Christmas shopping for Mason!

Its that time of year! Christmas! When I used to shop for Dylan  when he was Masons age I would buy the things he loved like musical toys, balls, and Winnie the pooh. But for Mason I learned I was very particular what we bought him. I would read the back of the box and look for the following...

What does this teach him? What are the benefits? What age is this toy for? Typically Mason plays with toys that are the age of 6-12 months but I was looking for the perfect sensory toys, cause and effect toys basically things that he can benefit from.  I was talking to my mom because she wanted to buy him Christmas toys, I told her the things his therapist suggested, things I was looking to buy him and with one reply she said "Can I buy him anything fun or something he would like?" It was then I realized how obsessed I have began to get with Masons Christmas shopping. For the most part I bought him things he can use for therapy (stack able toys, cause and effect toys, and sensory toys) but I did throw in a few things he would like. :)  I think overall Mason liked all his new toys.

(my mom bought this...both fun and beneficial.) 

What no parent wants to hear...

(Dylan a couple days old)

When I was a girl playing with baby dolls and wearing dresses, spending hours in front of the mirror styling my hair different ways, I always dreamed of being a mom to a house full of girls. Things don't always go as planned I learned. A week after my 21st birthday I became a mom to a red hair, green eyed boy, Dylan Michael. I also planned to have 3 or 4 kids close in age but that also didn't go as planned. When Dylan was a couple years old I was ready to have another baby but we struggled to get pregnant. 2 Years later we found I was pregnant and miscarried. A year later when Dylan was 5 I found out I was pregnant with our sweet Mason. 

      The first thing I thought of was..."How is Dylan going to feel after being the only child for 5 years?" He was the center of Mikes and I world. Through out the pregnancy we always bragged Dylan up about how cool being a big brother was going to be and what a great big brother and example he was going to be.

After our first ultrasound my worries TRIPLED. Not only was Dylan not going to be the only child but he is going to be a big brother of a boy with special needs requiring alot of extra attention. Our efforts to make Dylan feel extra special and important was a priority. A week or so before I went into labor I bought some of  Dylan's favorite things to make a "big brother basket" had things like a T-shirt that said "I'm a big brother" a book explaining how important and special a big brother is and so on. 

After I gave birth to Mason, Mike brought Dylan in to the hospital room. Instead of bragging about Mason this...Mason that...We gave Dylan his big brother basket, congratulated Dylan on being a big brother and made the day more about Dylan then Mason. Dylan was very happy.

When we first moved from Alaska to Colorado my time was filled with Doctor appointments, therapies, and getting the hang of things. Unfortunately Dylan was dragged along to the doctor appointments, and was in our house when there was several therapist to work with Mason. Was safe to say Mason was the center of attention only because he HAD to be. It was hard to explain to a 6 year old why all these people were coming to our house just to see Mason. I expressed my concerns to Masons therapist on how Dylan may be feeling and they were very good at making him feel wanted. They would give Dylan hugs, ask Dylan how he was and take a few minutes just for Dylan. 

After we got adjusted and Dylan started Kindergarten I tried to squeeze in All Masons therapy's  and doctors appointments while Dylan was in school so when he came home it was about Dylan and not Mason. Unfortunately it was difficult because Dylan was only in school for 3 hours. 

Mike and I take extra time to do one on one time with Dylan, special fun things that ONLY Dylan can do because Mason is to young. When Mason would learn to do something for example...crawl, we would be happy for Mason but take time to tell Dylan when he first started crawling 

"Dylan we just moved from an apartment to a house and there were cords all over the living room, next thing we know there you were crawling towards those cords for the first time. naughty naughty" Dylan loves to hear stories about himself and would giggle. 

Despite all our efforts it didn't help. A few days ago on my birthday Mike says "Do you know what Dylan told my mom? He told her that we don't love him like we love Mason, we love Mason more." I instantly wanted to talk to Dylan. He can feel the way he feels but I wanted to hear him say it and what made him say it. I thought it would make me feel better if I could talk to him about it. I asked him if he told his grandma that and he replied "yes, bc you do love Mason more then me bc you and dad play with Mason all the time." I could tell he wasn't saying it to be hateful because he told his grandma in private not in anger. I was crushed. I grabbed Dylan told him he was our first love, and we still love him more then ever.

Mike and I went out for my birthday, the minute I got in the car I cried. I never wanted Dylan to feel that way. I felt I tried to do everything I could to make Dylan feel special. I even did things that people thought I was crazy for like having story time with JUST Dylan then reading to Mason in his own room, not having story and prayer time together. 

Talking to Mike he said "I didn't know if I should tell you he said that because that has always been a fear of yours." 

We continued to talk about what it must look like for Dylan. Mason is now doing things at 19 months that Dylan was doing at 6 months, so to Dylan it might look like 19 months of constant bragging and "playtime" (which is more likely therapy time) Other children at 19 months play on their own, walk, talk while Mason still needs constant attention and help. 

We arent sure how to explain to Dylan why Mason needs more attention, goes to the doctor more and has home nurses and therapist constantly at our home. Since my husband told me Dylan felt this way it has been weighing on my heart I have been doing my research and looking for children books that could help Dylan understand better. But for now extra loves and extra prayer.

Step by step

     Everything Mason knows he has been taught. Not just the big things, to say words, or to crawl but the little things how to hold things, how to go from sitting position to his stomach, how to go from standing to sitting. For Dylan he caught on without me showing him as most kids do just needing some encouragement. For Mason I have to show him how to do things from moving his arms, legs repeatedly for him to learn something as simple as getting from the sitting position to getting on his stomach.
      Mason first learned how to get around by doing what we call the "worm." He didn't have the arm strength to hold himself up. After he learned that we were wanting to work on him sitting but he had no interest in it because he learned he couldn't go anywhere from the sitting position. His therapist told me we need to teach him how to go from sitting to laying on his stomach. As he would sit she would put both his hands in front of him and to the side of his body then pulling his legs out from under him. It didn't even take him a week to learn that he could sit AND be mobile it wasn't one way or the other. He would go from sitting to his stomach just the way he was taught his hands would go flat on the floor and to the right on his body everytime. His therapist said to me "Hes like a poster child for a step by step, he does everything in perfect order."
      The next step was to build his muscles to have more control of his body. His therapist said its time to introduce Mason to the stairs. Any parent knows the stairs are a pain because typically kids fall down them. For Mason it was going to be helpful. She started by sitting Mason on the steps to get balance, then put a toy table in front of him teaching him to pull himself up to it by holding his feet flat on the floor and I would hold his hips to help stabilize him. The table played music and was a great encourage.  He caught on quickly. Therapy was over and she told me to continue to work with him on pulling himself up and balance.She said in a few weeks he will have the strength and be ready to climb the stairs.

       His therapist came the following week and asked me how the stairs was going, with a smile I said I have to show you something. I took Mason to the stairs not only did he learn to sit on the step, or pull himself up, I taught him how to CLIMB the steps. I would take his hands, placing them on the step in front of him, then pull one knee up on the step, then the following knee. To encourage Mason I used one of his favorite balls, placing it on next step and when he would get to that step I would throw it on the next step. When Mason showed his therapist he could climb the stairs HE would put the ball on the next step, get to that step then throw the ball on the next step, just as I used to teach him. His therapist is always amazed at how quickly Mason catches on, how hard I push him and his determination. She particularly thought it was cute how he used the ball just as I used the ball to encourage him. She never saw a child do that.
       That day she wanted to work more on Mason pulling himself up to the coffee table, and couch. She taught him by putting his hands on the coffee table then starting with the right foot she put it flat underneath him then grabbed the other foot putting it flat under him and he would pull himself up. Within the next week he would pop up to the couch and coffee table.

       She always compliments me and says "Its you, you work so hard with him and every week he is showing new signs of development and learning so quickly." I always turn the credit around BC I don't know what the next "step" is or the little tricks on how to get him to do the next step. She teaches me everything I know. She teaches me something, I work with him through the week and we are ready for the next step. We make a great team!
      Therapy has been something I don't LOVE but I'm always up for the challenge and of course want and love to see Mason succeed. I tell his therapist I enjoy showing her everything Mason learns in a week time and she says "not as much as I enjoy seeing it."

Pregnancy and Infant Loss Remembrance..our story

    I wanted to share this story because I have learned I'm not alone and have shared this story to many people who have went through this experience.

Our story...

Getting ready in the morning I was nervous, scared and not excited one bit which was odd because I was 14 weeks pregnant and getting ready for a doctor appointment. A close friend and I decided to make a day of it to go shopping, out for lunch just the two of us. When I kissed my husband before we left I said "something is off." He told me everything will be fine, I love you, have a good time he said. My doctor appointment was 45 minutes from where we lived and on the way there I had butterflies, and felt sick. I kept telling me friend "ahhh I'm so nervous" I wasn't sure why I was having these feelings this wasn't my first pregnancy. The closer we got to the clinic the more I felt sick.

      Sitting in the lobby taking deep breaths I heard "Stacy Killion?" well that's my name...here we go I thought.  The nurse wanted to get my height, weight, and vitals. I informed her I was VERY nervous. She checked my temperature and I had a fever she could tell I was worked up. She gave me a glass of water and had me sit for a few minutes to calm down. I had NO idea what was going on with my body.Later the doctor came in and said "how are you feeling?" I told her I was a wreck! She laid me back and wanted to hear the baby's heart beat. She moved the Doppler around and we weren't getting a heart beat, she pushed harder and harder on my stomach saying "sometimes it takes a minute"  A tear rolled down my face, and I looked at my friend. I knew something wasn't right. She continued to push (which was sore), I laid my head back, closed my eyes and imagined the baby's heartbeat saying softly "come on, come on" but still no heartbeat. I had to do a vaginal ultrasound. Waiting for a ultrasound tech to call my name the doctor sat by me and was trying to keep my spirits up. Trying to stay positive.

        "Stacy Killion?" well there's my name again...here we go. I walked into a room, slipped on a gown and laid down. I looked up at a flat screen tv that had my ultrasound on it and saw this little baby, a little body just laying there. I quickly noticed the baby wasn't moving and there was no heart beat. I said "How come there's no heart beat?" hoping the machine was broken. The tech said "because there isn't one. I'm sorry I will get your doctor to confirm your loss." 

       My friend came over to me not saying a word and wrapped her arms around me. I sobbed. In my mind I was instantly thinking "what did I do wrong?" "How does this happen?" "How am I going to tell my husband I lost our baby?"

       The doctor came in and confirmed I miscarried  Hearing those words were gut wrenching. I couldn't pull myself together. I eventually got myself up and was ready to talk to the doctor. She hugged me and said "I am so sorry" We sat down and she handed me a folder full of information about miscarriages, how to cope, and support groups. I couldn't believe what I was reading, an hour ago I thought I was having a baby and here I was talking about how to remove my baby that I lost. As she was talking I was thinking about the moment my test results came back positive and how excited I was to have another baby. In a blink of an eye that excitement was over and I was deciding if I wanted to have my baby naturally in my own home or have a DNC (surgery) 

      The doctor told me most woman who miscarry choose to have their baby on their own time and let their bodies do what they were made to do. I COULDN'T even wrap my head around how I would cope with that. Surgery was the only way for me. We scheduled the surgery first thing in the morning because I didn't want to risk having the baby naturally.

      After long talks, and many tears my friend and I left the hospital. I was given doctors orders not to drive because I was still an emotional wreck. I texted my husband and said " I lost our baby...miscarried :("  If I would of called him he wouldn't of understood me, I don't even think I could of gotten my mouth to say the words. On our way home I looked down at my stomach which appeared to look pregnant but knew I wasn't.

      When I got home to my husband there were no words, he held me tight. I don't think he knew what to say. To make me feel better he said "We can try again." I knew he was trying to butter me up but I had already made up my mind there will be no more babies, I was never going to get pregnant again. 

      After a sleepless night we drove to the hospital. I put a gown on, the nurse gave me an IV, and took some blood. As we were talking I found out my nurse used to go to my church she wanted to share a story with me about a woman who had lost her son who was a few years old to a horse accident. Every year they do something in his memory to celebrate his life. She had a miscarriage and it was harder for her to cope with then losing her son she had known and raised. She felt alone and when she lost her son she wasn't alone she had a lot of family and friends by her side. The nurse told me that was an eye opener for her because there was a baby she never met and a son she had raised and the baby was harder to cope with losing. 

      We had the Chaplin come in and say a prayer before my surgery.  As I was being rolled down the hall in the bed I cried knowing that when I woke up there would be no baby.I was knocked out less then ten minutes later. Woke up with my husband next to me holding my hand. I thought after the baby was removed I could move on and it would be easier but the pain didn't go away. We had to stay in the hospital an hour after surgery then I was free to leave. As we were leaving the nurse gave me this little circle (looked like a ring) that was on a poem that said this...

You were my little bean, 
that was created in my womb.
I laid in bed at night excited, 
and now I'm full of gloom.
I never understood how much 
you could miss someone you never met.
And now my heart aches so bad, 
that it fills me with regret.
Was there something I did wrong? 
How could this come to be?
Your little face, your hands, your feet, 
is something I'll never see.
I loved you oh so much, 
its something that cannot be explained. 
Now these feelings of anger and jealousy, 
make me feel ashamed.
You are my angel baby, 
and that I know is true.
God is holding you now, 
and listening to you cue.
You are in Heaven looking down,
watching mommy cry.
I wish you were here, 
but then I know that this is not goodbye.

     On the way home Mike stopped at Walmart  said " I will be right back" When he got back in the car he pulled out a necklace chain, he took off this little ring the nurse gave me and put it on the chain. He put the chain around my neck and said "This will be in memory of our baby." 3 years later I still wear that necklace and think of our sweet little angel. 

SMILE

Its safe to say I take a MILLION pictures of my children. One day Mason was playing and of course I had to take some pictures. To my surprise Mason saw the flash turned around and did the cutest, silly smile. I WAS HOOKED! I said "Smiiiiile" and he did it AGAIN! I have a MILLION pictures on my camera of this smile. Every week his therapist asks me what his progress is for the week, if there was anything new he was doing I wanted to show her his cuteness. I got my phone out and said "I have to share this with you." Mason was playing, I said "SMIIIILE" he turned towards the camera and did this paticular smile he only does when he sees a flash. She was hooked. She wanted me to do take more pictures, and of course he kept us entertained and continued with this gorgeous smile.

     

A Blankey is a babies Best Friend

When Dylan was born Mike wanted to buy a security blanket. For me I never had one so it didn't seem like a MUST but to Mike it was important. So we went to WalMart looked at all the blankets. Soft ones, bright ones, plain ones, big ones, little ones. We decided on a blue one with balls on it (basketball,baseball,soccer) It didn't take long for Dylan to LOVE the blanket and need it EVERY night! I thought Dylan's love for his blanket was cute and it calmed him down for bed however If we would travel, or see grandparents we would have to make sure we had it with us and most importantly didn't forget it. I don't allow blankeys to go to the grocery store, or in the car (unless traveling) which made him love and want his blankey more. 

After Mason was born I knew it was a Must have for him to have a blankey. 

We bought a few, and several were given to us. We continued to give him a few at different times so he could decide which blankey he wanted. That he did. The small,soft blue blankey he chose was given to Dylan from my mom. But Dylan already had his ball blankey he loved. But I held on to it. Mason decided that was going to be his blankey. 

 Mason never got attached to a binky but when giving him his blankey he sucks on his finger on his right hand while having his blankey in his left hand. Its a given that when he gets his blankey his finger goes in his mouth. Only when he has his blankey he sucks on his finger. Mason cant sleep without his blankey, and it soothes him the minute he lays down or if he isn't feeling good. So now I see the importance of a blankey. Dylan STILL has his blankey (only when he sleeps) and he will be 7.

Music Therapy

When music therapy was first brought up as a source available for Mason I didn't hesitate. Music therapy has so many benefits It helps children improve their gross and fine motor skills, aids in academic achievement, improves social interaction skills and helps with communication. Mason reacts to music in a positive way. Mason can be really upset I can turn on music or sing to him and he smiles instantly. It ALWAYS works. I was sure Music therapy would be positive for him. I was right! Music therapy he learned to hit drums, shake maracas and play with chimes. Which was HUGE for him because he was sensitive to touch he doesn't like to hold, or grab things, but for something to make a pretty sound or a loud noise he loved it. Since music therapy he has his own set of musical instruments and is his favorite thing to play with.

Masons music therapist is so sweet, gentle to Mason he loved her instantly. She sings, signs, and plays music, interacts with him and also taught him to strum on a chordaharp. She has a small pick for her and a large blue one for him. (the bottom pic you can see the large blue pick) she plays and sings while allowing mason to explore and strum. He would sit there for most of the therapy time wanting to play. She was impressed by how much he loved music and how he responds to it.

Something as simple as a keyboard can help Mason move from one end of the coffee table to the other, also helping with strength as he stands there banging on the keyboard making music he is also building muscle.

Low muscle tone

      Kids with Down syndrome have a large tongue, small mouth, and low muscle tone which results in the child leaving his or her mouth open. For Mason we were told from his Ear, Nose, and Throat doctor he does not have a large tongue however he does have low muscle tone which we see more often now that he is getting older. He doesn't stick his tongue out ever but we have noticed him leaving his mouth open more often. Low muscle tone results in delay of speech, difficult for him to drink from a sippy (he wears more then he drinks), and also leaving his mouth open.
      In therapy we have been introduced to different techniques and ideas to help Mason strengthen his mouth

TWIZZLERS TWIZZLERS TWIZZLERS one of the tools we use is Twizzlers, they require alot of chewing and taste delicious!
Other things we are using right now is carrot sticks, beef jerky, celery sticks, different length and size straws, frozen fruit in his mesh bag. Anything he has to really bite down on and chew. We are constantly giving him something to chew on. Right now he loves his twizzlers and so does his daddy. ha ha.
       A result in low muscle tone is also sensory issues. Mason is constantly searching for ways to get sensory input, one of the ways is he can hit his face on something or hit his head and purposely do it again because he likes the feeling of it. So of course we don't want him to do that so some things we are trying is more facial massages, over using his teether (that vibrates), also giving him sour, or spicy foods to "waken" his mouth. Seems to be doing the trick. We have seen a huge improvement since we started these techniques and since then he has learned to say "bu bye!" This will be something we will constantly have to work at but we accept that challenge! :)

"If you judge people, you have no time to love them.”

      When Mason was just a few weeks old a lady asked me alot of questions about my feelings about having a child with Down syndrome. Although I was still coping with the news myself I answered her questions. She informed me she loved to talk to me. Thought I was Masons guardian angel and also added she thought it was odd that some parents choose NOT to talk about their child with Down syndrome. At the time I felt if I didn't talk about and acknowledge Mason having Downs I was ashamed in some way.
      Mason is now 15 months old. Although people see a special needs baby I see this little guy who loves and hates the same things as any other baby. A typical run to the store has become something I dread. Not because I'm  embarrassed of having Mason because I'm not sure how to shrug off people with their comments and stares.

     An older lady approached me with not even so much as a "hi how are ya?" the first thing she said was "Have you hooked up with the Down syndrome association in the Springs?" She said it in this "know it all tone" she continued with "I have a friend her son has downs and he was issued an iPad for free" She carried on talking about this little boy saying things like "He is happy all the time, so sweet. My friend was young just like you she was 19 when she had her baby with downs" I couldn't be more annoyed. When I was approached this way I felt like I was being belittled, like I didn't know anything. Her tone and the way she was going about the conversation made ME feel uncomfortable. No compassion, No privacy, she just kept pushing and pushing. I left her in the middle of her rambling on. I couldn't take it anymore. After putting Mason in his car seat I sat in my car with my head on the stirring wheel crying. It was that very day I learned why some parents choose not to talk about their child with Down syndrome. Not because their embarrassed, or ashamed but because people have a way of making them feel like their doing something wrong, or they dont love their child enough just like this one lady made me feel.
      She was over weight and I wasn't approaching her with "Do you know about the plus size clothing store in the Springs??" Nobody is perfect! I couldn't understand why she saw his disability and kept going on it with no point really. Am I going to learn to deal with people like this? Is it ever going to end?
      Later on that day Mason had therapy. His therapist has been with us for a year now and could tell something was bothering me. I told her about this lady, how she made me feel. She said "There was this  mom with a special needs child, when she was approached she would fire back with I will forgive you for asking if you forgive me for ignoring you." She suggested I use that. We talked for a long time, She made me feel like I wasn't over reacting and basically the lady should mind her own business.
      This is a coping process I am trying to deal with because it probably wont change. The older Mason gets the more noticeable his disability is. I couldn't love my little boy more, I'm absolutely proud of his progress, YES I know he is a gift from God (just like all babies) but I also feel I don't need to explain my love for my child at a check out line.

Life after oxygen

      All the oxygen was picked up the other day. When the guy was loading his van up with all the oxygen tanks, and Masons concentrator he had NO idea he was unloading a million pounds off my shoulders. Standing at the door watching him roll the concentrator to his van he looked back and said "Have a good day Mrs. Killion. "HA! A good day? He had NO idea he just made my LIFE!"
      When Dylan was a baby he would cry because he didn't want to be put in his crib but Mason would cry every night for a different reason. As gentle as we would try to be while putting the oxygen tubes up his nose it didn't matter it was irritating, and hurt. He started getting sores in his nose but we had no choice to put medicine on his sores and continue with the oxygen. If the oxygen tube would come out of his nose in the middle of the night I would try my to put it back on and not wake him but that was nearly impossible. Which would lead to more tears.
      Looking into his room when he is sound asleep I cant help but smile, knowing he is sleeping AND breathing. Also I have found myself getting more sleep! When I told a friend Mason needed oxygen he said "I don't think its a bad thing if it helps him" No I wouldn't say a BAD thing it was the solution to a problem. However knowing your child is reliant on oxygen is scary.
      Constant thoughts weren't "Did I pack enough formula?" no no it was more like "I need to call Lincare and get more oxygen tanks delivered" and before going somewhere I would think "I better double check and make sure I don't need to grab another oxygen tank." As a habit I still think of these things but smile when I realize he don't need oxygen! It is still really weird seeing him without oxygen but I LOVE IT!!

Q and A

Are your friends and family supportive?
My family has been supportive since day one of finding out Mason does have Down syndrome. As far as my friends its kind of been come and go with support. I feel maybe my friends don't know what to say, or how to act around Mason because they don't want to be offensive by questions they may have.


What was the reaction from friends and family after finding out your child had Downs?
After my first ultrasound I had several friends say "Don't worry the doctors thought my child had downs too, I was devastated but then the results came back negative." "The doctors don't know what they are talking about" and after I had a 4D ultrasound and the Doctor told me my child didn't have downs, I got a lot of " I told you so" and one person said "You over reacted when you had nothing to worry about."  I had a few friends that were very supportive, one calling me when I was in the hospital with Mason in tears wishing she could be there. Another telling me about her special needs sister. Which always shed positive light to hear stories and know what I was going through.
My family was very supportive I got texts sent to me daily to keep updated, to check on me, and after Mason was born my number was on speed dial.


What did my family think meeting Mason for the first time?
Hes a baby, gorgeous and it was love at first sight! When we went out to eat or saw someone my family knew they would brag Mason up. My Grandpa would say "This is my great grandson, he was named after...ME, he was born in Alaska." My aunt and grandma would show pictures to friends of theirs. Never once did I hear them talk about his disability. Always very positive.

Who do you vent to or go to when feeling down?
I would have to say my family and of course the one that rides this journey with me...my husband.

Would you be willing to talk to other parents who experience a journey like yours?
To be honest I have had LOTS of people come to me, ask my opinion on abortion, or an amino or directed to read my blogs and to be there for them understanding the thoughts, and feelings they are going through...been there done that.

 

Kickin it up a knotch

      Mason started drinking out of a straw about 4 months and he wasn't sloppy with it. Lately I swear he wears more then he drinks.Which made me rethink if he was ready to give up the bottle. After long talks with his therapist we talked about him not talking except for ma and dada, we talked about certain foods he wont take (like cereal WITH milk, anything he cant get a chunk of like a sucker, carrot...ect) and recently we noticed he leaves his mouth open far more then he ever did. The therapist told me its his low muscle tone and we need to strengthen his mouth.

      So we discussed a plan. She suggested I give him anything and everything to chew on. (his therapy spoons, large carrots, celery sticks, beef jerky) basically anything he has to really chew but cant get a hunk and choke. Also said to force cereal with milk. right now he is frustrated because he isn't sure what to do with the milk AND the solid in his mouth so he only wants one or the other.
       I refuse to go back to a bottle because I know he is capable of drinking from a sippy, or a straw so she wants me to thicken his drinks if it is applesauce with apple juice or a shake. Something he has to REALLY work at to get. I know he wont like ANY of these suggestions but we will give it a try, cuz in the end it will pay off.
       His therapist said if we can strengthen his mouth he would talk more. Also he is becoming a picky eater because he prefers food that is easy to eat and he doesn't have to work at. What he doesn't know is momma is going to push him and strengthen that mouth! Ready Set GO!
   

6 months, One phone call, alot of tears

      My phone rang today it was Masons doctor "I got the results back from the sleep test done here in Colorado last week." I closed my eyes and crossed my fingers and she said " THE RESULTS WERE EXCELLENT! His oxygen level was more then 90%  One hundred percent of the time!" I couldn't believe my ears! I sobbed, then apologized to the doctor for sobbing in her ear then sobbed some more. She wasn't bothered. She told me that she put in the order to Lincare to pick up all supplies Mason will no longer need it. Of course the more she talked about this the more I literally sobbed! I picked Mason up and starting kissing him while still sobbing! FINALLY!
      At that moment I felt a million pounds lifted off my chest!Looking back I remembered the sleepless nights, all the tears from Mason, and the hassle the oxygen was to get from the oxygen company, all the sleep tests, and doctor appointments.

      Our journey to see if we could get rid of the oxygen went like this: We saw a ear, nose and throat doctor but he didn't see a reason to remove his tonsils and adenoids  because the sleep study showed more central apnea then obstructive also looking at his tongue (not an enlarged tongue) and the tonsils and adnoids (not concerning) he said it wouldnt make a difference. Then we talked to Masons doctor and he was convinced it was the high altitude and he suggested we moved. We just moved here less then a year ago and that wasn't something we WANTED to do however we would do if need be. So we pulled some strings with Masons doctor to allow us to do a pulse ox test in Iowa (lower altitude) and where our family is. It was approved! We did a pulse ox after a week of being in Iowa so Mason could adjust and we could see if the altitude was the problem.

      I talked to Masons doctor about the Iowa results and he was 90% 94% of the time which was a HUGE improvement. This doctor also agreed that a move would be necesary. I asked her if there was anyway that maybe Mason grew out of sleep apnea (I have researched and they say about a year they grow out of it) She told me that would be a possibility. I then was the annoying mother and requested ANOTHER sleep test using the pulse ox. Which was the results I got today! The results we got today was actually BETTER then the Iowa results (done about a month ago)
      Getting Mason ready for bed would require putting the oxygen tube through his pjs, fighting with him to get the nasal piece on, lots of tears, calming him down, him falling asleep, me checking on him, me putting the oxygen BACK on, him crying, me calming him down...repeat. Tonight I kissed him, laid him in his bed and he is peacefully, SAFELY sleeping! I still have this urge to go check on him as it was the last 6 months routine EVERY NIGHT. I will have to get passed that and try to sleep!
      Looking back it has been a pain to try to find the resolution but right now Im happy for Mason and relieved! : )   Thanks everyone for the on going prayers! XOXO

"Is he Downs?"

      So it begins...just an ordinary day Mason and I running errands, we were at Walmart and this older lady comes up to Mason. Started off by asking "Are you in a hurry I would love to talk with your little guy." of course I told her she could. Mason was in a silly, happy mood playing with his monkey I attached to the cart. She asked me what his name was, how old he was, then paused a second. She then looked at me and said "Is he Downs?" She said it so unassumingly. I could tell she new the answer before she asked.
      Like always after my answer is "Yes!" I get the lines that go something like this...
Ohhhh he is perfect, just precious, No matter what anyone says he is perfect the way he is, He will be fine, He looks healthy. My face looks a little something like "Okay? Did I say he wasn't perfect? Or he wasn't going to be fine? I'm just here shopping for a few things.
      I don't want to be hasty or rude but I hear these lines WAY more then I would like. Me accepting Mason was NEVER an issue, my concerns for his health, well being, and If we could give him everything he deserves was always on our worry chart but when my husband and I decided no amino during pregnancy that was because either way with or without downs he was going to be loved and accepted in our family.
     I understand there is a fascination but if a person has other disabilities like being blind, or deaf, or missing a limb of some kind, do people approach them? I'm torn with my feelings on being approached, partially because I'm not sure what these complete strangers are going to say and how I am going to react. Or maybe I feel its odd because I wouldn't dare walk up to someone and have the conversation like this lady and I did today. 

      The other day at the pool there were these ladies who walked up to Mason and was in complete awe over him.They took pictures of him, wanted to hold him, and couldn't stop talking about how cute he was.  I said to my friend "I'm always uncomfortable because I don't know if they are feeling sorry for him because they see his disability or if they see this adorable cute face." She assured me Mason is a cute boy so that was probably the case."
      I understand people are going to notice his disability now that he is getting older it is far more noticeable but I'm not sure I could ever get used to it.

Passed with flying colors

      6 months ago Mason had an evaluation. The therapists, and care taker came to my house, asked me questions and ran tests on Mason to determine where he was and what he needed to work on. We set goals and were going to re-evaluate in 6 months. Well 6 months is here! I was beyond ready for the evaluation because Mason excelled past our expectations.
       Looking back 6 months ago I was concerned and needed help to get Mason eating baby food, holding his head, and was still learning about what to expect and so on. Mason wouldn't be where he is today if it wasn't for his therapist. The care taker asked me what I wanted to see more from their program and I told her if it wasn't for Miss Mary I don't know where we would be today. She comes in gives us new ideas to get to the next step and helps me know what to work on with Mason and usually he can do what she has given him to work on by the next time she visits. She is so kind, loves Mason and you can tell she enjoys her job truly.
      I work with Mason every day with the tasks his therapist has given me but if it wasn't for her I wouldn't know where to begin. Little things she taught me was like putting a toy (a little piano) in front of him, putting his back against the couch to help him sit. For a while he didn't want to sit because he learned how to get around and when he was sitting he couldn't crawl. So his therapist showed me to put him in sitting position, put his hands to the side of his body and help him to his stomach. It wasn't long he would be sitting then get right to his stomach just because of that technique she showed me. It seems like something small but for any other baby they learn to do those things on their own, Mason needed a little direction. Last week she sat Mason on the bottom step putting one of his stand up toys in front of him, she helped him to get to a standing position (this was to help him get strong and teach him to pull up to things) After she left I continued to work with him. Sitting, then standing...2 days later I went in his room and he was standing in his crib!!!!!

      After the evaluation we came to the conclusion his gross motor skills are great and so is his small motor skills. He does say momma and Dada but that is where they wanted to see more of by next evaluation. They also want him walking around holding onto things. I'm going to up them one and say I want him WALKING!! Last 6 month goal they wanted him to sit on his own and get to crawling position but I up them one and said I wanted him crawling and WOLA! DONE! This boy is determined and ready!
      Mason isn't the most sociable person in the world and still has anxiety and scared of strangers that head start program was brought up again. At the last evaluation it was mentioned but I shrugged it off, I thought it was crazy he wasn't even one yet and I was going to leave him in a head start program? no no. But now that he is older and it is a concern of mine I went ahead and registered him in the program. I want him to learn to be away from mommy and cope with other people and children. Wont be long he will be in preschool!

Courage is fire, and bullying is smoke.

     

       Bullying is typical. Some people don't have filters or they bully to get extra attention. I figure when Mason is older this is something I will have to deal with. I had a friend tell me her child was being bullied at school and she asked me what I would do. I told her I would do everything in my power to make it stop. I would go to the teacher, the principal, the parents and let them be aware of what is being said. This is something you would see from younger kids but that's not always the case.
      Mike and I had friends who we spent lots of time with, they played with our kids, held Mason several times, we welcomed them in our home also. I had a fall out with another friend and this couple decided to get involved. (I won't mention names bc I'm not blogging to throw them under the bus just to share my experience.) One night there was pounding on my door, Mike was sound asleep on the couch so I answered. There was our neighbor/old friend standing there. The second I opened my door he got in my face and started cussing me out. I wasn't fazed by his screaming I gave him a look like "dude your crazy" as he continued to yell not getting much of a reaction from me he said "Are you retarded?" I was still looking at him like he was wasting his time. Then he said " Are you retarded like your son Mason?"  My heart started pounding, I started shaking. Next thing I know I had a huge traffic light toy of Dylan's in my hand and I was seconds from swinging. My brain turned off and I wasn't thinking about the consequences of my actions I jumped into mother bear mode. He backed down off my porch quickly. I went from not caring to screaming at the top of my lungs. A neighbor came out and said she was going to call the cops if we didn't quiet down and I said "Go ahead and call the cops, save this guys life!"
      Mike heard all the screaming and woke up running outside. When the neighbor saw Mike coming up to us he back up into his yard. Mike grabbed my hand, didn't say anything because he had NO idea what was going on. At this point the neighbor wasn't saying anything I had plenty I wanted to get off my mind since that was said. He then apologized and said "I love your kids, I had fun playing with Mason." I said "You can forget that, you will never see him and I will NEVER forgive you!" I told him I was calling the police and I went in the house.
      I was so worked up I couldn't stop crying, I called my family to calm down. They were very upset and angry as well. They encouraged me calling the police. I was hesitant bc of course I picked up something with intentions of hitting him and he never threatened me with his words, just his actions. I let time go by but I couldn't let this slide. I called the police, they came to my house got the information they needed then went to our neighbors house. The police came back in and said "Do you remember what you grabbed and what you said when you grabbed this particular thing?" I said "If you are asking me if I threatened him hell yeah! After he said that about a defense less baby I couldn't control myself." The cop smirked. I said "You do what you gotta do but the thing he said about a special needs baby is NOT Acceptable!"
      There were no charges pressed just a warning to my neighbor and if they were to talk to me or come on my property he was going to be arrested for harassment. I don't have any jail time and I don't usually want to beat the crap out of a soldier who is trained to kill with his bare hands but I lost ALL control when he said that about my baby. I don't usually call the cops either but I wanted to make a point that this certain thing was unacceptable and I WILL not let it slide, even if I had to do jail time.
      When I was on the phone with my family, after I told Mike the whole story Mike went back outside to talk to our neighbor. He said "Did you (insert cuss word) call my son a retard?" The neighbor said "Im sorry about that I just wanted to piss of your wife." Maybe just Maybe he will leave my baby out of it next time. I won't let it slide!
      I was amazed that this was once a friend who we trusted around our kids that would do a low blow and get an innocent baby involved. Later that night I sobbed and sobbed! I replayed what he said over and over AND OVER in my head time and time again. I questioned if I should of gotten the police involved but that following morning when I went to Masons room and got his smiley face out of his crib, bringing him back in my room I held him tight and I knew I did the right thing. No he wasn't arrested but hopefully he learned that he shouldn't call an innocent child a retard!


                 Courage is fire, and bullying is smoke.

"If you dont mind me asking..."

      One activity our family enjoys is swimming. One day we decided to go swimming. The minute we walked in there was this little girl with reddish blonde hair that walked right in front of Mike and I as we were walking to lay down our towels. As we got to the area to lay down our stuff I said quietly to Mike. Did you see that little girl? He gave me this look like "SO?" and I said she has down syndrome. Again I got another look and he said "You don't know that, What if she doesn't?" I gave him an I'm certain kinda look. Dylan ran  in the water there were tons of kids in the pool but he started playing with the little girl.
       Mike was still not convinced but I knew. As we were watching Dylan and this girl this lady looked right at us. I figured she was probably her mom. Through time the lady was watching Mason then shortly she came over to me and said "How old is this little guy." I told her he was 14 months old today. I asked how old her little girl was and I pointed at the little girl playing with Dylan. (she had 6 kids with her total.) She said "My little downs girl? shes 8" As we were talking I said "Shes to precious I have been watching her only because this little guy was also born with Downs." She nodded as if she already knew. As I continued to talk to this lady who was much older then I was she continued to share her story. She told me her daughter Rose Elizabeth is her step daughter, her real mother abandoned her.
       I figured because she was 7 years older then Mason she probably had far more experiences with doctors, therapist, and the down syndrome community period, but that wasn't the case. She said Rose Elizabeth started therapy just 2 years ago and had never had any kinds of therapy before. So her step mom told me she is far behind on alot of spectrum's that she does several therapies a week. With her sharing her story of course I shared Masons story also.
       It was rather refreshing talking to someone whose days are a lot like mine and she was from this area as well.  She was asking me several questions about who we work with, who I like, suggestions and so on. I was pleased I had lots of information to share with her. She also had some information about the Denver childrens hospital I've been curious about bc they have people who specialize with children with downs.
      As we were talking I was watching Rose Elizabeth. She was running around in the water, pushing her older brother under the water, giggling, splashing Dylan. I wish I could say people weren't staring at Rose but it was very clear they were. I of course was watching her out of complete curiosity. What is Mason going to be like? Right now he is very shy, is he going to be running around interacting with the other kids like Rose when he is older? Watching her she put a smile on my face she was to sweet and Dylan loved her and invited her to our house.I enjoyed talking to this lady, she was very kind and understanding. Hopefully we will meet again. :)

     

Music baby!

       As Mason is getting older we have noticed he is very sensitive to sound. If someone laughs loud, or hollers to get someones attention Mason will cry. Mike and I would take Mason to restaurants, malls, or busy places to see his reaction. If it was noisy or a lot of commotion Mason would scream uncontrollably. Mike and I were discussing his behavior because this little guy hardly ever cries, and we came to the conclusion to buy earplugs. Mason was perfectly fine in public places if he had his ear plugs in. Now I carry a little container in my purse and we put them in when we plan to be somewhere busy, and loud. We feel we shouldn't keep him from places because he is uncomfortable but instead try to help him adjust and get used to  this crazy world. I haven't spoken to his doctor about this just yet but I plan to at our appointment next week, but for now it is ear plug time! 
     Music! Mason LOVES his music. I love to sing, dance, and jam out to music. Mason is familiar with music probably from when he was in my tummy. Music is one of my favorite things in the world so its safe to say there is music playing all day everyday and outburst of me singing no matter where we are.
       Riding in my aunts car Mason started crying, I asked my aunt "hey, will you turn up the music?" then he was silent. I also sing to Mason... ALOT. He was playing on my grandmas floor, and I was singing quietly, Mason stopped what he was doing, turned to face me. So I sang louder, then he smiled and started dancing. My grandma said "Do you know your mommies voice or what?"  His big brother did the SAME thing. He could be crying, I would sing and he would smile. 
      His dancing is something new so of course when the therapist was here the other day I had to show them his moves. I started singing and Mason started dancing. The ladies thought it was the cutest thing. I asked them how old Mason has to be to start music therapy, and I was told he can start after one. His caretaker said " I think this would be a great therapy for Mason, We have a child in our program who is older and wont listen to his mom but he reacts to music. So his music therapist suggested for the mother to sing what she wants him to do, and he found it fun and responds to her with no problem." she also told me "there was also this little boy who wouldnt walk, he had a walker but refused to use it. He started music therapy, and his therapist brought a drum and would hit the drum every time he would take a step, this worked very well for him and was walking with no walker on his own." 
      As we continued to talk about music therapy it sounded better and better to me. My reasons of wanting to do music therapy... 1. We love music  2. Mason is very happy when music is playing and I feel this would be a way he can express himself. 
       Mason is VERY shy especially in public. He has to be held and he will lay his head on me for comfort. Tonight we went to a concert, of course it was very loud, very crowded. He had his earplugs, his blankie and was held through the concert. As long as he had his earplugs the screaming didn't bother him. Of course being in a crowded area people notice Mason and say how cute he is and talks to him. Hes less then impressed by strangers, and he has to stare at everyone to make sure they don't touch him. The music started playing then he could careless about all the people and before we knew it he started dancing. He enjoyed the concert. Tonight was his second concert and he loved every minute of it! 
      My song I sing to Mason daily is "I'll be" by Reba McEntire. I love her and most importantly love the message. : )  
                                              When darkness falls upon your heart and soul.

I'll be the light that shines for you.
When you forget how beautiful you are
I'll be there to remind you.
When you can't find your way,
I'll find my way to you.
When troubles come around,
I will come to you.


I'll be your shoulder when you need someone to lean on.
Be your shelter.
When you need someone to see you through.
I'll be there to carry you.
I'll be there.
I'll be the rock that will be strong for you.
The one that will hold on to you.
When you feel that rain falling down.
When there's nobody else around.
I'll be.


And when you're there with no one there to hold.
I'll be the arms that reach for you.
And when you feel your faith is running low.
I'll be there to believe in you.
When all you find are lies.
I'll be the truth you need.
When you need someone to run to .
You can run to me


I'll be your shoulder when you need someone to lean on.
Be your shelter.
When you need someone to see you through.
I'll be there to carry you.
I'll be there.
I'll be the rock that will be strong for you.
The one that will hold on to you.
When you feel that rain falling down.
When there's nobody else around.
I'll be.


I'll be the sun.
When your heart's filled with rain.
I'll be the one.
To chase the rain away.


I'll be your shoulder when you need someone to lean on.
Be your shelter.
When you need someone to see you through.
I'll be there to carry you.
I'll be there.
I'll be the rock that will be strong for you.
The one that will hold on to you.
When you feel that rain falling down.
When there's nobody else around.
I'll be.

Sensory disorder?

      As Mason is getting older we are noticing change. He is old enough to let us know what he likes, what he dislikes and what he wants. Not by speaking but through other ways. Our family will be sitting at the dinner table and if Mason watches someone take a drink and if his drink is not right in front of him he will spit out the food in his mouth, look at what he wants and make this particular annoying sound. Sounds like he is clearing his throat. My family thinks it is so cute but Mike and I hear it daily, several times a day so we find it less cute. My uncle was eating ice cream, gave Mason a bite I told my uncle to wait a second, then came the sound from Mason letting my uncle know he was ready for another bite. ha ha 
      We were home visiting family and my cousin was sitting on the couch, took a drink of her soda. Mason then started crying, I knew he was looking at her but didn't know she took a drink, so I said "did you just take a drink?" she replied "yes" he was expressing he to wanted a drink. I got him a drink and he was fine. My cousin felt bad and also thought it was funny at the same time.
      Mason isn't vocal just yet but he will find a way to let us know what he wants. During meals if he doesn't like something he will spit it out. If I try to give him another bite of the same food he will whine to let me know, So I try something else and he is fine.
      Ever since Mason was little little, he would be very sensitive to touch. If I put something in his hands he will instantly pull away not wanting that object. Now that he is older this has become more of an issue and he is making it more noticeable.  My aunt took Masons hand and placed it on a milk jug while we were watering flowers, he pulled away. She put his hand on a tree trunk and he wasn't impressed with that either. He pulls away quickly as if he is scared. If you continue to put things in his hands or have him touch things he will cry. 
      I decided to research if this is common or needs to be looked at. As I was researching these kind of behaviors I became concern. There was a list that said the following...

• Excessive mouthing of objects,
• Decreased or no purposeful play with toys,
• Staring directly into lights,
• Abnormal hand movement (such as flicking fingers in front of eyes or waving hands away from body),
• Refusal to hold objects (such as clothing or a spoon to self-feed),
• Self stimulatory behaviors (such as rocking, banging head, humming or screaming), and
• Decreased interaction with people

As I read these I realized Mason does each one of these. The rocking has been his newest we have noticed. He will bang his head on things. I mentioned these things to his occupational therapist, she wanted me to talk to Masons doctor and we decided to set up an evaluation to start a sensory therapy. This kind of disorder is often found in children with autism.

      Mike and I decided to buy each one of the boys a puppy. They are 8 weeks old now. Pets are a good way to establish responsibility for a child Dylan's age (6) and we thought Mason would chase the puppies around and would be a motivator. Also bought the puppies because dad is getting ready for hard core training, and deployment. Need to keep the boys busy. 

      When Mason first met the puppies he was less then impressed. We would sit him on the floor and the puppies would come to him. He would instantly put his hands on his face, then turn away and crawl (his worm crawl) as fast as he could to get away from the puppies. He wouldn't cry but he didn't think twice about what his next move was going to be. He doesn't want to touch the puppies and he absolutely doesn't want them touching him. We have had them about a week now and when they come up to Mason he has learned to push them away. Not aggressively but defending himself. Im trying to teach him to say "no puppies no no!" 

      Our next step is talking to Masons doctor and doing an evaluation to see if Mason has a sensory disorder. I will keep updated. :)

Fun being one!

       I can't believe this sweet boy is one. When I walk into his room there is a big smile with 2 hands reaching up. Everyday he seems to be growing in some way.



      Mason got a ball pit for his birthday from friends, we bought another 100 balls and he LOVES his ball pit. I will walk to the ball pit holding Mason and he lunges towards the ball pit. He likes to move around not sure if it is the feeling or the sound. He also will grab a ball, hold it to his mouth and make a "ba ba ba ba" sound.



Sunglasses 101:
So I had this grand idea to teach Mason to keep his sunglasses on because I wanted to switch from the sunglasses with a strap and the regular sunglasses. So I had a little talk to him, it went something like this "okay bud...see these...these are COOL, it is important to accessorize soooo it is important for you to keep these on your cute little face.
As you can see that left hand headed towards his glasses to remove them my sunglasses 101 was a fail. It turned into a game. I put them on... he took them off...then giggled at me.

Shoes...For some reason he doesnt want to wear both of his shoes...one is plenty in the world of Mason. He has more shoes then I do but he is barefoot often. We play a constant game of "nooo Mason keep your shoe on." or walking into a store and a lady runs up behind us and says "excuse me? Is this your sons shoe?" and it always is. just one...not two.

Water Water Water!!!! Mason LOVES water. He loves his baths, to swim, loves sprinklers, and the other night we took him to an aquarium in Denver Colorado and he was excited to HEAR water.

     Everyday Mason is learning something new and turning into this sweet little man! : )