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. :)