We knew bringing Kole home didn't mean he was out of the woods. We didn't know if he would EVER be out of the woods completely. After bringing Kole home we were set up with a whole team of doctors and therapists that were going to help our son be the best he could be. I couldn't have been more excited to get all of this worked out, or at least worked on, so I knew I gave Kole the best chance at life. I could have never imagined what the past five years brought us.
It started with a few appointments at Hershey Medical Center. A pulmonologist, neurologist, gastroenterologist, craniofacial surgeon, geneologist and a cardiologist. At first it seemed a bit overwhelming, but I figured we would get through them and move on. Boy was I wrong. Each appointment revealed a reason for a new appointment, with a new doctor, with a new treatment plan. At the geneologist they found that Kole had some kind of abnormality with his chromosomes, but they have never see anything like it before, so once again we didn't know what we were up against. This was emotional torture. It felt like instead of making progress we just kept adding to the list of problems. My heart broke every morning we had to get up and drive an hour to the next appointment. It actually became a chore. I can't tell you how many appointments I rescheduled, just to buy myself time untill the next heartache. Then I would feel the guilt of not taking my son to get the care he needed. It was a big, vicious cycle. Not to mention we had some kind of therapist in our home almost everday of the week, sometimes two therapies a day. Talk about feeling invaded. Our normal, everyday routine was out the window. This became our routine. I felt horrible. I felt like I was spending everday of my sons life trying to change him. It was as if I was saying the way he is, isn't good enough. It killed me. I wanted to enjoy my son. I wanted to make him laugh and make him feel loved. Instead I had to fight with him to make his legs stretch in a way they wouldn't on there own, or make him roll over, which was obviously uncomfortable. What do you do in this situation? I finally found a happy medium. I limited therapy hours and the time that I would work with him, so there was time left for me to just be his Mom.
As for all of the appointments, they started to slow down after a few of the major issues were resolved. Kole had a surgery to repair his submucous cleft palate and tubes placed in his ears. This was one of the hardest things I had to do. I am terrified of anesthesia. I couldn't imagine how scared he would be when he woke up, in a world of pain, without his Mommy. They had me hold him when they gave him anesthesia. This alone was a very scary thing. I watched his little tiny body go limp in my arms. After seeing that I hoped and prayed I would never have to witness anything like that again, it scared the crap out of me. He came out of surgery just fine, a little groggy and sore, but fine. Kole was three and started to walk the day we brought him home from surgery.I was so thankful that for once something went the way it was supposed to. His next surgery would come when he was four. He finally could eat without his feeding tube, so it was time for that to go. It was a little bittersweet for me, after all it has been a part of him since basically birth. But we were happy to let it go and start a new adventure. This surgery was quick and Kole wasn't in too much pain afterwards. He was sent home that same day. After this, we finally felt like we marked a few things off our list.
In between all of this Kole was hospitalized about 15 times for pneumonia. I couldn't stand to see my baby so sick. Poor kid would get fevers of up to 106 degrees and he would shiver uncontrollably. It was a horrid sight. Once Kole even had a seizure from how quickly his temperature went up. His father experienced this alone. It was on Valentines Day, I went to the pharmacy to get tylenol and motrin to control the fever, I stopped by the cards so I could pick one out for the love of my life and maybe brighten his day. It took me too long with the meds and when I got home, my roomate informed me that Kole had a seizure and Him and Aj were at the hospital. I couldn't even drive, I had to call my dad to take me. I couldn't help but think the worst on our way to the hospital! I also knew that Aj had to be a wreck, these types of things are not his strong point. Don't get me wrong he handles them well at the time but it takes a big toll on him afterwards. When I got to the hospital and seen that his seizure was over and his temp was under control, I took and minute to make sure Aj was holding up. He was so shaken up. To this day he says that was the scariest day of his life. After he was calmed down, I noticed Kole's belonging bag. I started to sort through it and found his little shirt and onesie had been cut off of him in the ambulance. This is what broke me. It was a representation of how serious the situaton was. They needed to be able to work on him RIGHT AWAY! Kole recovered just fine, as did we. The doctors informed us that it may happen again with the way his fevers are. Since getting older, Kole has a lot less hospital visits, but when he gets sick, he gets SICK!
We signed Kole up for pre-school when he was three. Before school started he had to be evaluated to determine his level of learning. Again I was so excited to get him into this special needs pre-school, who knows exactly what he needs. At the end of the evaluation, we were sat down in front of the teacher and psychologist who performed the evaluation. They were going over information, it kinda went in one ear and out the othe, afterall we would get a copy of what they were reading. But then she said it "Your son has been diagnosed mentally retarded" I smiled and nodded like I understood and could handle the news, when really on the inside my heart hurt. This means he would never have a "normal" life that most parents want for their kids. It killed me to think, he may never get married, he may never have a best friend, he may never go to prom or play sports. It was crushing. Slowly we began to look at things differently and focused on the things Kole could do. No matter how small it may be to some people, it felt like climbing to the top of a mountain for us! We noticed in his 2nd year of pre-school he wasn't socializing or talking, so we were interested in having him evaluated for autism. These results were not a surprise to me, I knew what was going on with Kole. I couldn't be more proud of my son, he may not speak, but when he uses his go-talk to communicate with us it's a indescribable feeling. For so long we were sure our son would never be able to let us know his needs or wants and now, in his own special way, he could. He actually loves to tell us what he wants. Most of the time it's cheese curls and spongebob :) But were are happy to give him whatever he wants ( to a point of course) since he has to go through all of the trouble of expressing what he wants.
We are now at a comfortable part of our lives. Kole is making small steps with the help of his pre-school. It's refreshing to see him progress, since we are so used to the opposite. I can't wait to see what all day kindergarten will do for him. I think a whole new world is going to open up for him and I can't wait. This is the begining of a beautiful part in life, where anything is possible and Kole will have the tools to do whatever he puts his mind to.
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