Holding Mason, talking to him he puts both hands on my cheeks, smiles and talks to me. So precious. Mike and I notice progress like smiling, rolling back to front, front to back, jabbering, and finally being able to hold his head up. Mason will be 8 months old in a couple of weeks which kids his age can talk,feed themselves, pull themselves up to walk and know what is going on around them. Last week at the doctors office we were given a check list of things kids his age should do and unfortunately we weren't able to mark off one thing.
I was unpacking boxes yesterday and In one box it had Dylan's keep sake box which was full of cards,things received at the hospital, stories of his first year and everything he accomplished, and so much written in his baby book that I wrote on the borders,and on the inside covers. Also in the box was Masons baby book, Calender, and keepsake box. Tears roll down my face as the only things in his box is book after book, paper after paper about Down Syndrome,also phone numbers of people to contact for Downs, his baby book empty because he hasn't started all of his firsts, and there are only a couple Congratulation cards. (we mostly got questions, and "I'm sorry"
Venting to my best friend, crying not because I am disappointed, or I don't love my child just simply because in some way I feel I failed my baby, I feel the joy of having Mason was taken away from me because of all the fear, negative feed back, and worries. I have recently become friends with ladies who have kids with Down syndrome and I feel selfish, unappreciative because they go through so much more. Mason stayed 2 weeks at the hospital while a friend of mines baby stayed 5 months. I know I will go through things that people never will and I wont go through things or can imagine going through certain things that my friends go through.
Mike and I have learned to be patient,not compare Mason to other kids his age, don't take things for granted, and most importantly let Mason be his sweet little self and let him guide us. Keep on Keeping on...and always seeing the ups of downs! Its a learning process but I am learning and staying positive that I can make the best out of every situation.
Tuesday, January 17, 2012
Compassionate Reasignment Approved!
Its the lastnight before the movers came, I stood at Mason's door peeking in on him while he was sound asleep. Reminding myself everything I do I do for my kids. I didnt want to leave Alaska things were great there but I wanted Mason to accomplish everything he could and have all the resources available which was not in Alaska. Looking around his room remembering when we first moved in the house how it was going to be an office not a babies room made me giggled. Remembering the excitement of preparing his room,remembering the fears of pregnancy,but also remembering the joy when I finally got to bring Mason home.
Colorado Springs was where we were headed they have a downsyndrome organization, support groups, physical therapy, speech therapy, occupational therapy, pediatric cardiologist, and our family was 12 hours from the springs. I was looking forward for Mason to be in the hands of people who work with kids like him.
Handing over my house keys Saying goodbye to all the people who stood behind me through my pregnancy,and looking down at Alaska as we flew off was emotional and very difficult, but kissing Mason as we flew off reminded me I was doing what I needed to do.
Colorado Springs was where we were headed they have a downsyndrome organization, support groups, physical therapy, speech therapy, occupational therapy, pediatric cardiologist, and our family was 12 hours from the springs. I was looking forward for Mason to be in the hands of people who work with kids like him.
Handing over my house keys Saying goodbye to all the people who stood behind me through my pregnancy,and looking down at Alaska as we flew off was emotional and very difficult, but kissing Mason as we flew off reminded me I was doing what I needed to do.
Doctor "Lets start with the face..."
Doctor appointment after Doctor appointment has began to take over my life. Walk in, Sign in,Wait...repeat. Doctor walks in, "How are you Mrs.Killion?" the small talk starts. She informed me that she was soon getting out of the military and she was no longer going to be able to take care of Mason. She asked if it was okay for the doctor who was going to take over her position to sit in on this appointment. Well of course its okay I said. She leaves the room, comes in with the soon replacement doctor. Again with the small talk. "How are you? Nice to meet you."
I lay Mason on the table, who is in his diaper only...and his normal doctor says " okay lets start with his face, what do you notice that is different?" The other doctor replies saying " his eyes are further apart, his nose is flat, he has a small round face..."
I looked at the two doctors in complete utter frustration. I'm thinking to myself "What the hell do they think they are doing?"
They continue on... "Do you see how he has a very thick neck, and his ears are lower? Now lets look at his hands" She pointed out the Palmer's crease (which he has on one hand) and also pointed out the chubbiness of his fingers. I couldn't even speak I was so frustrated and angry. One doctor picked him up, having him in standing position, laying over her arm and she says " Down syndrome babies have poor muscle tone and they "drape" like a wet towel." Just then Mason proved her wrong and shot straight up not "draping" I had to giggle. ha ha
"WET TOWEL???" My mind was racing at this point I could think of a thousand names to call her and it wasnt going to be a wet towel. The appointment seemed to take forever, they continued on talking about his shorter legs, his feet how there is a gap between his big toe and little toes, talked about how their mouths are small, tongues are big and so on... I asked his doctor what the point of pointing everything out was, and she told me the doctor who is replacing her hasn't worked with a baby with Down syndrome and she wanted to point some things out. I couldn't believe my ears. They couldn't do this in the office after the appointment? All they looked at was his looks.What does that have to do with his medical needs? I knew this was the first and last time this doctor was going to see my son. Where is the compassion?
Compassionate reassignment was brought up to me at the hospital months prior after finding out Mason did have Downs. I loved my friends, loved Alaska, and wasn't ready to move. The papers were in process of getting approved or denied at this point. After this appointment I realized it would be best to move, for Mason so he can have doctors who work with kids with Down syndrome and have all the medical needs in our area also. I went home had a talk with Mike about our appointment and how disgusted I was. He agreed Mason would not be going back to that doctor.
I lay Mason on the table, who is in his diaper only...and his normal doctor says " okay lets start with his face, what do you notice that is different?" The other doctor replies saying " his eyes are further apart, his nose is flat, he has a small round face..."
I looked at the two doctors in complete utter frustration. I'm thinking to myself "What the hell do they think they are doing?"
They continue on... "Do you see how he has a very thick neck, and his ears are lower? Now lets look at his hands" She pointed out the Palmer's crease (which he has on one hand) and also pointed out the chubbiness of his fingers. I couldn't even speak I was so frustrated and angry. One doctor picked him up, having him in standing position, laying over her arm and she says " Down syndrome babies have poor muscle tone and they "drape" like a wet towel." Just then Mason proved her wrong and shot straight up not "draping" I had to giggle. ha ha
"WET TOWEL???" My mind was racing at this point I could think of a thousand names to call her and it wasnt going to be a wet towel. The appointment seemed to take forever, they continued on talking about his shorter legs, his feet how there is a gap between his big toe and little toes, talked about how their mouths are small, tongues are big and so on... I asked his doctor what the point of pointing everything out was, and she told me the doctor who is replacing her hasn't worked with a baby with Down syndrome and she wanted to point some things out. I couldn't believe my ears. They couldn't do this in the office after the appointment? All they looked at was his looks.What does that have to do with his medical needs? I knew this was the first and last time this doctor was going to see my son. Where is the compassion?
Compassionate reassignment was brought up to me at the hospital months prior after finding out Mason did have Downs. I loved my friends, loved Alaska, and wasn't ready to move. The papers were in process of getting approved or denied at this point. After this appointment I realized it would be best to move, for Mason so he can have doctors who work with kids with Down syndrome and have all the medical needs in our area also. I went home had a talk with Mike about our appointment and how disgusted I was. He agreed Mason would not be going back to that doctor.
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