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Is this the World We want?

Some of you may or may not have seen the articles and reports about Iceland and Down Syndrome.  Currently about 3-4 children with DS are born in Iceland PER YEAR!!  Yes, that’s right…each year only 3-4 amazingly special kids are given the chance at life.  Often times the only reason of these births occur is because the early screening was wrong.  Because of this, Down Syndrome is almost fully extinct in some countries.

Check out the article here: “What kind of society do you want to live in?”: Inside the country where Down syndrome is disappearing

Why is this important to us?  Because this epidemic is spreading.  These early screening are also being used in Australia, Europe and the US.  The need for “perfect children” is taking over the desire for life.  Doctors are pushing termination on new mother’s when they are uninformed and emotional.  I’ve spoken to a few new mama’s who said almost every Doctor appointment they have they are asked multiple times if they are sure they don’t want to abort.  This is horrible!!  The value of any life is not cherished anymore.

I understand, I know DS is NOT for everyone.  This is a lifelong, stressful, scary, and amazingly beautiful commitment.  But to say that Jana’s life is less valuable than our other children is ridiculous.  God has a plan and a purpose for her that is bigger than any of us can imagine.  She and all her other DS buddies make our world a better place.  Their determination, their tenacity and joy is contagious to those around them.  To eliminate them from our society would be detrimental to us all.

The problem is not these mama’s who are confused and scared.  All parents are terrified when they find out their child has something wrong with them.  The problem starts at Doctors who push termination.  Instantly they view DS as a defect that should be removed.  Instead of educating these families of the new progress the DS community has had.  Adults with DS are productive, happy members of society now.  Things have changed in the last 30 years and that should be encouraged not down played.

I saw on twitter a quote I want to share from actress Patricia Heaton (@patriciaheaton).

“Iceland isn’t actually eliminating Down Syndrome.  They’re just killing everybody that has it.  Big difference.”

We need to remember that ALL LIFE MATTERS!!  This shouldn’t just be a discussion of DS termination.  This is life termination.  Our lives are ambushed daily but the petition to be accepting, tolerant and loving to those around us.  But yet, when a innocent child is born with slight differences, we instantly want to throw them away.  Where is the respect for these tiny lives?  Where is the love for life?  downrightperfect

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Recovery

IMG_1336Peanut had her tonsils and adenoids removed on Thursday.  The doctor said it was successful.  During the procedure he did a scope as well…and because of that we will be monitoring Peanut a little more until a plan is in place.  Don’t want to go into details about it right now.  After we see him in September for her follow up I’ll bring you into the loop.  Right now we are focusing on getting Peanut back to 100%.

So far she has been doing pretty great.  We only stayed in the hospital overnight because she was eating and drinking enough.  We were actually incredibly surprised at how great she has been.  We expected the recovery to be horrible.  It seemed like things were progressing quickly.  Then last night hit!  First she was so uncomfortable that she didn’t lay down until 1:30 am.  Honestly Juan and I passed out so we are not even sure what time she finally fells asleep.  However, at 4:30 she woke us up screaming.  After more Motrin and some snuggles, we finally got her back down around 5:30.  She woke up again around 11 and has been miserable since.  She is refusing to eat or drink because swallowing hurts so much.  Its so hard seeing her in so much pain and not being able to help.  We are praying this drop passes.  We were prepared (kinda) that the 4th or 5th day after surgery is always the worse.

IMG_1380So right now Peanut has been our focus.

Then the craziest thing happened yesterday!  Peanut went viral!  Like legit…over 1 million views!  How did this happen?  I’m not really sure.  We have her videos going through a company called Newsflare.  Because there have been so much bullying online against the DS community, Newsflare monitors when the videos have been downloaded and notify us.  So two UK media sites posted her walking video on their site and it went crazy.  As soon as I saw it and saw so many comments my heart stopped.  In the past I’ve read horrible hateful things on some of Peanut’s buddies images and videos.  I was expecting the worse.  There were a handful that I read that filled me with anger.  How people are so mean is beyond me.  But was surprised me was how many people stuck up for Peanut and attacked those mean people right back.  Now, I can’t condone words that were said, but it touched my heart that strangers stuck up for our baby girl.  She received so much love and support from so many people.  I’ve always known Peanut is destined to change the world!  She has already changed it for those who love her.  I am honored to be her mama and watch the world fall in love with her to!  Who knows, maybe one day you’ll be watching her on TV or seeing her beautiful face in a magazine ad 🙂

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Bye Bye Walker!

IMG_0936Yesterday Peanut said good-bye to the walker our Physical Therapist gave her about a year ago.  We walked into therapy with it, walked out without it!  No…this doesn’t mean she is walking on her own now!  But we transitioned to another “walker”  Even though she walked like a pro in her walker, our goal with Peanut has always been to move her into something that is more of a toy (baby stroller, cart, wagon) instead of the medical walker.  This will give her more independence as well as not draw huge arrows to her to show everyone that shes “different.”

Last week, while hanging out at our friends house, we had Peanut try out her daughters shopping cart.  I was worried it was going to be too tall or even tip a little and then she would be scared to try it again.  But nope!  It was perfect!!  She voluntarily pulled herself up on it and took a few steps.  Instantly we knew we needed one of our own!!

So we purchased the Melissa and Doug Shopping Cart  It is a little more pricey than we would normally pay for a toy.  However, it is super sturdy, wont tip and realistically because of her size, Peanut can use this for years!

I took it with us to Physical Therapy to show Betty and she loved it!!  She is even planning on purchasing one for her to use there.  Since this has been the only thing Peanut has ever walked with on her own, it is worth transitioning her to it full time.  So now my job kicks in!  We are helping her use the cart as much as possible.  Planning on taking it with us wherever we can and encouraging her to be more independent with it.

I was so proud that she has made this progress!!  I feel like we have been pushing her for this for forever!  This past month she has really found her strength.  There’s no way to determine how long she will still need assistance to walk, but she is heading in the right direction.  Part of me is terrified of her fully independent and running around everywhere!  She’s hard to keep controlled as it is 🙂

So be on the look out for us at the store if your a local.  You might just catch Peanut shopping on her own 🙂

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Don’t Judge

summerspecial6Recently Peanut had a cancer scare.  We didn’t share this info with very many people, because we were praying it wasn’t a very big deal.  After attending the Down Syndrome clinic this past May, one of the specialist wanted to run blood work.  Remember I mentioned they tested her for Celiac Disease?  Well that came back clear and normal, however at the time her thyroid hormone levels were very low.  This could mean something simple as hypothyroidism, where medication is helpful.  To something more extreme as thyroid cancer.  Our doctor wanted to run testing again to make sure that Jana just wasn’t fighting an infection at the time.

We waited two weeks to re-take the test, and then another week to get the results back.  To tell you our stress level was through the roof is an understatement.  We were so terrified of the possibility of cancer.  I broke down completely instantly when I pictured my beautiful girl going through treatment, loosing her hair, having to fight non stop.  I’ve witness other families go through the same thing.  My heart as always broke for them.  Suddenly we were facing our biggest fear.  Thank the Lord, all the test came back clear!  They are going to be testing her again in 6 months to insure, but as of right now she is healthy!

So what is the point of sharing this?  During this very stressful time, I gained some clarity.  Already we have had people look at our lives and somehow pity us.  They see the stress, the doctors appointments, the sleepless lights and think we somehow regret bringing Jana home.  During this cancer scare I thought “Would you go back and change it?”  My answer was no.  I feel like God brought Jana to us.  He had a plan and purpose for her being in our lives.  And even if my time with her is cut short, even if the worst happens, having her is still worth it!  We would never even consider going back and telling our social worker no.  Jana has brought so much joy and happiness into our lives and honestly, we wouldn’t change anything about who she is or the experiences we’ve had.  summerspeical4

Life can change in an instant.  None of us are guaranteed another day.  I know as Jana gets older even more scary events will come our way.  This coming August we have to hand her over to a surgeon for her tonsillectomy/adnoid removal.  My point is, don’t judge a family by the struggles they are facing.  See past the pain and see the determination, the love and the faith that is getting them through it.

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Down Syndrome Center

First of all, I was planning on posting this on Wednesday, but we just moved and my laptop was placed in a random box.  Thought it was lost forever, we finally found it last night!  Anyways…

This past Tuesday Jana had another trip to the Down Syndrome Center.  This is the awesome center she has visited twice before.  We are there for about 4 hours, but we see 6 different specialist.  Its one of our favorite visits because we get so much accomplished!  We started with seeing the Occupational and Physical therapist.  First of all, they were very happy with Jana’s progress.  They feel she is making great improvements and they gave us some tips and exercises to help move the walking progress along.  Also, they submitted a referral for Jana to receive Occupational Therapy there in San Diego.  It means that we will have to take the 2 hour trip every two weeks or so for her to receive the service, but it is not offered in our area and  I know it will benefit her.

The dentist was happy with her teeth and found out she has 10 teeth now!  We haven’t been able to count good because she bits us each time we are close lol.  They want us to schedule an appointment at the dental clinic at the hospital.  Nothing to worry about, just starting her on a healthy check up plan.

We were able to see the Speech therapist.  She was happy with Jana’s progress but knew there was more that could be done.  Our local regional center doesn’t feel a speech evaluation should be done before the age of 3.  The specialist at Rady’s did not agree!  So a referral was put in for her to be fully evaluated as well as be put into a special play group/speech program.  Yup that means another 2 hour trip at least twice a month for this service.  I’m hoping somehow magically they can be on the same day, but even if they aren’t she is worth it!     IMG_0078

Next on to Nutrition!  For the past year I’ve been bringing up the point that she hasn’t gained much weight.  She has been pretty consistently around the 18.6-19.2 lbs range.  Obviously that doesn’t seem right.  Finally someone agreed with me!  The nutritionist was worried that maybe her body is not digesting her food properly therefore she is loosing nutrition.  This would explain the throwing up often as well as the horribly stinky diapers (seriously!)  So she want’s Jana to see a GI Specialist to see what they suggest.  From there possible testing will be done such as x-ray or even a biopsy of her lower intestines.  She also gave us some pointers on some Lactose free products to try to help raise her calcium intake.

Finally we ended our trip with the Pediatric Specialist.  This was a new young doctor who recently took over the Pediatric Down Syndrome Department.  She was amazing and Jana just loved her!  We received a referral for her to possibly start taking Jana to a pediatrician in San Diego.  That way they will have access to all her hospital visits and updates.  And truthfully, she would receive overall better care.  (Yup, means possibly more 2 hour trips!)  She agreed with the nutritionist and felt Jana would benefit from seeing a GI specialist.  She also wanted to run blood work to check her normal hemoglobin count as well as rule out possible Celiac disease.  This would be a gluten allergy and could explain the low body weight.  So after we finished with the clinic we IMG_0083went right over to have her blood work done.  I have to say, my girl is MUCH stronger than me.  I am such a chicken with needles, yes even after 3 births, a spinal tap and a tattoo, needles freak me out!  But my girl took it like a champ.  She watch everything the nurse was doing and even held her arm still.  While sitting in Daddy’s lap (I wasn’t about to force her to do that!) she didn’t even whimper!  The nurse was impressed 🙂

So the next day the Pediatrician called us to inform us that Jana is clear of Celiac disease!  They are having us run more blood work when we go up this coming Wednesday for her ENT apt.  This is to hopefully rule our more things. 

So I’d say this was a very successful trip to the Down Syndrome Clinic.  It was a long day but truthful we got so much taken care of it was all worth it.  It is easy to complain about the possible trips we will be adding to San Diego.  The cost of gas, the time to travel, the re-arranging our schedule.  It’s very easy to see that all as a negative.  But I know there are a lot of mamas who wish they had the option to take those trips.  They have missing parts in their hearts from the little ones who were taken too soon.  This past year our DS community has lost a handful of beautiful babies and I need to remember to be grateful for all the annoying appointments, the long car rides, the countless phone calls and arguments to get her services.  All of it is because Jana is here!  She is mine and she is worth all of it!  None of us are guaranteed another day and I need to remember plenty of mamas would take my place if they could.  This past week especially I have tried to truly cherish my time with Jana.  With all our babies actually!  Life is so precious and things we least expect can come our way.  So, do me a favor, if you reading this and you have children at home, stop and make sure you hug them a little longer than normal.  Kiss their sweet faces and make sure you savor their smell.  Cherish every moment you have.  We are all so blessed to have the chance to continue to do these simple acts.

 

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A moment to never forget

2-24-1Ok…I’ve mentioned it before, but truthfully, before Peanut, I was always very uncomfortable around special needs people. Well…sometimes even scared. Today Peanut had therapy at our local Center for Exceptional Children. She was walking down the hall and blocking everyone’s path. This young man was trying to pass by. He was about 18 or 19 and he was special needs. I couldn’t tell you what his disability was, but I can tell you he had a massive smile watching Peanut go. We moved her to the side and his mom went past first. He stopped and held out his hand for me to shake. I smiled and shook his hand, he then raised my hand and kissed the back of it. No words, nothing else. Just another smile and he walked away. Now let me ask you, why in the world was I ever uncomfortable around people like that?!  Yes, special needs individuals are different. But they are different the most amazing ways!!  So full of love, compassion and strength.  Worth so much more respect than the world gives them.

This young man probably won’t remember me.  He probably didn’t even think what he did was a big deal. But I promise I will hold on to that moment.  He made an impact on my life quicker than most people I even have conversations with.  If I didn’t just stop and look at him, and not his disability, I would have missed this opportunity. 63def18c4d59a139e6804055810bff8e

Next time your out, if you do run into a special needs individual, just say hi!  Don’t ignore them or shy away because you are unsure of what to do.  Open your heart to the possibility of something amazing!  I know you wont regret it!!

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On the Move

2-10-2Last time I gave a therapy update, Jana was still struggling to stand on her own and just started taking a few steps.  What a difference a few months makes!!  Jana officially can stand on her own and pull up on just about everything.  She officially started climbing up steps and making my days even more interesting.  She can walk pretty decent amount with just holding my hands or using her walker given to her by her physical therapist.  This girl is on the move and nothing is getting in her way!!  It is so amazing to see her working so hard to reach her goals.  In the past week alone, I’ve seen a huge change in her confidence and strength.  She is constantly freaking us out by climbing on furniture and getting herself in tight spots.

I found this online:

The average age to begin walking in a child with down syndrome is 25 months (with a range of 14-42 months), versus a child without down syndrome, where the average age is 13 months with a normal range of 9-17 months.

2-8-1So Jana is actually above the curve from her DS buddies in walking, and just a little behind her typical friends.  I am so so proud of her!!  At times it is still tough.  To watch her try so hard but still not be able to do it.  I can see her little brain telling her tiny body what to do, but it still not working.  There are times she gets very frustrated and just tries to give up.  But she is stubborn and independent, so not much stops her from reaching her goals.  (Even as I type this she is trying to figure out how to climb onto the couch so she can take my computer away 🙂 )

I don’t see her having to use the walker for long.  But if she does, that will be perfectly fine.  She is proud of the steps she can take unassisted and it helps bring more independence in her life.  I know when people see it with her, it confuses them.  I mean really, the walker screams SPECIAL NEEDS CHILD!!  But you know what, when I see her beautiful face light up when she can move on her own, I don’t care what anyone thinks!  My girl is perfect just the way she is!  And if people are uncomfortable with that, then thats just too bad 😉