Bilateral Strabismus Surgery

Yesterday Connor had   Bilateral Strabismus Surgery  (eye muscle surgery.)  I've gotten lots of questions and so I decided try to answer them all here.

Strabismus surgery is surgery on the extraocular muscles to correct strabismus, the misalignment of the eyes. With approximately 1.2 million procedures each year, extraocular muscle surgery is the third most common eye surgery in the United States.


Connors eye muscles are weak causing his eyes to go inward when he looks at things. Normally just one, but both are weak they just happen to not usually go inward at the same time.  I know what you might be thinking, you've never noticed right?? We have grown so use to it that we dont really notice too, however after seeing the eye doctor I went back and looked at photos and yep there it is almost every time. Below are a few examples, though most times it was very subtle it was always there.

       One thing I want to make sure everyones knows is this was not a cosmetic surgery. Honestly Connors eyes never bothered me one bit, until we saw his eye doctor and I realized it could cause big trouble if left unfixed.  What happens is when one eye is straight and the other turns in your seeing two different pictures, no problem because the brain is so amazing that it learns to ignore one eye. The problem is if it ignores the one eye for long enough it could think it needs to always ignore that eye. Meaning Connor would only see out of  one eye. First we tried Patching to see if that would help.

 We  patched for three months before going back to the eye doctor.  We alternated eyes patching for two hours everyday. Our hope was patching would strengthen the eye muscles enough so that he wouldnt need surgery. Patching helped and strengthened the eyes alot, however it didnt fix them. So we scheduled surgery for the day after Christmas. The thought process behind this was he wouldnt miss school and I wouldnt miss work.

On the morning of surgery Connor was his happy self. Once at the hospital he knew something was up. Bless his heart hes been to Childrens Hospital enough to know if you have to go in a room with a actual hospital bed, its not good. He mostly laid around but he would literally fidget with his hands the entire two hours we waited for his turn for surgery.

  We met the anesthesiologist  and he filled us in on the risk and procedure. He explained that with Down Syndrome there is a increased risk for the heart rate to slow down. ( Which we knew because  hes had so many surgeries.) He then explained that with this type of surgery there was a even bigger risk that his heart rate would drop. So they decided with our permission they would like to go ahead and give him the medication to stop this just in case it were to happen. Of course this made us even more nervous than we already were and we absolutely wanted him to receive the medicine.

  They brought Connor " happy juice" and within minutes he was playing with the sheet on the bed and laughing hysterically. That stuff is truly amazing!  They came and got him and he went without a care in the world.

Then we headed to the waiting room to wait. It took about an hour, the doctor then met with us and explained that everything had went well and as soon as he was awake they would call us back.

Within 10 minutes they called us back. We went in a empty room and waited for him. All of a sudden we heard ear piercing screaming sobs and we both looked at each other cause we knew it was him.They rolled him in the room as he threw himself all over the bed while he screamed and cried ( his eyes were shut but he was very much awake.) They told me I could get him and I scooped him up and rocked and talked to him, but nothing helped. He would scream and sling his head back toward the floor. His tears were pure blood and they poured down his checks and I had to inwardly beg myself not to breakdown .  I gave him to Daddy who tried to comfort him too, but nothing helped.  Finally we played childrens songs on you tube and he stopped crying. The nurse brought us apple juice and said as soon as he drank they would take the IV out and we could go. I asked him if he would take a drink he screamed " nah". We tried to make him take a drink and he screamed and fought us. The room we were in was only separated from the other rooms by curtains and all the other kids were waiting to be took back for surgery and I could tell that the nurses wanted us out of there and I couldnt blame them one bit.

 Finally as I wiped away his bloody tears I whispered to him " If you'll drink this apple juice they will take this out of your arm and we can go home." Connor opened his eyes a little and pointed toward the cup. I held the cup while he guzzled it. ( Tell me again how he doesnt understand.)

Rag we wiped his tears with.

The nurse came in and took the IV out and we signed all discharge papers and left while he continued to cry his eyes out.  He sobbbed most of the way home until he finally fell asleep. Once home we laid him on the couch with a blanket and pillow and he slept, woke up and cried, slept then woke up screaming and this went on all evening. We tried to get him to eat and he refused. We had to hold him down to give him tylenol. He was so pitiful and he broke our hearts.  He never ate and he never opened his eyes. We held him and rocked him but nothing comforted him.

 I put him to bed around 9pm. He slept until 8am this morning. I went in to get him up and he reach for me but his eyes were still shut. I took him to the kitchen and asked if he would like to eat, he said " nah". I told him he'd feel better if he did. He ate with his eyes shut and finally he opened his eyes and even though I knew they would be bloody red, I held him tight while I sobbed and he cried right along with me, and I told him that this was gonna help him see better or mommy would have never let them do it. I told him that everything was gonna be ok. I then gave him a bath and his spirits changed.

  My happy boy was back. He danced and played. We went back to the Doctor so he could look at his eyes.

  He said they look exactly how they should and he saw no signs of infection.

  We go back on Tuesday so he can check them again. The sutures in them will dissolve on there own.  They will stay red for up to two weeks.  Until his eyes heal they may still turn in some, but as of now he believes the surgery was a success.  We are so thankful and grateful for East Tennessee Childrens Hospital and Dr. Gitschlag!!!!

  Well would ya look at that.....Straight eyes and a smile!!

Christmas 2017

We seriously had our best Christmas yet!!! Last year was Connors first Christmas home, but he was very sick and was just getting over pneumonia and was dealing with reoccurring ear infections while he waited for his upcoming surgery to have tubes put in his ears.  So I have declared this year our "First Good Christmas". It was amazing to have my boy his spunky self on such a joyful day.  We spent time with both our families and it truly was a great day of celebrating!!!

First look at his present!!

He was so excited!!

Family picture Fail!

Joy awaits you.....

If God called you to do something BIG, would you follow Him??
No matter how scary.
No matter how unimaginable the journey seemed.
No matter what it looked like financially.
No matter if you knew it would change your life forever.
No matter if you knew it would be a long hard road.
No matter if you knew it was unpredictable.
No matter who agreed.
No matter if you didn't get the encouragement and support from those you love most.
Would you do it anyway, Would you follow Him??

    First off let me say that I do not share our story to give us any glory, because ALL the glory belongs to JESUS CHRIST OUR LORD.  No, I share our journey for those who are right there where we were. Those who hear Him calling, and are filled with the same unimaginable fear we were. Those who cant comprehend how they will make it work financially. Those who arent sure they are ready to give up the life they know now. Those who arent sure they have what it takes for the hard road ahead. Those who arent sure they will have the support they will need. I share for them. Because I want them to know that when they press forward through the rain the rainbow is so worth the storm. I want them to know that so much joy lies ahead after the heartache and pain. I want them to know that God foots the bill when its His plan. I want them to know that life will indeed be different, but it will be so much better. I want them to know that It will all be worth it. I want them to know that Gods plans are for our good and His timing is indeed perfect.

And thats why I tell everyone what God did for us. How He took two ordinary people who didnt have much but had alot of love to give. Two people whose hearts ached from their empty arms.

And  across the World He saw a  beautiful boy who was a orphan. Who needed those loving arms. Who needed two people with alot of love to give.

And He knew He had the perfect plan.

Still God gives us the freedom of choice. We could have said no. We could have allowed money or fear stand in the way.

But because we didnt that beautiful boy is not a orphan anymore and those empty arms have never been so full.

Im  not telling you to adopt. Im not telling you to plunge head first into the unknown. But I am telling you that when you follow Him, even when its scary, even when you cant comprehend his plan, even when it seems so unattainable that joy awaits you and that you will never walk one step alone.

Follow Him, the journey may be hard, the journey may be long, You may not have much support, but you'll have Him and that's all you'll need.

Joy awaits you when you follow Him.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:38

Why we didnt do Santa this year.....

 

Last year I took Connor to the mall and stood in line to do the whole Santa thing. I'm still not really sure why, but I just thought I was suppose to. Its what moms do right?/ Every year you have your childs picture made with Santa whether they like it or not.

    Its true that when we brought Connor home I had no idea what I was doing. No one can tell you how to be a mom, sure you can read the books and listen to others experiences and oh yes ALL the advice you will be given. And yet still it cant really prepare you. But whats amazing, what kicks right in. Those instincts. Oh those Mama bear instincts. Its like boom there they are. My opinion is thats exactly how God wired us. He purposely made us to just know what to do. Sure there will be plenty of times you feel like you have no earthly idea what your doing. But ya know the common sense things, the how to literally keep them alive day to day those come natural. My point is sometimes though we let trends get in the way of those instincts, and thats exactly what I did last year when I dropped my beautiful boy into santas lap and even said to santa " we will have to hurry this will probably get ugly". I know that its all in fun. I know that its not hurting anyone. I know that we will treasure the picture forever, he may even look back and laugh about it one day. However its one of my biggest regrets as a mother. That moment where I went with the trend  cause thats just " what you do"  and I did something that I went in knowingly would upset my son. Who does that???

So what have I done differently this year......

This year we didnt do Santa. No waiting in line at the mall. No making the guy in red a big deal at all. Theres no trace of him in our house and Jeremy and I did not take him anywhere he was, Obviously he saw him at school and a couple other places, and we are in no way trying to wipe Santa off the map. We just wont push him because Connor gets upset and is definitely  not a fan and thats ok. Its ok if that changes and its ok if it doesnt, But what I will not do is go with the trend.

Maybe one day he will like Santa and maybe he never will. Maybe it will never be a big part of Christmas for him and maybe he will be obsessed with him in a few years. We are letting him lead the way and are not making the jolly fellow a part of our Christmas traditions anymore.

I do want to say that this is totally our thing. We are in no way knocking anyone for making Santa huge at there house. Cause its fun for the kids, and its such fun memories you will all always look back on forever. And honestly thats something i have come to love about parenting is seeing all the different styles and techniques . Cause seriously yall we dont have to all be doing things the same to be on the same team ( the we love our kids and are doing our best team). After all we are all raising completely different kids, what works for one wont work for another. Lets all support and be there for each other. No more feeling like you have to go with the trends unless you want to. Trust those instincts and dont let anyone tell you your doing it wrong ( unless you are harming your child, in which case you are indeed  doing it wrong).

And this my friends is why we didnt do Santa this year. 

His Timing is Perfect

His Timing is perfect.

I was so tired of hearing that. Over and over. I knew it was true. I knew God was good, but somewhere along the 7 year wait I had grown weary. My heart was a constant state of broken. No matter what there was this deep ache for something more. When would it be my perfect time.  I prayed and prayed. I was patient. impatient, I was hopeful, I was sad, I was angry. I was so many emotions and yet I was empty.

Then one day it happened. We started the adoption Journey. We saw his little face. We had hope, we were happy. As the time grew near and we entered into the last weeks of waiting. We heard from so many friends and family by Christmas. I hope you get him by Christmas. And thats when it happened. I wrote those words and I believed them " His timing is perfect".  I dont know why I knew or how I knew, but I knew we would spend that one last christmas without him. I knew that it wasnt time yet.

I'm not sure why January was our perfect time, but I know everything came together. I know that on January 11th when I pulled him into my embrace that the stars aligned.

I know that nothing ever felt so right. I dont know why a child born to another woman is my son. I dont know why I had to wait 8 years for him.  I dont know why I didnt get to meet my son until he was three years old.

I dont know why it took time for him to accept my love. But I know what it felt like the day he reach over and took my hand for the first time.

  I dont know why it took so long for me to become a mother.

 But I know how it felt after so many years of waiting. I know that it makes me so much more thankful for every single moment. I know it
makes it all so much more special because it didnt come easy.

 I know that because of how it all played out I am a firm believer that those four words are so true.

"HIS TIMING IS PERFECT."

Just a quick update

  Hey guys sorry its been so long, but life has been crazy for a little bit. My cousin Lacey and I were able to come up with a plan to surprise my parents with all household items they needed. I could never thank those enough who donated and bought items!! They moved into a home they will be renting for the time being which is two doors down from us. While this is a huge blessing and I appreciate what people mean, I cringe everytime someone says im so lucky or they are so lucky. However lets talk about the good not the negative.  Its amazing to see how God has worked things out and took care of them each step of the way. I am anxious to see the rest of his plan unfold. 

One other thing going on recently is I finally broke down and saw a dentist. My tooth has been broken for awhile, but only recently has it been painful. It went from no pain to excruciating pain  what seemed like overnight. I literally couldnt even drink water, its been horrible. So Ill go get a root canal ( I cant have it pulled cause its in my smile line) and then everything will be fine.  Life never seems to go the way we think huh.  My visit revealed I have gum disease. I have significant bone loss. I have 4 cavities. So I will have a root canal, then get a crown, have my cavities filled, and then root therapy will begin.  They will numb my mouth and go in and clean out the bacteria from the roots of all my teeth.  I cant remember how many sessions Ill need, but I will go every three months for awhile after there complete and eventually I will be released to every six months.  Im so thankful for good dental insurance, but We will still be paying a huge chunk of money. Health problems associated with Gum disease are  diabetes, heart disease, stroke, to name a few.  Anyway please be praying for me.

Connor is doing well. He is fighting a cold right now, but were hoping he will kick it soon. We saw the ENT and his tubes had came out. As long as he doesnt get a ear infection we wont need another set, so were crossing our fingers. He complied perfectly for his hearing test and aced it. This was huge ( the complieing part) I was so so proud of him. His surgery for his eyes is coming up quickly. We are praying that all will go as planned and honestly were just ready to get it over with. 

Not much else going on in the Malone household. We had a good Thanksgiving and I enjoyed my first holiday break at my new job and am now counting down to Christmas break. Getting to spend all this extra time with Connor is such a blessing. I cannot tell you how thankful I am to have this new opportunity. God is good!!!

All is not lost, I still have my daddy.

    Most everyone knows on November 7th 2017 my parents home was destroyed in a storm. We originally thought it was a tornado, but have since learned it was straight line winds and a microburst. My Dad was home at the time and he went through what I know will probably forever be the most scary, devastating moments of his life. The doctors are saying he is a miracle. We know God had his hand on him that day. I would like to tell a little of his story without his permission, but hopefully I wont get in too much trouble. I feel its important so others understand how badly he needs prayers and how we need to be so very fragile with him.



  Dad has been in so much pain due to a abscess that recently came up on his lower back. He went to the ER on monday ( November 6th). He was given pain medicine so on Tuesday Morning he was in bed sleeping.  He said he woke to the entire house shaking and he knew he needed to get somewhere safe. He tried to get to his feet when he was slammed to the floor. The next thing he knew he said he heard what sounded like a explosion and the walls were falling down on him. He said the walls just kept coming ( we now know that the house likely rolled possibly several times as it was around 15ft from where it originally sat.) The next thing he remembers he was looking at the sky and could see my uncles house next door because the roof and walls were gone. He then knew he needed to get out. He frantically tried to find decent clothing but quickly realized there was no finding anything. His nose would not stop bleeding and so he grabbed something near him ( possibly a shirt) and held it on his nose. He crawled out of the rubble that was once the bedroom he was sleeping so soundly in minutes earlier. He managed to walk to the road to try to get help. Once at the road he remembers a car pulling in and turning around he yelled for help but they turned around and left ( we now know that there were trees across the road and the person likely never saw him and was just turning around because the tree in the road.) Then a truck pulled in and was about to do the same when Dad began yelling to the driver and calling for help. The truck pulled back in and came to his rescue. All we know is the mans name is Jamey. He gave Dad clothes to put on and began trying to contact my mom. Anyone who has been to or near my parents know making a phone call is practically impossible due to no service and horrible reception when you do have service. He  finally got  ahold of my mom by text message. He meanwhile sent someone who was with him to check on my grandparents. They live the next driveway up. ( They were fine.)  Two ambulances came and I believe the rescue squad and my dad was transported to the hospital. I received a voicemail from my mom saying I need you to call me back as soon as you get this, AS SOON AS YOU GET THIS. I knew the moment I had missed a call from mom during our work hours that something was wrong before even listening to the voicemail. I called back and my mom said A tornado hit our house and your dad is in a ambulance on the way to the hospital. I immediately panicked and took off. I prayed the entire way through sobs and reminded myself that I needed to be careful because Connor needs a mama and I am no help to anyone If i wreck ( the roads were soaked and the rain was still coming,)  Ill skip alot of the rest but I will say the Doctors and nurses all say my dad is a miracle. No one can explain how he is alive little on with only scrapes and bruises. He should have been dead or at the very least broken to pieces.  My dad is whole. My dad is alive. However my dad is traumatized. Though not physically, he is indeed broken.

 My Dad was discharged from the hospital and we immediately went to see the house, The storms had cleared and we wanted to see with our own eyes and gather what could be salvaged.  When we pulled up to the house friends and family and friends of friends were there digging through to pull out what they could. Nothing could prepare my eyes for what I saw that day.

   The guys who helped were able to dig out alot of moms clothes and some photo albums, and  a few other little things but when you have nothing they are all big things!!! I could never ever thank them enough. We needed them so desperately when we drove up that driveway for the first time.  What meant the most is we had no clue they were coming and we didnt ask. They just stepped up and helped.

 Somewhere in this area is where dad was. 

Gods hand was definitely on him no other way to explain him being able to crawl out and find help. 

 Adrenaline was so high that day that I think we were all in shock and unbelief and didnt really grasp the magnitude of what had happened. However today (the day after)

as we have calmed down we have wept fiercely on and off all day. I cant sleep as my mind is constantly racing. I cannot even seem to form a solid thought.  However there is work to be done and we have to pull together and keep moving. 

I have been reminded of a sermon that was preached by Pastor Derek this past sunday titled "Never Give Up". How was I to know only two short days later I would cling to those words. While I was racing to my dads side while praying and sobbing I remember crying out to God " Have your glory!"  I know that He will. Sometimes we dont know why things happen, but we know God will bring beauty from these ashes.  I sobbed and  can remember saying "I know your still good" over and over.   I have never believed those words so much even in the mist of the darkest time in my life. I know that I havent lived in this house in 9 years but it was still my safe haven. We moved into this house when I was 4 years old and it is literally the only home I remember growing up, and within moments my safe haven was in pieces. I have no idea how to be strong, All I want to do is crumble like my hurting heart is, but I am clinging to those words I heard two days before the worst day of my life and I am promising im  Never giving up!!! My entire life my parents have been strong for me and its time that I was strong for them. 

From the bottom of our broken hearts we want to thank everyone for the calls, text, messages, helping hands, and most importantly prayers. The love and support were being shown is unexplainable!  I literally cannot even answer everyone back. My phone has not stopped ringing and I am so appreciative. So thank you to everyone for everything!!!