Wednesday, December 26, 2012

Our journey home to Arizona and a Merry Christmas!

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!

                                       Believe Daily Affirmation Card - Script Business Card Template
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.

Merry Christmas Everyone!
Go Emmett, Go!

Tuesday, December 18, 2012

Being Ethan's Mom

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!

Thursday, December 13, 2012

Emmett's, Mommy Thoughts

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!
God Speed Emmett!
Go Emmett, Go!

Sunday, November 18, 2012

Emmett on Animal Planet!

Emmett's survival story will be shared with all the world on the television series Monster's Inside Me  this Friday, November 23rd at 8pm Eastern/Pacific. For Arizona viewers 9pm!
I am excited about the air date for it falls on "Black Friday" the largest consumer shopping day of the year. I hope, the episode will bring awareness to parent's of the danger's of button batteries and encourage them to safe guard their home this holiday season.

Michael and I have not seen the episode, we are anxious to see how it all turned out.
Hooray for Button Battery Awareness being Spread! 
 Go Emmett, Go!!!!

Wednesday, November 14, 2012

Ah-ha moment!

I have learned in life, that sometimes there is a rain cloud that seem's to hover over head. But God always provides rays of sunshine to shine through the dark clouds. The rays  bring peace and comfort to help get  through life's tumultuous storms. I am so amazed how many miracle I have seen through out these past few years.
 I am grateful that my Loving Heavenly Father has not given up on me and my family. I have kind of had... okay, I will just say it... I have been having a pitty party the past few days. Not  "why me" but more "I don't want to do this anymore". I am tired emotionally, physically, spiritually and any other way possible. I just want my boy to be free from all of this pain and anguish. To LIVE free from pain.
I was just thinking of the movie, Sound of Music when the Nun states, "When the world closes its door, God always opens a window". I have learned this to be so incredibly true. He does, I have seen so many miracle, there are so many WONDERFUL people in this world. I am so grateful for all the faith and support we have witnessed. I am grateful that "when ye ask in faith, ye shall receive". I am working on that faith part, but he is so patient and understand.
Hooray for uplifting ah-ha moments!
These are my miracles!!!!

Wednesday, October 31, 2012

Safe Halloween Lights

This time of year there are lot's of fun holiday jewelry, hats, bracelets and necklaces. Please double check to make sure the festive item does NOT contain button batteries. If so PLEASE make sure that the button batteries are safely contained before handing them to your sweet little ones. 

Below is an image of a Halloween reflector that contains button batteries. I was able to open the cap way too easily.
The reflector idea is smart idea, the compartment is not.... Look below for a more safe options!

 Glow bracelets are fun and do not contain button batteries!!!

Have a safe and Happy Halloween!

Sunday, October 28, 2012

Emily's Toys 4 Joy!

Meet Emily! Help her donate toys for the pediatric patients at the local Hospital's for this holiday season!

Emily is a beautiful young lady who has been making a difference in many children's lives for the past 4 years.
A few years ago, Emily was hospitalized for a serious injury. Emily's Story. During her hospital visit she received a gift that helped to distract her from the many unknown's that the hospital brings.
Once she was discharged from the hospital and sent home, Emily decided, along with her parent's to would  start an organization. The organization today organizes Toy Drive's to donate Pediatric unit's in the local hospitals.

December 2011, Emmett was hospitalized for the entire month. Michael and I had to make many difficult and aggressive decisions for Emmett's care. He had a portacath and a trach surgically placed that month. Our time was spent at Emmett's bedside or tending to Ethan's needs. This allowed very little time to do our Christmas shopping for the boys. Christmas is very special to our family. 
As the week of Christmas arrived, we had a talk with Ethan about how Christmas  was going to be very simple and how the most important thing was that we were going to be together with Emmett as a family.
On December 23rd, Wendy our dear friend and Child Life Specialist escorted all the parent's in the Pediatric ICU to a conference room at Phoenix Children's Hospital. The entire room  floor to ceiling was filled with toys. We were given a bag and were told to go "Christmas shopping" for our family. I was so overwhelmed by the amount of toys for all ages that had been presented in the room. I was so emotional and  thankful that my boys were going to be able to have presents to open under the tree. 
A majority of these gifts were donated from Emily's wonderful foundation, Emily's Toys 4 Joy.

Saturday evening, Michael and I were blessed to meet Emily at an event  to help collect toys for this upcoming Christmas season. 

We are a little late to be joining in the Toy Drive, but Emmett's Fight would like to help in collecting toys for children in the hospital for the Holiday Season!
Emily's Toys 4 Joy collect's toys for 5 valley Hospitals:
Phoenix Children's Hospital
John C Lincoln (Mendy's Place)
Scottsdale Healthcare
Banner Thunderbird
Banner Cardon Children's

 Emmett is a veteran of two of these great hospitals!

We are asking for all those who can and are willing to please help Emily give Christmas/ Holiday gift's to the children in our local hospitals here in Arizona.
The toys need to be new and for the age's of 18 years and younger.
Toy idea's:
Stuffed animals
Arts & Crafts supplies
 Emily's Foundation has many drop off locations city wide including Tuscan.  For a list of drop off locations please click HERE
 Emily's Toys 4 Joy has a Wells Fargo account for those who might like to donate out of state.

The Toy Drive ENDS October 30th!!!
Ahhh! Only 2 days left, but we are hoping to be able to give back and would love for you to join us too! For those friends and family in our area, I will have a drop box on our front porch until Tuesday evening. 

Thank you so very much!
I am so excited, for the holiday's are just around the corner!

Monday, October 22, 2012

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.

Friday, October 12, 2012

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!

Monday, October 1, 2012

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!!!!


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

Thursday, September 20, 2012

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!