" A Cold to you could be an pneumonia To Mason"

      Well its the typical cold season. The cold in our house started with Dylan. Bloody noses, runny noses, coughing that leads to throwing up, sneezing, and a small grade temp. Warm baths, vicks, tylenol, cold meds fixed him right up. After sickness is in our house I wash bedding, scrub everything in Dylans room, and Lysol becomes my bestfriend. I dont worry when Dylan gets sick.
       Mason getting sick on the other hand is a WHOLE OTHER STORY I learned. One Night I heard Mason choking, I shot out of my bed ran to his room saw he was shaking, and choking. I instantly picked him up he got sick down the front of me, down the back of me, and the few seconds he wasnt throwing up he would scream to the top of lungs arching back away from me, pushing with all his might. He continued to shake. He was SCARED! I havent seen Mason like this ever so it was one of those moments tears roll down my face and I continue to tell him "Its okay buddy" If your a  mom you KNOW the worst thing is when your baby is sick.  I checked his temp it was a low grade fever 100.3. Considering this isnt my first rodeo I have been a mom for 6 yrs now. I ran a bath for Mason, let him play, gave him some tyelonol, snuggled and rocked him. He fell asleep. It was a long night as him getting sick was constant.
      When Mason was first born we were told from a doctor that he will have respirtatory infections often, he may suffer from constant colds, and ear infections. She could guarentee he would have tubes put in his ears. She also said a cold to us could be an pneumonia to Mason.
      Mason will be 9 months old next week. He has not been sick yet. No he doesnt have constant colds or even an ear infection. Mike and I joke about Mason being healthier then Dylan was. The first year of Dylans life he was sick CONSTANT. He had RSV, Ear infections, runny noses constant. There was Always something with that boy.
      The next day Mason was done throwing up but started having this horrible cough, runny nose and had a temp of 102.5 Off to the doctor we go! Maons doctor walks in talks directly to Mason "Mason Mason I just saw you last week and told your mom how healthy you are." He asked me about him coughing, getting sick..ect Mason started coughing and his doctor said "Croup, Mason you have Croup" He explained to me that his cough is like a "barking" sound and that is Croup. He put him on Steroids for that. He checked his ears and he had a double ear infection, was put on antibiotics for that. He asked me "Has your family had a cold?" The answer was yes. He said this is Masons version of a cold. His immune system doesnt fight of your typical cold as fast so it turns into something more.
      I told his doctor this is the first time he has been sick and he was impressed. He said "Hes 8 months and hasnt been sick thats great for ANY baby." I couldnt agree more. He told me about his meds, and also told me if he has a coughing fit, Take him in the bathroom crank your shower as hot as you can get it, sit on the toilet holding mason and that will break it right up. He said bring in your husbands dress uniform let the steam do its magic on that while your in there. HA HA.
      Medicine, baths, alot of rocking, alot of cuddles, alot alot of pedialyte and Mason is back to his smiley happy self. : )

eye opener..

      Before I became an army wife I didn't really pay much attention to details about the army. Sure I noticed a man in uniform I mean I AM a girl but as far as what they did, the sacrifices they made, the shit they put up with on a day to day basis I had NO idea. Now my world revolves around the military. So now I am part of them sacrifices, I hear about all the shit they put up with on a day to day basis, and of course I hear about my soldiers job, what they do, what they are expected to do and so on...because this is now my world.
       A while back I was on a walk with a friend and I remember saying to her " I had NOOO idea there was so much advertisement about Down Syndrome, or Actors who have Down syndrome or the jokes that are made about Down syndrome on movies. Now I swear that's all I see, or hear about. Am I bad person I didn't notice these things before?"
     We talked about how until something is brought to your attention you don't really give it much thought. She was right this was an eye opener for me. Now that I live and breathe this life I notice the good the bad the ugly. The good being this beautiful baby a gift from the lord that has taught me patience, how to appreciate the little things, and how to love unconditionally.
       The bad would be turning on a movie and with in the first 30 minutes there is a joke about downs. For example the other night my husband and I were watching the Change up with Ryan Reynolds. Ryan  looks at this baby and says "he looks a little retarded is he?" the dad replies no and Ryan says " Not even a little downsy?" I know I know its a movie I get it but cant help but think would I laugh at this before Mason? Would I even notice that was said? I cant tell you how I would of reacted before Mason but I know now that when something like that is said I instantly go in mother bear mode and want to protect my cub. After this was said I looked at my husband, he looked at me and we both rolled our eyes not a word was said.
      I can't change what other people say or do. I can only change what I think, what I say and how i act, this is my world now and my eyes are open and if your a follower, or a supporter of Mason please be aware of your actions as well it can make a difference.

The power of touch

      Talking to the therapists I informed them I wanted to do anything and everything I could that is offered for Mason. A whole list of things were mentioned, and suggested but one thing that stuck out to me was baby massage. The occupational therapist told me the benefits. She listed off the following...

Increases circulation

Strengthens the immune system
Improves sleep patterns
Increases weight gain
Relieves congestion
Encourages parent-Infant bonding
Increases body awareness
assists with reflux (which Mason has) 
Improves motor development

Improves muscle tone (hypertonicity)

      The ones highlighted where the main reason I didn't hesitate to say yes. She told me her sessions would be longer if I chose to do the baby massage. But I didn't care. 

      The first day we did the massage the therapist had a baby doll she was wearing a knitted hat another mom made for her. She sat her doll in front of Mason and he took off her hat. We put the dolls hat back on and Mason took the hat BACK off. ha ha

       The therapist told me she was going to do the massages on her doll and I will do massages on Mason. She gave me all natural oil (had to be safe bc his feet are in his mouth often.) told me While rubbing my hands together  tell him it was time for a massage. She said he will eventually learn that when rubbing my hands together he will know it is massage time. 

         At first the therapist wasn't sure if he would stay still because he moves alot. But she was wrong. I started rubbing his legs (his chunky legs that is) ha ha. He stopped moving, stared at me, and smiled. I could tell he loved it! I did different techniques the therapist was showing me. Starting with his legs, then feet (which was his favorite), tummy, arms, hands, head, shoulders and ending with his face. He was so relaxed and loved every second of it. 

          Another occupational therapist bought me a baby massage book. I thought that was so kind and thoughtful of her. It has all the techniques, benefits, pictures to show me how to do different massages. Im sticking to this because Mason LOVES it and it is proven to be beneficial.

         For those who have babies 0-3 yrs old this is beneficial for your children as well. I would highly recommend it. The book is called  "The practical Art of Baby Massage" by Peter Walker. 

          After the massage the occupational therapist worked with his posture, watched how he rolled. He showed off by showing her he can stand at the coffee table for a few minutes. she said "Mason you do so great I maybe out of a job" We then showed her how he drinks capri sun from a straw. She said he has GREAT muscle tone around his mouth and she was more then pleased that he could drink from a straw! 

           "Touch the body. Calm the mind. Heal the spirit."

Answered Prayers

      As a child you look to your parents, older relatives, and teachers for answers. When you become a parent you realize you dont have all the answers and you look to others to find them. The saying "you learn something new everyday" has been multiplied since having Mason. I never thought I would have to learn the things I am learning or thought I would have a fear of not knowing. I also never thought there was a "perfect" doctor. I have a very healthy family, we don't get sick much at all and the only time we go to the doctor is for checkups. So finding a "perfect" doctor wasn't a priority. Until I walked in the world of the unknown, until I was handed this precious boy who was labeled as "Special needs" "Mentally Retarded" "Delayed" "Downs baby" I quickly learned I needed to find that "perfect" doctor. 

      Masons home nurse asked If we found a good doctor I was quick to say "absolutely not" I told her how we have been from one doctor to the next, have had the run around. Either we were sent to someone new bc the doctor didn't have any experience working with a baby who has downs, Or we didnt feel comfortable with the doctor because of lack of experience, or there was major lack of compassion. 

      Before walking into each doctor appointment, before any therpist appointment, every morning and every night I say a prayer, a specific prayer for those babies, kids, and adults who have to go from one doctor to the next, who has to get tested for several different medical needs, who does weekly physical,speech, occupational therapys. I pray for those parents who have kids with special needs to fight for their child, to find the best for their child, and most of all to keep faith and strength. I pray for those bullies who dont realize one simple word like "retard" is hurtful and they dont realize what these kids go through on a daily basis. I pray for a great therapist for Mason who have the answers, if they dont they can find the answers, who are supportive, who have compassion for their job, and can push Mason to his full potential. And my last thing I pray for is a "prefect doctor" who has all the answers, who has compassion, who wouldnt mind a home phone call If I have a question and is reliable. 

      Mason has AMAZING therapists, and an AMAZING home nurse. After telling his home nurse about our experiences I asked her if she could go to his next doctor appointment with me to help me get the answers I needed and to push for a Great doctor. She didnt hesitate. This morning I met Masons home nurse at the clinic. We already discussed a game plan on what we needed answers for, and further look into other medical needs. 

      About 5 minutes into Masons appointment I realized I have found that "Perfect" doctor!!! He had the answers, the experience, told me to call him any time, who adored and talked to Mason like a friend, and was straight to the point. LOVED LOVED him. Now as a parent I found a person who DOES have the answers!

Accomplishments and Goals

I thought It would be fun to write about our goals, and Masons accomplishments and share them with Masons family and support system. I have the caregiver send me copies of EVERYTHING she writes down...so needless to save I have ALOT of papers... lol

                                     Mason 7 months old:
                                        Communication:
What he does:                                          6 month  Goals:                              
Makes Raspberries                              make strings of constant
Squeals                                                vowel sounds
"ma da ba" sounds                                be able to say one
 very quiet                                            word the family understands
                                                            use sign language
         


                                           Strategies:
                                continue to imitate his sounds
                                    play in front of a mirror
                           continue modeling sign language for things


                                          Fine Motor:
What he does:                                         6 Month Goal:
Will hold a toy                                        Hold his own bottle
Swing a toy
reaches for bottle and puts his hands on it briefly
bats at hanging toys

                                          Strategies:
                 parents continue to do hand on hand with
                 Mason to hold and shake toy, rattle
                 parents continue to put hand on bottle when feeding

                           
                              I have my own goals:
                            In 6 months be able to crawl
                                 sit up alone
                             sign at least 5 words
                             say at least 3 word
  If he cant, he cant but I believe he will be able to do these things!
                                We shall see! : ))

Time to conquer this eating thing...

      One day I was talking to a therapist, told her Mason screams in the middle of eating. He will eat a few bites of something, scream so hard that I give up and give him a bottle.  I first thought he was impatient and I wasn't fast enough feeding him. I also thought because he was on medication for re flux maybe it hurt him eating something other then milk. 
      She started telling me that babies with Down syndrome have low muscle tone (which I learned that before he was born) she said with low muscle tone it also means he may have hypo-sensitivity/Hypo-responsivity to touch, taste and smell. She told me that he probably cant taste the foods I was feeding him and it can be frustrating. She continued telling me I needed to feed him things I would NEVER think of feeding a baby. She named off things that made my mouth drop. Lemons, Limes, spicy foods, hot peppers, pickles and so on. It must of been the look on my face that caused her to continue to explain why he would like these things. She said they are strong tastes that would make any other baby make a face but it will be a taste Mason will actually be able to taste and will encourage him to chew also because he can perceive there is food in his mouth. 
      She told me it sounds crazy but to give it a try. She was absolutely right it sounded crazy. When Dylan was little  my husband and I would let Dylan lick a lemon to see his body shiver, and watch him make the craziest faces. I never thought I would actually feed a baby these things. 
      well here is goes... Off to the grocery store that very same day to stock up on everything she listed. I got home put Mason in his bumbo, reached in the pickle jar grabbed a pickle and let Mason taste it. There was no crazy faces made, he LOVED it. I cut a piece of lemon let him taste it, again with no face! I COULDN'T BELIEVE IT! I then got out a baby food jar, he ate a WHOLE jar without a scream! I was amazed! Thank you therapist!!! Eating is no longer a struggle! :))
      

The upside of Downs...

• The "R" word is used often and without thought usually referring to something someone considers to be "dumb" or "stupid" The word is hurtful, unkind, and disrespectful. Keep in mind that what and how we say things show others what we believe. All individuals are deserving of respect. 
• A person with down syndrome does not "suffer from" is not a "victim of" down syndrome it is not a disease. Saying these things are diminishing to an idvidual who has downs.
•  
• Remember a person IS NOT defined by their disability. He or she is a person first and for most. So dont refer to a person as a "downsyndrome baby" or "downsyndrome child"
•  
• Saying such things such as "They are so loving" "they are Always happy" or they tend to be stubborn" its only when we get to know a person we really know what they are like. Dont stereotype.  

Make a difference! The Up side of Downs : )

I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something I can do.

My husband and I recently welcomed a little guy in the world that has Down Syndrome! This brown hair, blue eyed beauty name is Mason! :) I wanted to share with those who I inspire, those who love Mason and those with caring, kind hearts...we recently became a part of donating money towards Down Syndrome Awareness, to educate more doctors, better educational programs, also a cure for Down Syndrome not only for Mason but for those who also have down syndrome!
Let me know if you are interested in participating I would LOVE to send you information! 

PoEm

I cant take credit for this poem I did not write it however I DO love it and hope you enjoy. 

I pushed my little baby out, 

they handed him to me. 

I looked into his tiny face, 

he was as perfect as could be. 

Then the doctor said “Down syndrome”, 

and my joy turned into fear. 

How could he have Down syndrome, 

for he was so sweet and dear. 

His perfect hands, 

his tiny feet and chubby little toes. 

His jet black hair, his dark brown eyes, 

and little button nose. 

They have to be mistaken. 

The diagnosis just can’t be. 

Then they handed me the test results, 

and it was plain to see. 

My baby has Down syndrome. 

Those words cut like a knife. 

My baby has Down syndrome, 

and he will for all his life. 

I cannot make it better. 

It will not go away. 

But I can continue to love him, 

with every passing day. 

For God gave me a child with Down syndrome, 

as it was in the plan He had. 

And as time goes by I realize, Down syndrome isn’t bad. 

My son has filled my heart with love, 

and brought me so much joy. 

He is my little angel. . . . . . . my perfect little boy!!!! 

Love, 

Mommy

"yaaay Mason"

One day 7 therapists were in my house at one time. They wanted to do an evaluation to see where Mason was on his motor skills, fine motor skills, speech, and growth. To say the least I was a bag of nerves. Not so much worried how Mason would do but how 7 people were goin to give me feedback. I only had past experiences to go off of and well lets just say thats why I was freaking out!!!!!!!
 The door bell rings and it looked like I was going to have a party. 7 Ladies single file line standing outside my door as each one walked in shook my hand, introduced themselves, and told me what their job was. I put Mason in the middle of the floor while all the therapist sat around him with their clip boards, and pens. The caregiver already informed me how the evaluation was going to work. They were going to test different things on Mason, and ask me a MILLION questions. At first they couldnt believe how cute and big he was. I thought that was funny because compared to other kids his age he was in the lower 15% but with kids who have downs he is in the 90% I found out.
      It began...one of the therapist pulled out these little blocks and wanted him to grab them. He showed no interest. She asked me if he grabbed for things and I said sometimes but not a whole lot. I told her he loves this little piano rattle she asked me to get it. He reached out with both hands and grabbed it. Everyone clapped for him. And naturally when I find something that works I buy 2 of. So I got the second one out and he grabbed that one also. The same therapist laid him on his back, he flipped right over. She praised him. She stood him up and he could bare all weight on his own which was great. I told them he LOVES to stand and LOVES his bouncy horse. I continued to tell them how he has figured out how to rock himself and he knocks himself sound asleep every time. They wanted to see how he was in his horse. I put him in it and he instantly smiled and began to rock. They told me that is great for him in many ways. It has things for him to grab at, it makes sound when he moves it so it encourages Mason to keep moving, and it strengthens his muscles.
      I got him back out and put him on the floor, he was laying on his back. A therapist grabbed his hands to see if he could pull himself up to sitting position and sure enough he did. He can sit by himself with the support of his hands and can sit alone for a short period of time. I got positive feed back left and right. I was loving it! I put him on his back, pushed his legs up to his bottom, flat on the floor and Mason raises his bottom up. Again with more praise and positive feedback.
     The nurse asked me several questions, and did a short eye exam which she said he did great could follow her up to down, side to side, and could cross his eyes. She was a little worried with his hand eye coordination so she suggested to see an eye doctor for a follow up. (when he tries to grab for something he swings, and misses every time)
      The speech therapist said he was pretty quiet, asked me if he laughed I said only when he is tickled. she asked me if he makes "ba ba ba ma ma da da" sounds and the answer I gave her was only when he was tired. Mike and I call that his night night song. She said he should be making alot of sounds at this point and she would like to see more sounds. I did tell her he does high pitch squeals and blows raspberries all the time. That was great news she informed me.
      The occupational therapist was concerned with his fine motor skills. He doesn't grab things as often as he should, he has lack of interest in toys, he didn't turn when his name was called out, he doesn't feed himself and so on.
      After a million questions, a hundred different tests the therapist came to the conclusion he was 30% delayed. After that number was thrown out to me they said he could be seen every other week its up to me. I told them weekly bc he hasn't started any therapy. The only things he knows are things I have worked with him. I'm not a therapist, not a doctor, just a mom who is shooting for the moon of endless possibilities.
      I was told several times Mason was in good hands and he was doing great!! :) I know thats their jobs but I WILL TAKE IT!

Growing boy...

it begins...

      I grew up in a small town where there wasn't a  lot of kids with special needs because there wasn't the resources they needed in the area, I don't have anyone in my family with special needs, or in my husbands family. I have never known a person with Down syndrome so bringing a precious boy in the world with Downs is very scary because I'm uneducated in this area. So I thought it was time to educate myself  I  read several books on kids with downs, their rights,  raising a child with special needs, other parents stories, I also talked to several other parents who have babies with Down syndrome (which was more for my support so I didn't think I was crazy and alone.) I quickly found that support was a priority because people who don't walk in my shoes  on a daily basis can shrug my feelings off, tell me they know how I feel (they couldn't possibly) and down right judgemental. 

      After doing my research I learned what Mason needed and what the military would provide. I got a phone call that I will be forever grateful. It was from caregiver, shes the one who decides all the care Mason needs and gets a team together basically shes the one with the answers to my questions and she takes care of business.Before she contacted me I made several calls, was given the run around, not getting answers and was feeling defeated.

       The day she first came to my house I filled out paper work, she asked me what I was most worried about. INSTANT tears, I held Mason close to my body and said "we moved here 3 months ago and I haven't been able to get answers, He hasn't started any therapy I'm upset, angry and worried"  She got up, got my a Kleenex, calmed me down by saying she can see that he is in good hands also just by  looking at him she could tell I have worked with him a lot and he is doing quite well. She promised me she would get everything going ASAP and god bless her she meant it. Before I knew it I had an occupational therapist, home nurse, physical therapist, speech therapist, care taker,developmental therapist in my house for weekly visits. I instantly felt a sense of relief and a HUGE appreciation to Masons caregiver.

Keeping the door shut...

When our door is closed we see Masons progress and we are SO proud of how he is doing and this adorable little guy he is becoming. Sometimes we open our door we see other kids younger then Mason crawling, starting to talk, standing, much bigger in size...some walking or just the little giggle we dont hear from Mason yet. A Sadness, and a  little jealousy comes over me. Everyone tells me "DONT COMPARE, DONT COMPARE"  but I would like to say its easier said then done. I know these feelings are normal and hope one day these feelings will go away.    This is a poem that is dear to my heart that I read often... I think I posted it in my blogs before but I feel like sharing again.                
                                                             My face might be different

But my feelings the same

I laugh and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As god in the heavens

Looks down from above

To him I’m no different

His love knows no bounds

It’s those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I’ve chosen

Will help me get started

For I’m one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It must come from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I’ll do as you do

But at my own pace.