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???