Bye, Down syndrome

If I could take away the fact that my daughter has Down syndrome, would I?  That's a hard question for me to answer. 

There is a fairly new prenatal screening that can be done on expecting mothers as early as 10 weeks, it's called the MaterniT21 Plus Screening.  This prenatal screen is a new blood test offered through Sequenom Center for Molecular Medicine and is designed to detect increased amounts of material from chromosomes 21, 13 and 18.  Giving parents a 99% detection rate for Down syndrome, with no risk to the pregnancy.  Which means.....parents can now find out earlier, safer and with more certainty if their baby will have a chromosomal abnormality and more time to decide where to go from there.  But what does that mean, "where to go from there?"  To be better prepared for the arrival of their child who may need immediate medical attention?  Or just to be more informed about Down syndrome and educate yourself and your family about this new baby coming into your life?  Or to terminate a pregnancy that no longer seems perfect?  More time and certainty for what exactly??? 

This is where I have a problem with this new test.  I'm all for being prepared and knowledgable about what is going on around you, or inside of you.  But I also know that some medical professionals themselves aren't relaying accurate information about what it means to raise a child with Down syndrome and how amazing their lives truly can be as they grow up into adulthood.  Possibly swaying an already saddened, scared, anxious mother, who only wants the best life possible for her child and possibly feeling like Down syndrome could be a death sentence, for everyone involved.  I didn't have prenatal screening with either one of my girls.  I didn't think I needed to be concerned about anything, and no matter what, my decision would have been the same regardless.  But when I did find out that Sophia had Down syndrome, shortly after her birth, I was given the news as if my baby had just died and my life was over.  It was dark and sad and awkward listening to the doctors tell me that Sophia had Down syndrome.  It never should have been like that, but I was one of the many lucky ones who got to take my baby home and fall deeply in love with every last chromosome God gave her. 

So, if I could take away the fact that Sophia has Down syndrome, would I?  Not if it meant that I would no longer have Sophia.  The effects of Down syndrome like; low tone, increased health issues and intellectual delays, do kind of suck.  I don't want my children to have a harder life than they probably already will, but that's life, it's unpredictable.  I wish that things were easier for Sophia, but I also get so much joy from watching her strive to achieve her goals and when she succeeds....it's a freakin party every time!  The truth is, because Sophia has Down syndrome, I have learned so much more about life, people, love, compassion, respect and understanding of other people's situations.  I understand that we all are walking a hard road in our own lives and it's not for me, or anyone else, to judge another human being.  Sophia, like so many other individuals, is exactly who she was meant to be, and I wouldn't change that for the world!

Captions

"You're crazy if you think I'm going to use this potty!"  Sigh :/

"I swear it wasn't me this time!!!"

"This is my dinner." :)

"Man, I'm exhausted!"

"I wonder if I can fit my face through these posts?"

"Fine, hurry up and take the picture!"

"Get over here and hold my hand, sissy."

"This is what I think about your camera."

"I will make myself fit into anything!"

"Check me out, Mom!"

"Concentrate, concentrate, concentrate."

"I just want to eat my Doritos in peace."

"I may have to take a crap."

"It's way to early for this sh*t!"

"SEE FOOD!"

"Get out of the way, I'm trying to watch Barney!"

Sick Baby

Sophia isn't feeling well.  She hasn't been feeling well for 9 days now.  It all started a week ago Friday with a fever.  She contined to have a fever for most of last weekend and then it finally broke and the head cold symptons kicked in.  Coughing, runny nose, watery eyes and just feeling like crap.  By Tuesday I decided we needed to see the doctor and find out what was causing all this misery.....an ear infection and the common cold.  So we got an anibiotic and headed home to start feeling better.  But almost a week later, she still isn't feeling better :(  She still has a mild cough here and there and a runny nose, which is clear, but the miserable, tired little eyes that look back at me time and time again throughout the day, tell me that things still aren't right with my baby girl.  One minute she will be happy and running around like nothing is wrong and then in the blink of an eye she becomes possessed and this cranky, miserable, can't do anything to make her feel better, baby comes out and all the happy gets shot right out the window and misery sinks in...for everyone around.  There has to be something else going on, something else making her feel and act this way, but what???  Oh the joys of having a non-verbal child :/

Times like this, when something isn't right with my baby girl, but she can't find the words to express to me how she feels, sucks!  I hate thinking that something is wrong, like really wrong, but Sophia can't get those feelings across to me to let me know and I can't see clearly enough to know what could be happening right in front of me.  It truly is the worst feeling in the world. 

When it comes to Sophia, my mind races in a million directions when she gets sick.  I immediately start thinking worst case scenerio and a thousand "what if it's this?" pops into my head.  I almost drive myself into a panic thinking that something bad is happening in her little body and I'm doing nothing to help her, because I just can't read the signs fast enough.  Sophia has had medical issues in the past.  She also has a few, mild issues that continue to linger now, but with her diagnosis there are also many medical things that could pop up more so in a child that does have Down syndrome, than a child that doesn't, and that scares me!  It's always in the back of my head.  What if Sophia is like that child that I just read about last week.....What if one day she's fine and laughing and playing and the next day she is literally fighting for her tiny life :(  It consumes me some days.  And I hate feeling like this.  I just want her to scream, at the top of her lungs, "THIS IS WHAT IS GOING ON WITH ME.........!"  But the truth is, she can't.  Praying my baby girl starts feeling better, SOON!

getting some rest with her baby...

       

Who are you?

Since I became a mother, and the older I get, I find myself more and more curious about who the woman is that gave birth to me over 32 years ago.  Up until Jayden was born, it never bothered me.  I never had a desire to find out anything about her.  I've always been perfectly content with knowing that I was adopted, and for whatever reasons my biological parents didn't feel like they could raise me, so they put me up for adoption, and gave me the gift of a better life.  And because of that, I am forever grateful.  I was blessed with an amazing family and extended family, who have loved and supported me all my life.  I couldn't say "thank you" enough to this woman who selflessly put my needs ahead of her own.  If for nothing else, I admire this mystery woman for that alone. 

I think my curiosity really hit after Sophia was born.  Even though me giving birth to a child with Down syndrome has nothing to do with my family history.  Sophia doesn't have translocation Down syndrome, which would mean Randy or I had some rearranged genetic material and passed that on to her.  However, she still had a lot of health issues, all associated with that extra chromosome she sports so well, but still all the forms always ask...family history???  And the best answer I can give is, "I don't know?"  I hate that.  More and more, I hate that.  That not knowing if there is something in my biological family that could affect me or my girls sometime in our lives.  I want to know about that. 

But honestly, it's not just about the medical stuff anymore.  It's about a woman, who in my mind, was young and not in the right place in her life to have a baby.  I imagine her being scared and conflicted in what the best choice would be for her and her baby.  I imagine a mother carrying a baby for nine months and bonding with that baby and the thought of how wonderful it could be to parent a child.  To have a lifelong companion.  To have someone to love and to love her back.  I imagine her dreaming of the fairy tale that she could have with this growing baby inside her, but then reality hits and she realizes that raising a child isn't all rainbows and flowers.  It's a lifelong commitment to another human being.  It's about sometimes putting your hopes and dreams on hold to do what is best for someone else.  It's about late nights and early mornings.  It's about working 24/7 for someone who rarely says thank you or appreciates any of the hard work that you do daily for them.  It's about making them your first priority, no matter what.  And at such a young age, I think that maybe she had bigger dreams for herself and more importantly, she had bigger dreams for her baby.  I imagine her wanting her baby to have it all, and knowing that that was something she wasn't able to give a child at that moment in her life.  So instead of subjecting her baby to a life of hardships, she chose something better for her baby, a life without her in it. 

I have no way of knowing if what I just described is really how my birth mother felt.  I just try to imagine myself pregnant as a teenager, and how would I feel?  Again, I have no way of knowing if these would be my feelings as a pregnant teen, because I never was a pregnant teen.  All I know is that my whole life has revolved around becoming a mother one day.  And if my dreams of becoming a mother had happened sooner than expected, I don't know if I could have given up my baby for the sake of him or her having a better life, without me in it.  And I find that to be a little selfish on my part.  Knowing that you don't have what it takes to have a baby, right now in your life, and giving someone who is ready to raise a child and maybe can't have children of their own, is the greatest gift a mother could ever give.  I thank God all the time for putting me in the arms of my mom and dad.  They have loved me unconditionally and guided me through life pretty successfully.  I am forever blessed to be exactly where I was always meant to be. 

I don't want another mother, I already have a pretty amazing one of those, but what I do find myself wanting, are answers to a lot of questions.  Does she still think about me?  What emotions run through her every year on the day that she gave birth to me?  Does she want to know who I am today?  What were the real reasons for chosing adoption?  But most of all I just find myself wanting to know, who are you?      

Random pictures

A few pics from the past couple months...

 

Looks can be deceiving :)  I'm sure she's about to be up to no good! 

Jayden's last basketball game.  They got to cut down a piece of the net :)

Thumbs up dude!

Waiting for the school bus

A bike ride on one of those rare warm days a few weeks ago.

Jayden :)

Oh these two....

Her body was her canvas :)

Lovin on her Great Grandma Mary (melts my heart every time I see them together)

And they hijacked her wheelchair......

The Security Blanket

Sophia is an extremely restless sleeper.  She is up and down and turned around all through the night.  Which means that usually I am doing the same thing :/  We had a sleep study done a few months ago, because we haven't had one since her tonsils and adenoids were removed over a year ago, and things came back abnormal, but not alarming.  Sophia has moderate obstructive sleep apnea.  Sleep apnea is a disorder that occurs when a person's breathing is interrupted during sleep.  Obstructive sleep apnea is caused by a blockage of the airway, usually when the soft tissue in the back of the throat collapses during sleep.  According to our doctor, this happens in a lot of people, but having low tone, like Sophia does, doesn't help matters any.  During the sleep study there were 19 obstructive apneas recorded and 37 partial obstructions recorded.  Even though Sophia's airway isn't allowing the proper amount of air to pass continually through the night, her O2 stats stayed above 92% the whole night with a mean saturation of 98.7% for the night, which is good. 

So where do we go from here?  Well, her pulmonary doctor gave us 3 options: 1. we do nothing, except keep observing her sleep behaviors and have another sleep study done in a year to see how things have changed.  2. We start using Flonase nasal spray and Singular at night to help open up her airways.  And our third option was using a CPAP machine.  Which consists of a mask that fits over the nose and mouth and uses mild air pressure to keep the airways open.

We've decided to see exactly what this CPAP thing is all about and see if it is even something that Sophia will tolerate.  If I had to guess I would say, no.  But we'll see.  After all she does have the tendancy to surprise me :)  I'm really not sure about the Flonase/Singular idea.  The doctor acted like it was another simple option, but some of the things that I've read, I'm not so sure I want to give her either one of these.  Anyone have any thoughts or insight on either drug???   

Overall when Sophia sleeps I don't notice a lot of alarming behaviors.  I mainly just notice that she is all over the place and constantly getting up through the night, making it a very long night most of the time.  This has always been my main concern, why is she always waking up and getting up throughout the night?  Is it because she isn't breathing well and waking herself up and then getting out of bed?  That could be some of the reason, but her doctor also pointed out, that we all wake up throughout the night, sometimes numerous times throughout the night, and we look around our surroundings, notice that everything is fine, and then go back to sleep.  Well when Sophia wakes up in the middle of the night, and looks around her surroundings, she is noticing that I am no longer there laying beside her, like I was when she first fell alseep.  Which for her is a big, red flag and she instantly must come find out where I am.  Because this little girl needs her securtiy blanket snuggled up nice and close to her at night.  Myself being Sophia's security blanket :/  I don't want to be her nighttime security blanket!!  Sorry, but I just don't.  So now I am back to trying to get her back into the habit of falling asleep solo, which at one time was not a problem, but apparently somewhere along the way, things changed.  It's a work in progress right now, but I have faith that this security blanket can break free and hopefully regain my rights to a full nights sleep, mostly uninterrupted and in my own bed for the night! 

Just Dance Baby!

Sophia was high on life, and music, and gave her "audience" quite the performance last night :)

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