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...