few 5 year old's who know the anatomy of the body. A year ago, I was taking Ethan over to a friends house to play. I called for him several times to hurry and find his shoes. After the fifth time calling, Ethan walked into the room with a frustrated and deeply concerned voice, "but mom, I can't find my esophagus!" The look on his face was so honest and sincere I tried so had to hold back my smile as I tried to explain that his esophagus was in it's rightful place.:)
I know Heavenly Father blessed Ethan with great knowledge and a terrific sense of humor. He has the most infectious laugh, every time I hear it, I can't help but smile. I am so grateful and honored to be the mother of these two beautiful boys! I sure love them with all my heart!
It has been awhile since my last post. Life has been a bit crazy with making arrangements for coming out to Cincinnati for Emmett's big surgery (a new esophagus).
Today is day 7 post operation in Cincinnati, Ohio. We had the esophagram today and Dr vonAllman, Emmett's surgeon, gave us two thumbs up. He was pleased with the function and to confirm that there was no leakage at the surgical sights connecting the new esophagus.
The voyage of taking Emmett down stairs to get the esophagram was quite an adventure. Emmett is still in the Pediatric ICU(PICU). For him to travel, it consisted of 1 Resident(Doctor), 1 nurse, 1 respiratory therapist, 2 transport assistance and 2 worrisome parents. We were quite the entourage.
Emmett still depends on sedation and pain medication and a ventilation system connected to his trach to breath. Emmett also has quite a few impressive battle wounds from this surgery. During the esophagram Emmett had to be rotated from one side to the other, which is extremely painful with his incisions. I think the most difficult part as a mother, is to see the pain and panic in Emmett's eyes. His eyes say so much and when they look at me with such desperation for help, it makes me want to crumble. But I can't... I need him to be strong and so I try and be strong for him. I whisper a silent prayer to God above for mercy and peace on Emmett's behalf. I then grab his hand and try and sing a song. His favorite is,
"Jesus wants me for a sunbeam, to shine for him each day
In every way try to please him, at home, at school at play
A sunbeam, a sunbeam, Jesus wants me for a sunbeam
A sunbeam, a sunbeam, I will be a sunbeam for Him"
Emmett is definitely my "Sunbeam"! Emmett just closed his eyes and held on tight to my hand. He is so amazingly brave and tolerant. At 3 years old, it is hard for him to understand why the Doctor's and nurses need to do certain procedures. My dear friend Michelle and Emmett's previous PICU nurse in Phoenix, has taught me to talk Emmett through what is going to happen before it happens. Emmett responds real well to this. So Amazing what he understands and comprehends when he is on so many narcotic's and pain medication.
I am so grateful for all of the tender mercies we have experienced. 1. We have had two incredible day nurses that love Emmett and are very attentive to his needs. 2. The Attending Intensivist (PICU Doctor) is terrific and is patient and listen's to Michael and my concerns. 3. Emmett's surgeon, Dr vonAllman is so kind and checks in on Emmett twice daily. 4. Michelle(Emmett's Phoenix PICU nurse) was able to come out and give support for the first week we were here. 5. Emmett has recovered more stable and quickly than any other major surgery. 6. Emmett preoperation was the healthiest and strongest he has every been in his short little life so far. 7. Michael will be able to stay out with me the entire journey here in Ohio.
Our Father in Heaven is AMAZING! I LOVE Him. I know my Savior LIVES and carries our burdens if we have FAITH and believe! I am thankful for all the many ANGELS here on earth who have supported us in prayer, emotionally, physically and spiritually!
