My Oar

This pic sums it up. These boys are my oar, my lifeline, my happy at the end of a workday and the kick that keeps me going. We, as mothers, all know that we could pull the Webster out and use almost all of the book to describe motherhood. It has been really long time since I have updated this blog and (lol) motherhood has helped with that. Evan is doing great! We are long past the surgeries and healing is complete. Dr. Reinisch and his staff are wonderful people that we were blessed to meet. We truly made lifetime friends during our journey. I wanted to also update our friends to let everyone know that the battle to get Evan a new BAHA (bone anchored hearing aid) is complete! I won the insurance appeal. Yes, you heard it... For all my fellow moms out there that are still fighting, it can be done. Please don't give up! We were having lots of issues with his old hearing aid such as: feedback, repairs, reprogramming and using lots of batteries for no reason. I know alot of the other moms are having the same issues as well and my suggestion would be to talk to your ENT, your audiologist and also your pediatrician. Get as much documentation as you can. Write an appeal letter yourself! Explain the reasons why your child needs a new aid. Why is the aid faulty? Is your child asking you to repeat yourself? Having trouble in the classroom? If so, have the teacher provide documentation of these issues. It will take some legwork but it will be worth it. I would like to thank Oticon Medical for their superior customer service. They have helped make the transition a smooth one for Evan. They have also given me a motherhood moment I will never, ever forget. The first morning Evan was wearing his new aid he walked into our bathroom and said "Mommy, my shoes make noise!" I hardly go through each day without thinking about this moment without smiling/crying. He is still showing my mom (as he taps on her kitchen floors) that his shoes make noise. This is unbelievable to me and I cannot wait to experience more new noises through Evan. I hope this shines a little light for those of you who are still trying. As moms, have to remember that we also, are the oars for our children and not just the lifeboat. Sometimes we have to make the waves :)

Home Away From Home

So it has been awhile since I have posted... For that I apologize but ALOT has happened. Evan's left ear reconstruction was on Oct 15th. The surgery went really well and the ear looks fantastic. Words could never express just how wonderful Dr Reinisch and his staff are! We went home after a week as planned. I washed the ear the first week and on the second week we washed it again. When I washed it the second week after being back home I noticed a large scab on the bottom lobe. Once I removed the scab I saw that Evan had an open spot on the bottom lobe of his ear and I could see the Medpor implant. This was due to a very active 3 year old and probably the cup rubbing against the bottom of the lobe. Just one of those things that happen.... So we are back at our home away from home, in Los Angeles. Evan had surgery today and the procedure only lasted an hour. He done really well in recovery and is finally sound asleep. We are not wearing the cup so it will probably be a long night for me. Keep Evan in your prayers for a speedy recovery and pray that the new skin used to cover the Medpor takes. I have prayed over him several times today. Sometimes I forget to only rely on God when I need him and he has reminded me of that today. I think we all seem to do that at times. Evan is such a trooper and Dr Reinisch has become his friend now. I remember back in May with Evan's first surgery and how terrified he was! He has gotten quite used to Los Angeles and still likes to go to his favorite place where he shared sweet times with his friends Luca and Olivia. We miss them terribly!!! As you can see from the pic I posted Evan now has 2 ears!!! Isn't God fantastic. He sure how showed me how miracles work and how blessed we have been. Remember to praise him, in good times and bad times :)
P.S. THESE PICS ARE ONLY 2 1/2 WEEKS POST OP!!!

Answered Prayers

Evan had his right ear reconstruction surgery on October 15th. This 2nd surgery went way smoother than the first. The surgery was approximately 6 hours long. Evan has done really well. We have ALOT of support and answered prayers. I am so thankful for each of you! Evan's vessels were working this time and the doctor does not forsee any complications. If you could see the HUGE grin on my face right now it would be contagious! Evan is napping now and woke up this morning with a shiner on his right eye. He can not open it but the doctor said this is normal 2 days out of surgery. I am still in amazement at how much I have been blessed by my 2 boys and just how blessed my life is. Evan has coped really well with this surgery due to an amazing doctor, his staff and the staff at Specialty Outpatient Hospital. They knew just how to handle Evan after surgery and that made everything so much easier on Evan. 2 years ago when we met Dr Reinisch I felt so defeated because I thought we would never raise the funds needed for Evan's surgery. How GOD has showed out!!!!! Evan will have one more surgery in April 2011 for revisions on both ears. Can you believe it???? Evan has 2 ears now!!!! All thanks to answered prayers.....

My Rock

'The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower.'
Psalm 18:2

WOW! Well, Evan's surgery on his right ear is scheduled for October 15th. We will be flying out from Monroe Regional Airport on Oct 13th. Our tickets have been paid for by generous donors. I cannot begin to tell you how blessed we are. I wake up each morning as if I am am a foggy dream. Everything has happened so fast. 9 months ago I remember sitting in a parking lot crying and feeling so discouraged because I knew that we could never raise enough money for Evan's surgeries and TODAY we have enough for his second surgery. I am still wondering if this is a dream. Evan's second surgery was not supposed to be until next year but due to scheduling conflicts we are doing it this year. His next surgery (revisions on both ears) is scheduled for April 15th. I have no doubt that God will provide and we will have enough for his surgery in April. It is so funny how things just work out. Evan will have his ear surgeries completed by the time he starts preschool. Just think - our goal was to complete his surgeries by the time he started kindergarten! His left ear is healing nicely and looks better every week. I will post pics soon. Thanks to everyone for standing behind us and praying with us. You have each in your own way blessed Evan and our family.

3 months post op

Evan is doing great and his ear is healing well. The surgery although emotionally draining, was totally worth it. Evan is now aware of his little ear and new ear. He is very proud of his new ear. We are preparing now for his right ear reconstruction surgery on October 15th. I am very nervous but ready to get these surgeries completed. Evan is such a joy to us and I am sooo glad that I have been able to share him with everyone. Thanks to all of you for your prayers and your contributions to the Ears For Evan Medical Fund. We will have the raffle for the 1966 Mustang this Saturday @ 1:00pm at THE SPOTTED DOG sporting goods store in Columbia. Good Luck to those of you that participated! We will have a poker run in Columbia at the end of October. I will post more info about this once the date gets closer. Please keeps us in your prayers. Especially pray that this surgery goes smoother than the last.....We need all the knee mail you are willing to give. :)

my amazing life

Well, we are 1 day from being 2 months post op. Evan is doing great. We went to our pediatrician yesterday to remove a stitch that has not dissolved and is causing some inflammation. Hopefully, in the next week we should see some improvement. His ear is healing up well but I just need some patience. We all need a little of that....
I will post pics in a couple of days. Aiden is so protective of Evan. He often tells him "watch out for your ear". I love being the mother of these boys. They are the best thing that has ever happened to me. My life is amazing and everyday they show me just how precious life can be. I have had alot of people tell me that they are sorry about Evan and they way that he is. I hate that because Evan was made as God intended. He has taught me alot and has touched many lives in the process. We have such an amazing life and sometimes it is a rollercoaster but we just sit down, put our seatbelt on and enjoy the ride.....

Mindful

It has been awhile since I have posted and have alot of catching up to do. I have titled this 'Mindful' for alot of reasons...
I am mindful of the everyday things that we all take for granted. With that being said we are so glad that we are finally home!!!! Evan's 1st stage ear reconstruction surgery was done on May 18th. Due to complications unforeseen he had a second surgery and we were in Los Angeles for almost a month. Evan is doing well and his latest and greatest pic is 42 days post op. I want to thank the Perre family and Angela and Sarah Sabal for being such a great support while we were in Los Angeles. We will never forget your kindness and hope we have made a lifetime friendship!!! Evan has been a trooper and is now acknowledging his 'new' ear and his 'little' ear. He did not do that before surgery. Tonight he was actually rubbing his little ear and looking at Aiden's ear.We are finished with the 2x daily bandage changes and are just applying antibiotic/steroid creams now - yeah!!!
The surgery was very hard emotionally because at times I wondered if I had chose the right path. God opened way too many doors for this not to happen. Everyone that helped contribute in anyway whether it was financially or with words of encouragement should be mindful that they have paved an easier life for our son. I could NEVER in my lifetime tell each of you how much this means to us.
Having Evan in our lives has made each of us mindful of life and the way you live it.
I have had several people that have met Evan and have expressed how much he touched them and made them walk closer to God. This is what I love. Evan and Aiden's life thus far is my testimony. Even though there are days when I feel God is far away I can kiss my boys and know that he is right here with me. So.... what are you mindful of today???

My baby has a new ear!!!!!!!

Well, if I did not have any patience before God is sure showing me how to be patient now. Evan is up ripping and running like any 3 year old. He does not even seem to know that he has his new ear unless we point it out. We went to the doctor yesterday and part of the ear that we were worried about has healed and worked well. Part of Evan's old ear was used to help build the bottom part of his new ear but that part did not take. Sometimes this happens but it is completely fixable. Evan will have another surgery next Thursday. This will only take about an hour and they will remove the skin that did not work and perform another skin graft. Dr Reinisch and his staff are WONDERFUL. If you are going to be a future patient of theirs you will be very impressed. Despite the bandage changes, Evan was giving Dr Reinisch high fives and telling him 'thank you'. He is such a trooper. I am very blessed to be in Evan's life and walk this journey with him. Although we are VERY homesick and emotionally exhausted I have to look at the whole picture. My baby is getting his ears and life for him will be better. For all of our friends and family out there - WE MISS YOU VERY MUCH AND CAN'T WAIT TO BE HOME!!!!

God is good ALL the time....we just have to wait for his time...

LA

We go to the doctor today to get Evan's bandages changed and his head washed. They have completely shaved his head so he is not my little Goldilocks :( but willing to give that and everything else up for him to get his new ears. He has been such a trooper during these past couple of weeks. We are sooo homesick and just praying for a good report tomorrow. I will keep everyone posted...As far as LA goes there are lots of things to do and see but nothing is like being at home :)

peace

Today has been a good day for Evan. We are 2 days out from surgery. We went to the doctor and Evan's drain tubes were removed. He is such a trooper. You honestly would not belive how fast he has recovered. I got a glipse of his ear today and it is very swollen and still has the packing. I still have hope that the vessel will work and the surgery will be a success. Please continue to pray for us. I know the prayers are working because I feel at peace today. Somehow I know that everything will work. I doubted putting Evan through this but God led us here and I know that it was for a reason.
Evan made a new friend today. Luca is a 4 year old from Australia that had surgery about a week before Evan. We met Luca and his family and had ice cream at the Disney Soda Fountain Store. Such a great family and so inspiring to me. If you get a chance you can check out his blog @ www.lucajourney.me. It is eerie how similar he and Evan favor. They made our day great and I hope that we made a lasting friendship. Evan was so funny tickling Luca today. I will post pics of them soon. Good night all and say a little prayer. Can't wait to come home .......

Prayervan

Prayer is a powerful thing. Especially if we all join together....
Evan's surgery was a little over 11 hours long. It was a very long day for all of us and especially for Evan. We got back to the hotel after midnight. Evan woke up about 4 this morning still groggy from the pain meds they gave him. He is not eating a banana, fruit loops and a muffin for breakfast. Despite his small frame this child can eat!!! Please continue to pray for Evan. Pray that he will have a good day today and will have minimal if no pain. He is such a trooper. The doctor said one of the blood vessels that supplies blood to the new ear was not a good vessel. They worked on it for a long time, trying to warm it. He did get it to pulse but it is still not flowing the way Dr Reinisch would like it to be. Pray for this vessel to flow freely and supply Evan's new ear successfully. Pray for all of us as we continue this journey. Pray for Dr Reinisch as well because I know it was a long day for him as well. Pray hard for Evan to recoup well and for the surgery to be a success. Thanks for the contiuous flow of prayers and thoughts....

Evaney

Here it is 3:10pm in Los Angeles and we are still waiting for Evan to come out of surgery. I have been a emotional wreck all day and for my friends out there I forgot to put my big brave girl panties on. (or if I have them on they are not working). The nurses have been really good about giving updates. Around 12:30 Kay (the nurse) came out and said they had not started the actual procedure. They took Evan back for surgery at 7:30 but the preparation for surgery takes a long time. Thank goodness I brought alot of busy work. We have met some really nice people here as well and I am documenting everything so that Evan will know just how much he was loved. I will keep everyone updated once I get the updates.

we r here!

yeah! We made it and the traffic was not bad. Hope that once we venture out tomorrow for preop and a trip to the grocery store it will be good. I am soooo nervous about Evan's surgery but know that he is in God's arms. I have so many mixed emotions right now but all of you have helped ease my dreadful thoughts. I will keep you posted... love u all

Life Story

What is going on in my mind now - only millions of things.. Such as how did May get here so fast? I can believe just 4 months ago I was saying that we would never get the money raised for Evan's ear reconstruction. Here we are leaving in the morning for Los Angeles. :) I am so amazed at God's work and how precious Evan's life story has become. I foolishly questioned God when Evan and Aiden were born 2 months premature and we sat in the NICU unit for about 2 months. I am not going to lie, I actually lost my faith during this time and at times turned my back on the one that was responsible for giving us all life. I am so excited now at how Evan has used God to heal and touch lives that otherwise may not have known HIM or maybe had been drifting - such as myself...I am thankful for not only my friends but the prayer warriors at First Baptist Church that have been so devoted to Evan and my family. I am living my lifestory with Evan and Aiden and now know God had his purpose all along...

Psalm 116:1 - I LOVE THE LORD, FOR HE HEARD MY VOICE; HE HEARD MY CRY FOR MERCY.

It's Here

Just wanted to post a quick note to everyone while I am busy packing. We leave in the morning for Los Angeles. It is finally here..the day I have have been anxiously awaiting and dreading at the same time. I have alot of mixed emotions but know that God's hand has been with us through all of this. My heart is filled with joy because of the way that God has used Evan to touched others. I will post again before we leave. Please keep us in your prayers.

Countdown

We leave in 12 days.... 12 days... Oh did I say that we leave in 12 days? I am very nervous but know that Evan will be well taken care of. God has really worked wonders with us and I know he will not fail us now. For all of you reading this blog - THANK YOU! Please continue to keep us in your prayers. Pray for me having a 3 year old on an airplane with a 3 hour layover in TX - lol. But please don't pray for me to have patience because the LORD will show me just how much patience I have - been there, done that! I will continue to keep everyone updated on this blog and Facebook. You can look us up on Facebook at Earsforevan Holley. Thank you for loving Evan :)

Joy In My Heart

As we get closer to Evan's first surgery date I think back to the day that I said that this would be impossible. I remember crying and physically having a heartache because I could not fix my baby. Well, the impossible is happening all around us. So far we are halfway to our goal of paying for all of Evan's surgeries. We could not have done this without our friend, family and the wonderful community we live in. Each day I receive a call from someone wanting to help. I was reading on Mercy Me's website today and they have a new album called "Mr. Lovewell". The whole concept is basically to love others well and make a difference in someone's life by showing them love and sharing the word. Each of you are our Mr or Mrs Lovewell. You have made such a huge difference in our life and we will always pay that love forward. Thanks for loving us!

HEAR WITH YOUR HEART

Just wanted to update everyone about our progress. We are leaving for Evan's first surgery on May 16th. We will be in Los Angeles for about 2 weeks. I am very nervous and beginning to doubt the decision we have made for Evan. They all tell me this is normal... BUT - How do you decide to make physical changes to your baby who you see as perfect? I ask myself this everyday...I have gotten into the bad habit of kissing his little ears and I will miss them - BUT I have to remember I am giving my son the chance to be normal and miss all the stares and comments made about the ears that will soon be a thing of the past. So for now, I am hearing with my heart which tells me to do everything in my power to get EARS FOR EVAN.

Please see below for a list of April fundraisers:

April 10th - Centric Federal Credit Union/Thomas Rd in West Monroe
9am-1pm we will be selling lemonade and sweets!

April 13th - Come eat with us at MCCALLISTER'S on Tuesday, April 13th from 4pm-9pm
10% of all proceeds made will go to EARS FOR EVAN.

April 24th - Come see us at THE MARKETPLACE on Splane Drive in West Monroe
for their SPRING FLING MARKET. You can shop for unique items and eat a
hot dog while supporting EARS FOR EVAN.

May 1st - come see us starting @ 11am at the West Monroe Wal-Mart for hamburger
plates. You can preorder by calling or emailing me. We will deliver orders
of 10 or more plates. Plates are $5.00

Once again thanks for your support. Please keep us in your prayers.... hug from the Holley family

Busy, Busy, Busy

Thanks to all our followers for visiting the blog! We are still in the process of raising funds for Evan and still wheeling and dealing with the hopsital and doctors about our prices for the surgery. We have ALOT of fundraisers for the month of April.

April 10th - Paige Parks and friends will be selling Lemonade and Cookies at Centric Federal Credit Union at the Thomas Rd location. Please stop by and visit!

April 13th - Please eat at McAllisters in West Monroe from 4pm - 9pm. 10% of the proceeds made from this time will go to Evan's Medical Fund.

April 24th - We will be selling hot dogs and the Ears for Evan necklaces made by LEADAISICAL DESIGNS. This will be at THE MARKETPLACE'S FIRST ANNUAL SPRING FLING. If you have not heard about THE MARKETPLACE yet stop by and say hello to Wanda. It is located on Splane Drive behind the Hogan Shopping Center which is across from SuperOne in West Monroe. This is a community event where you can shop and eat for a good cause!

Please help us by spreading the word about these fundraisers. I hope to see you at THE MARKETPLACE!!!! Thanks to everyone for your support, prayers and love. Each of you that have helped with fundraising and contributions have a special place in our hearts and we will forever be grateful. You have made a difference in my son's life and I will always love you for that :)