Easton's ERG Results

  On 2 am at Thursday May 29, 2914 Ronnie and I, both are laying in bed searching the internet for some type of answer or cure for Easton.
  Two weeks ago we traveled to Children's Hospital of Atlanta where they preformed an ERG on Easton's eyes in hopes that we would have some type of answers for Easton's retinal issues. We were so anxious and couldn't wait to see how the test went hoping it would confirm that all the doctors had been wrong and there was in fact nothing wrong with Easton's eyes or perhaps that it was something small. Easton did amazing for the test and his sleep apnea didn't affect his breathing at all! We were over joyed and left the hospital not knowing what would happen next! The doctors informed us that the test results could take up to 1-2 weeks to get back.
  Not a day went by that I didn't check my phone a thousand times a day to make sure I didn't miss a call! I know the receptionist must have thought I was crazy, because I called every day just in case they might have heard something and forgot to call.
  A week after his testing the doctors decided that it would be best to preform a muscle surgery on Easton's eyes. This would help prolong his central vision and would help keep him from "giving up" and continue to use his vision. Easton's eyes were pretty bad and it took the maximum muscle tightening possible to straighten his eyes. It was a very horrific sight to see as a mother. Something I was not prepared for. Easton's eyes were solid blood shot and blood had been seeping from his eyes in the place of tears. I couldn't look at Easton without feeling sick to my stomach!
   The next day we woke up to find Easton's eyes appeared to be straight. For the first time in his little life he could make eye contact with us!! He also started doing things he had never done before like watching tv, ramming his dump trucks into the crib, and crawling all around the house without crying out to be picked up! He also appeared to be a much happier baby!!!! Even with the pain of surgery and the stinging of the constant eye drops Easton was mostly happy and smiling. I have never been so happy in my life!
   My baby had just had surgery about 3 weeks prior which seemed to cure his airway problems he actually ate baby food without choking and he had been progressing with regular foods. His monitors seemed to beep less and less at night. He wasn't aspirating as much on liquids and he had started using a sippy cup and would smile after he took sips, almost to say, "look mommy and daddy I took a sip aren't you proud?". The sleepless nights were all beginning to feel like a thing of the past! I was certain that his sleep apnea had gone away and that his vision had greatly improved and that he would be the exception! Easton would overcome every problem thrown his way! I even delighted in victory as one of Easton's therapist informed me, that, as extreme as as Easton's sleep apnea had been we were lucky that he was alive and hadn't died in his sleep. This was something we had heard numerous times, but this time I already knew how blessed we were and I was no longer scared, because I know Easton has overcame it this time.
   I had never been so confident in my life that Easton was going to lead a normal life. Maybe I was too confident superman would be just fine. Reality quickly set in when we received a phone call about Easton's ERG results.
   Easton has a form of Cone and Rod dystrophy. We won't know the exact type until we receive genetic testing next week. The only definite answers we have are that, we don't know what the future holds for Easton's vision and that there isn't a cure. Another thing for certain is that it leads to blindness wether it be 5 years from now, 19, or even 20 years from now. They all have the same outcome, others are just more rapid than others.
  So here I am again questioning my faith pleading with God to have mercy on my child. I am having a hard time feeling like we are being punished for something. No one can describe the amount of hurt I am feeling inside. All I want to do is rip my eyes out and hand them to my son, because I've seen enough beauty in this world to be content and he deserves that same opportunity. The problem with that is there only one specific part of the eye can be transplanted and it isn't the part Easton needs. So ruining both our eyesight wouldn't give me any answers.
   My job now is more apparent than ever. I want to see the day they have a cure for this awful monster destroying lives. I want to spread the awareness on Cone and Rod dystrophy and encourage people to get involved with the Foundation Fighting Blindness. I am determined to find a cure for my son and not to let this ruin our lives. Mark my words, I won't stop until I have answers for my son.

A letter to my superman

Easton,

   The conversation with your retina specialist plays over and over again in my head like a broken record. His first words were I'm sorry I don't have answers. I knew then that I wasn't going to like what he had to say. I felt my heart sink to my knees as he told me that he didn't know the condition of your eyes or what you could or couldn't see. He assured me that they would do everything imaginable to figure out what was going on and that after your ERG we should have some answers.
  For every night and day after that I continued to search the internet for answers clinging to hope that this is all a mistake. I found myself reading things that weren't so promising. I was constantly debating on which prognosis would be the lesser of evils. I can't sleep until I have answers for you.
   It breaks my heart to walk in your room and say your name and find you frantically looking around to find me. Most days you cry if I leave your sight or touch. When we go places you constantly want to feel for me to make sure I'm still there for you. Simple tasks are becoming harder and harder with you in my arms and I find myself overwhelmed with guilt if I sit you down to take care of things knowing you can't see me. We fight daily to keep your glasses on and you're constantly rubbing your red rimmed eyes and crying out in pain. Knowing there is nothing I can do for you destroys me inside. Whoever said patience is a virtue, couldn't be more correct. I'm learning every day that things aren't going to be easy and I have to remind myself to be patient. My patience is always being tested.
   Your Dad and I are doing everything imaginable to get answers for you. Your Dad sacrifices so much to work out of town 7 days a week to make sure he can take time off to come to every crucial appointment and be there for you and me. He works hours in and out to make sure we have the money to get you the best treatment possible. Without him I wouldn't be able to stay home with you and give you my complete and undivided attention. You deserve nothing, but the best and that's what we'll always provide for you.
  Last night I couldn't sleep so I snuck into your room to watch you sleep. Over the noises of all the machines running in your room and all the cords strapped to your body you lied there so peacefully and angelic. I sat in the rocking chair hoping you'd cry out for me so I could steal you away and bask in your beauty. You are amazing. You have taught me so much about life in such a short period. I am forever grateful for you. I've learned what true love and compassion truly is. You've shown me the true defention of strength. You always have the best spirit and a stranger would never be able to fathom all that you have going on, because you never fail to have a smile on your face or a twinkle in your eye.
   As the date of your ERG quickly approaches I want you to know, that no matter what happens I promise to fight for you. You are a miracle and you are loved more than you could ever know. Even if you were to go blind it wouldn't change a thing or an ounce of my love for you. But I know you'll be fine because I am determined to never lose faith and I know God can heal you. Just know that I will always be here for you, as your biggest supporter and number one fan. I will always be on your team and will guide you and comfort you in every step of the way. I love you to infinity and beyond my little superman!!

Love,
       Mom.

P.s. "The best things in life cannot be seen or even touched, they must be felt with the heart."

Easton's Story

We were blessed with the greatest surprise blessing on July 16, 2013. Our lives as we knew it would all change. Easton was born premature (4weeks early) due to my battle with preeclampsia. I had been on hospital bed rest as well as an extremely strict diet to keep my blood pressure down, but no matter how hard we tried my blood pressure just kept climbing it was then that my doctor decided to go ahead and induce me and we welcomed our beautiful baby boy at 4:23 am on July 16, 2013. From that point on everything has been a whirlwind! Easton stayed in our room with us for about 30 mins as we shared our bundle of joy with all our family.  Soon after all the doctors and nurses came and whisked Easton away. He was admitted to NICU because the nurse had noticed he had been aspirating. I was a nervous wreck from then on out it felt like I was living in a bad dream. NICU is an experience that most (including me) are not prepared for. I had to wait until I could lower my blood pressure before I could see Easton. So for 3 days his father would rotate between the two of us and video Easton for me so I could see him. When I finally got to see my sweet boy he had been incubated, put on oxygen, and a feeding tube! All I could do was cry he looked so helpless and I felt like he was scared because he had been inside of me for so long recognizing my voice and now here he was in a box all alone with wires. I broke down and cried for a while until I realized I had to be strong for him! Over a week we spent sharing a twin sized couch bed in Easton's NICU room so we didn't miss a thing. We had left to go home and shower when we got the call that Easton could come home! I've never been so excited in my life! I didn't even think to question the fact that he hadn't been off oxygen or a feeding tube for a full 24 hrs and how he was going to handle life without it. All that stuck in my mind at that point was bringing my man home with us so we could be a family. Everything seemed fine for a couple weeks until we started noticing Easton making crazy noises while eating and gasping for air at night in his sleep. For many weeks we often didn't sleep and would sit up at night to watch him sleep in case something were to happen, until we could be seen the proper doctor. As soon as we saw the pulmonologist they assured us that Easton looked completely healthy and the noises he was making would be something he'd outgrow, but they would run some tests just to be sure. It was then that Easton failed every test that was given, aspiration was detected in his swallow study and his sleep study showed that he would quit breathing an average of 150 times a night. Then everything happened so fast they did several scopes and diagnosed Easton with laryngomalacia a common thing in premature babies. It is the underdevelopment of the floppy tissue in the airways that collapses when he inhales. The one problem with Easton's condition is that he is in the rare 1-5% of babies that have a life threatening case of it (because of the severity of his sleep apnea) the doctors opted to do his Surgery as soon as possible. Easton had his first heart breaking Surgery at 3 months! We were ecstatic and were hoping this would fix everything. We were disappointed to find that Easton failed his next sleep study after surgery and it was much worse than the first he would stop breathing an average of 250 times a night. They then decided to put Easton on oxygen and a sleep apnea monitor. We decided to do our own research and decided to get a second opinion at the aerodigestive team in Atlanta. While waiting for our appointment there he had been to numerous drs and had several hospital stays and Easton was also seen by a ophthalmologist who determined he had some serious eye issues going on put him in glasses while we monitored everything else. Before we left for Ga to go see the aerodigestive team Easton has a regular follow up eye appointment that took a turn for the worse. Easton has a rare eye problem in both eyes. Both his retinas were discolored and appeared to have several dark spots. What did this mean? Easton either has tumors behind his retina or a form of retinal dystrophy where the central vision shuts down and leads to blindness.  On top of this he needed surgery to fix his muscle control in his eyes. I felt like my whole world was shattered I didn't want anyone to know. I didn't want to talk or speak to anyone I just wanted to grab my baby hold him forever and cry for the rest of my life. I was angry inside and second guessed my faith because how could my child out of all the children in the world have so many problems?! Why him?!? Not that I would wish this on any one, but I couldn't help but to be angry inside. I dreamed of a normal child who had an amazing normal life with no complications while I was pregnant. Because as a parent that's all we really want for our child right? Then I started to think what is normal? Easton is anything, but normal in fact he's extraordinary and I am more than blessed to be his mother! I couldn't be strong for Easton if I was busy being angry inside. Easton needed me to be strong for him more than ever so, we as his parents do what it takes to hold it all together for Easton because we are all he has. We can't control any of the outcomes of his health issues, but we can control what kind of life he will grow up having! One full of love laughter and happiness! One where we focus on the positive things in life like how blessed we are to have each other and make the best of everything! We finally made it to Atlanta where they ran several tests that we are currently awaiting the results of, but they also preformed another airway surgery and took his adnoids out. And by chance (by God answering our prayers) we received word from Easton's eye Dr in baton rouge that one of the top 10 retinal specialist in the nation would be taking a look at Easton's retinas while they put him under to run other tests and preformed other surgeries. Did I mention that this dr only works Mondays and it was all by chance that Easton's surgeries were scheduled for Monday's the only day a week he works? Tell me that's coincidental. I think not. He confirmed that Easton does has severe problems in his retinas but that He wasn't quite sure of what, but that he and his colleagues would be performing every test possible to diagnose Easton and get him some help. Easton's surgeries and procedures all went well and he stayed in PICU for a full 24 hours. He had a very rough time after surgery and got some pretty bad infections but now he's starting to act like his old self. So on our 8 hour trip home I am writing this blog to share our experiences and inspire other moms with babies that have conditions similar to Easton or any conditions for that matter to never give up and stay strong! Its all Gods plan. We were dealt this hand for a reason. We were meant to be their mothers because they need us! I am lucky to be surrounded by a great support system full of amazing family! Including family in Ga who help make our stays in Ga completely possible and complete! They always are warm and welcoming and love Easton just as much as we do!