Sure Step

I waited 2 years for Mason to start walking...and you would THINK it would be the best thing. But like all things when it comes to Mason its NEVER easy. When Mason started standing his physical therapist noticed he would stand on the inside of his feet and curl his toes under. She said this was due to low muscle tone.  She informed me that in the future he could need some braces for his feet to help stabilize and give him the support he needs. However she wanted to give him time to grow and to have time to correct his feet on his own. If only, but after time the Physical therapist  noticed it was getting worst as he started to walk. He was constantly seeking for stability. When she said leg braces I automatically pictured Forest Gump! Ohhhh noooo! I think she could tell by the way I looked at her that she needed to show me pictures and explain better so she did. 

I made an appointment to see the orthopedic which was a new doctor and someone I knew NOTHING about.When we went into the doctor he did 9 different measurements on Masons feet The brace wasn't going to fit like a shoe more like a glove. I got to pick the design of the brace, and color of the straps. 

 After picking the design and getting the measurements I had to wait 2 weeks then go back and do the fitting part. When the doctor told me Mason could be in sure steps for 3-4 years  I felt exhausted. He told me I needed to come back every 3-4 months and do this ALL over again. So every time Masons feet grew It wasn't a shopping at a PayLess getting new shoes but more doctor appointments...like I said EXHAUSTING!

After getting the braces Masons therapists could tell a huge difference. It seemed like he went from a few steps to walking all over the place. Mason likes his braces, no complaints. 

DAMN SHOES! So the only complaint I have would have to be is the shoes! The braces are longer on the inside of the foot and shorter on the outside so regular shoes wouldn't work. When Mason first got the braces and shoes he wasn't ALWAYS walking. He would still crawl. The shoes the doctor gave us wasn't flexible and caused sores on mason that left a scar on one of his feet. The braces are plastic so when walking on the kitchen floor he would bite the dust! So now what? Since Mason wasn't walking fully I had to come up with something because he has to wear the braces from the time he wakes till bed. I couldn't have him wear something that was causing pain. So I came across the idea for socks with the grippers on the bottom. With the sure steps he wears socks, his brace, then a shoe but up until recently he wore gripper socks over his braces, which worked like a charm!

Say it again...

      My husband deployed and a few days later Mason had his cardiology appointment with Dr. Greensides. Not an ideal timing but his visits were every 6 months so I had no choice. Got Mason ready, whipped up a protein shake for breakfast and out the door we went. Like always nerves take over me. Let the tests begin.
      First Mason gets a ECHO (Echo cardiogram) done. When getting the ECHO done Mason doesn't want to lay there. Its like an ultrasound. The room is colorful, the TV with cartoons playing and the nurse is very friendly but he could careless he has gunk on him and a stranger is too close for comfort. Of course like all doctor appointments the parent has to be the "bad guy" I had to hold his arms down and keep him still. I mean, come on what one year old would like that? So he starts crying, I do what any parent would do, SING! Yup right there in the office and like a charm it works every time. So as the nurse is doing the ECHO mason and I are singing the itsy bitsy spider. It wasn't our first time there and wasn't the first time we had to break into song to calm Mason down.
      Next came the ECG (Electrocardiogram) This involves 13 small stickers on arms, legs, chest and requires alot of patience.  With a 30 minute drive, 20 minute wait in the waiting room and a ECHO done before hand that was asking alot. So we sing some more. Before we know it he was finished. He got his blood pressure checked and heart listened to by Dr.Greenside and the results were in!
     Dr. Greenside said "How would you feel if I said See you in 2 years?"  I looked at him trying to register what he said. He continued..." He looks great!!! Everything looks healthy!" Of course I had to push my luck and say "If everything is perfect why do you need to see him in 2 years?" He told me children with Down syndrome CAN develop CHD (Congenital heart disease). I suppose if that comes up we will get to it when we get to it but for now...WOOOHOOOOO every 2 years? SAY IT AGAIN!
      As if that wasn't music to my ears already he handed me the results, took a deep breath and said "I have to take a moment and just compliment you, Mason is progressing well and that is because of you! The nurses were talking about you singing to him and how he responds to you, I think its great! With down syndrome there is a large spectrum, and Mason is on the higher end." I felt so overwhelmed. I do what I do because Mason is my child and of course I want the best for him but when I take a moment to reflect and hear positive feedback it makes me feel good. The doctor wouldn't stop with the compliments and in my mind I was thinking..." SAY IT AGAIN DOCTOR!!!!"

AAI...WHAT?

      When becoming a parent, watching your child participate in sports, or activities is exciting! Watching them learn something new and being their biggest cheerleader or biggest fan to me theres nothing better! To me, this is what its about! Since my oldest son was 2 he has participated in Gymnastics, Soccer, Baseball, Dance, Track, sports camps and will soon be playing basketball and wrestling. Hes very active and has also learned to swim by the age of 4  both my husband and I have taken swim lessons and I competed in Swim team.
      When becoming pregnant with our second child we planned on him or her being involved in sports and activities as well. When Mason was born after knowing he was born with Downs I always said "He will do everything his brother does and we will push him like we do his brother unless the doctor tells me MEDICALLY that he cant."
      Mason turned 2! Lets get active! At the age of 2 there is a mommy and me Gymnastics class I couldn't sign him up fast enough. When I told Masons physical therapist he had been participating in Gymnastics she was worried. She asked me if I had his neck x-rays done. Neck x-rays? She started telling me that if Mason had AAI (Atlantoaxial Instability) I could expose him to a possible injury. First off, I wasn't aware of AAI or any x-rays that I needed to get done. So she told me that children with Downs should be screened by the age of 3. If they wish to participate in sports they should have a cervical spine x-ray done. His therapist also included that special Olympics restrict competition in some sports until an x-ray is provided.
      What? Now what? So theres a possibility my son couldn't participate in ANY sports if the x-rays showed he DID have AAI? I was CRUSHED with the thought of this. She made me promise I wouldn't let him do anymore somersaults (That he was obsessed with doing, after learning in Gymnastics) until I got his X-rays done. Well okay then. This wasn't something I was going to wait on so that following week I had Mason at the doctor to get these X-rays done.
      X-rays are never fun with little kids. Mason had to sit down while I wrapped my arms around him, holding his arms down and a nurse pulled his head up to stretch out his neck. He screamed. Now that the x-rays were done...we wait.
      I kept thinking to myself, what if he couldn't be in any activity or sports? I suppose it was something we would adapt to but It would take me a while to get used to the idea. A few days later the results were in. "Hi Mrs. Killion this is Dr. Marion, I just got the x-ray results and all x-rays came back fine. We didn't notice anything that will restrict him from any sport!" I cant even explain how exciting that phone call was to me. What a relief!
      When I was at the doctors office he pulled up on his computer that said  children with down syndrome shouldn't participate in sports until after the age of 5. But he couldn't give me a good enough reason as to why. So Mason is in gymnastics twice a week and that's where he will stay!

*****Approx 15% of people with Down syndrome will have a misalignment of the cervical vertebrae and in the neck this exposes them to the possibility of injury if they participate in activities that hyper extend or radically flex the neck or upper spine. If child Does have AAI there are restrictions that could posse as a risk for cervical spine injury in contact sports such as football, wrestling, rugby, boxing, recreational activities such as trampolining, gymnastics/tumbling and diving.*****

So far but so far to go

      Walking through a furniture store, Mason in a stroller and Dylan tagging along: a lady approached me. She was very excited to see me but the only problem was I have never seen her. She acted as if we were best friends in our past, I was confused, she was old enough to be my mother. I looked behind me and  thought  "Man this lady is excited to see someone in here." She began to walk towards me still excited, Waving, smiling great big and saying "HEEYYYY!!" I then realized she was in fact approaching me. She looked down at Mason and the first thing she said was "He has Downs..." I stared at her waiting to see where this conversation was going. There was a girl trailing behind her and when she got beside the lady, the lady said "This is my daughter."  I looked at her and very quickly learned her daughter was born with Down syndrome as well.
      The girl born with Down syndrome was 23 years old, not very tall, small, and very friendly. I've never had the chance to get to know someone who was born with Down syndrome so when I do see them I like to watch them. Cant help but be curious how Mason will be when hes older. Does she work? Does she live alone? I like to listen to how she talks. Does she sign? How does she walk? Has she had to see a specialist to help her walk? What medical attention has she needed? I'm aware every child with Down syndrome is different but in alot of ways they are similar. Her mother was very friendly and asking me questions about Mason. Obviously she has more knowledge on Down syndrome then I did as she has a 23 yr old. I tried my hardest not to over load her with questions but before we knew it an hour had gone by. She was impressed with my knowledge of Down syndrome and all that I do for Mason.
      In the middle of American Furniture I also learned there is so much I DIDN'T know. Although I have come a long way, I still have quite the road ahead of me.
After spending time talking to her and hearing her daughters journey through school, some troubles they encountered and realizing the stress with therapists, and doctors was going to multiply as he got older. Raising Mason was never going to be EASY. I felt a little discouraged after I left but yet hopeful.
      That SAME day (It was the first weekend alone since our soldier deployed so we wanted to stay busy.) We went to a place called Monkey buizness. Its a place for kids to play, climb, and run around. Mason was playing and this little boy Masons age started playing with him. His mom came and sat by me and asked If he was born with Down syndrome. I am asked that question alot and I always wonder what someone would do if I said "No!" ha ha. But my reply was yes and after hearing every negative thing and rude comments from people I get this "Don't waste my time, and ruin my day" kind of attitude. But that attitude quickly faded when she told me she was pregnant, due in a couple weeks and their entire pregnancy the question was "Does he or doesn't he have Down syndrome?"
       The question started after her initial blood work came back. As she was talking I could see her emotions taking over. I remember that feeling all too well. She told me she hasn't enjoyed her pregnancy BC its been a roller coaster ride.
Test after test, extra ultrasounds, an endless stream of unanswered questions. I wish there was a magic wand to take away all the worries, questions but theres not. I told her she can ask me anything bc I never had anyone I could pile questions on when I was pregnant.      
When your pregnant there are moms everywhere you can ask questions and get answers but not as many women with the experience of carrying a child who could have down syndrome.  I didn't even finish saying she could ask me questions before she started question after question. When did I find out? Did I do the new blood work test? Did I do an amniocentesis? What medical attention does Mason require? Was down syndrome hereditary for you? How do you cope?
      After answering questions I had to ask one of them myself. Did she do the amniocentesis? Her answer was yes. She had 2 different blood work done, 3 extra ultrasounds and the amniocentesis. She wanted to know. I can respect that bc I also wanted to prepare myself (more so bc we lived in Alaska with limited medical resources.)
     When she said 2 blood tests I was confused. Two? She told me they have this NEW test that can detect a DNA from Fatal Cells that have broken down. Some of this DNA crosses the placenta and gets into the mothers bloodstream and the test can look for an excess of material from the fetal chromosome 21. She told me the blood test eliminate the risk of a miscarriage and also have a lower error rate then conventional tests. This new test can be ran about 10 weeks into the pregnancy. While the Amniocentesis is performed between 15 and 20 weeks generally.
      Both the amniocentesis and the extra blood test came back negative at a high percentage. I thought "Why is she still worried?"  I remember after my 3D ultrasound for a short second I felt relieved bc they were SURE Mason wasn't going to be born with Down syndrome. But that feeling only lasted a short time. I couldn't stop thinking about down syndrome, researching Down syndrome and there was something in me that was saying Down syndrome wasn't going away. Maybe deep inside her even after these tests she felt the same way.
      As we were in a deep discussion Mason crawled to me. She stared at him and said  "He is SO cute!" I never met someone born with down syndrome, I shouldn't worry so much. She thanked me for taking the time to talk to her. She said she needed someone who has went through the same thing to spill her worries to someone who would understand.
      I know the lord works in mysterious ways sometimes but WOW I will never forget that day. Its like he showed me where I have been and where I was headed all in a few hours.
     

Coping takes time

      When looking at a positive pregnancy test and hearing the doctor say "Congratulations your pregnant!" Its almost instant the thoughts and dreams about all the things your child is going to do, experience, what your child is going to look like, the person he or she will become. The thoughts about the first football game, going on vacations, wedding and grand kids. One word can change those thoughts and dreams in an instant, Downsyndrome is the word, all those things you look forward to now become a question if those things are actually going to happen. Excitement quickly turns to worry and realization on how different your life is soon going to become.
      I find myself more often then not looking online, reading questions from expecting mothers who have the "scare" of downsyndrome through their pregnancy. One that stuck out to me and I think about often was a lady asking if she should do testings through her pregnancy to know for sure if her child will or will not have Downsyndrome. She carried on and said things like "I will keep the baby either way but I want to be able to cope with the result if the baby does have Downsyndrome before he or she is born."
      I remember the sleepless nights, endless research and constant worry through my pregnancy when I wasn't a 100% sure either way. I thought if I did do the test (amino) I could be a little more at ease if the results were negative. After knowing there was even a slight chance of a miscarriage through this test we chose to wait.
      The word that stuck out to me and continues to do so is COPE. She said "I want to be able to cope if the results are positive before he or she arrives" If only it was that quick and easy. I suppose once you found out your child was in fact going to be born with Downsyndrome you could better prepare yourself. Preparations as far as knowledge, the right doctors, therapist, and having the right support system around you. My son is almost two years old and I find myself still coping with the fact that my child doesn't do or like the same things as other kids his age, that my days home with him aren't about play dates coloring and parks but are more often about therapies and constant teaching.
      When my son is curled up in bed for nap or goes to sleep early because hes exhausted not from playing, or running around but because he cried extra hard from his RSV shots he gets once a month, or he had two therapies in a day, or he spent 2 hours at the cardiology appointment getting monitored and hooked up to machines. Those are the times I look back at the positive pregnancy test and visions I had in my head and realized that is not my reality, and that coping is not a day or two thing.