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Product Review – TwistShake

Hi friends!  It’s a new day and we have already taken steps to get services to help Peanut with this new diagnosis.  We are being proactive about it and hope to starting new techniques to add to her therapy. Today is a good day 🙂

It’s been a while since I posted a Product Review.  There are definitely some amazing tools we’ve been using with Peanut and I hope to review them soon.  But today I wanted to start with a non-special needs geared item.  19-5979cf5a4ed2e

Let me introduce you to TwistShake  It is a company from Sweden that just recently starting distributing here in the US.  They produce bottles, sippy cups, kid cups and pacifiers that are all BPA-Free.  They are not only safe and effective, they are adorable as well!!  So much so I am hoping they develop an adult cup because I love it so much!!

Peanut was given a sippy cup to try out.  I was so excited about this because we have struggled getting Peanut to use a cup.  She has mastered straws but has had a lot of difficulties with cups.  She struggles lifting them correctly as well as closing her mouth enough to get anything out of them.  It is something we continue to work on.     IMG_1912

I was thrilled that she was actually excited to try the TwistShake.  I filled it with frozen mixed fruit because it is still pretty hot outside.  I gave it a good shake and helped her get a good first drink.  She loved the taste of the sweet water because I really don’t allow her any juice.  She kept handing the cup back to me so I could help her drink it more.  She has started making progress on holding it correctly and doing better about closing her mouth around the spout.

What makes these cups so special?  It has a Fruit Mixer that allows you to infuse your water with berries or fruit safely without worries of seeds or chunks.    From their website:

Fruit Mixer – mix your favorite fruits or berries and water, shake, and wonder at the fantastic flavors that have infused your drink. Healthy and delicious!

Also for letting us try it out, they gave me a Coupon Code to share with you!!  If you love the bright neon colors (like the one Peanut has) use code RAISINGPEANUT40 to save 40% off.  They also just restocked these adorable pastel colors!!  We already ordered the Mint Green and can’t wait to receive it!!  Use code RAISINGPEANUT20 to save 20% on any item pastel collection.  Also, free shipping on any orders over $25!  SCORE!!  Remember, these are not just for sippy cups, these codes work on bottles, kids cup and pacifiers.  Peanut has put her stamp of approval on TwistShake!  So go order yours!!

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Our new Journey

Peanut had her Autism evaluation today.IMG_1995

Let me first start by saying, currently I am feeling numb and crushed.  This has been a very emotional day for us…I think maybe me more so.  The test was conclusive that Jana’s current assessment scores are reflective of her having moderate to severe Autism (In CA they are not able to legally diagnose until the age of 3.)  So what does a dual diagnosis mean?  It means even more changes.  She will now need to add ABA (Applied Behavior Analysis) to her therapy schedule.  She has a chance of being non-verbal and/or limited communication.  It can further delay or impair her mobility and walking, her fine and gross motor skills and her overall development.  With this dual diagnosis, the chance of her attending a mainstream school is now in question.  She will most likely never be able to live on her own, she will probably never create a deep relationship with someone to marry, and I have no idea what her developmental goals will be now.

IMG_2002Listening to the doctor list off where Jana fits developmentally in different areas felt like she was stabbing me in the heart.  To hear my precious 27 months old has an overall age development of a 5-10-month-old was devastating!  I knew she was delayed…obviously, but not that much!  It took every bit of energy I had to hold it together while she listed off Peanuts delays.  With each new test result, I saw more and more dreams I had for her vanishing away.

I am part of a FB Down Syndrome/Autism support group.  I went to them almost immediately for help.  I felt broken and alone.  The amazing family I’ve found in our Down Syndrome community suddenly felt so disconnected to us.  She will no longer be experiencing what most of those kiddos experience.  As they continue to develop and grow…she will stay the same.  She has never “fit” with typical kids, now I feel she doesn’t fit with kids with DS either.  A mother responded to me and it touched exactly what I was feeling…

I think we all feel that way when getting that second diagnosis. It is like getting the wind knocked out of you, again. Just like when I heard that my son had Down Syndrome although the second diagnosis it was a shorter time to get through the feelings of “loss”! I tell people when you hear your child has Down Syndrome, you go through a time of mourning the loss of a typical child. When you get the Autism diagnosis I mourned the loss of a typical child with Down Syndrome. It’s like before your child is born you dream about who they will become and what they will do and then, bam, Down Syndrome. Then you think, look at all of these young adults with Down Syndrome doing amazing things, then BAM, that second diagnosis! Now what do you dream? One day at a time, sister. Create my own dreams each day. My son is 15 and even though he’s non verbal, he touches everyone’s heart that has the opportunity to know him and changes people’s lives for good. I know that sounds strange, but people tell me that all the time. Keep up the good work.

Right now I feel stuck.  Right now, I no longer know how to IMG_2014dream for Peanut.  I feel like we are starting from day one again.  New obstacles she will face, new setbacks, new fears we must now conquer.  Just thinking about how much harder life will be for my sweet girl now brings me to tears.  She had to work hard with “just a DS” diagnosis.  Now she has to work even twice as hard…to still be drastically behind her typical and DS friends.  This really sucks!  There is no other way to put it.  I don’t want this diagnosis.  I do not want to fight with our Regional Center to add ABA.  I don’t want to add yet another specialist we need to see on our already busy calendar.  But we will do it!  I told myself I am allowing this weekend to be sad and have a small pity party…but when Monday comes along, it’s back to business.  I will do everything imaginable to help my daughter be the very best she can be.  If that means she will only reach a 3, 5, or 10-year old developmental stage, then I will always cherish my forever baby.  I will support her, love her and cheer her on along the way as she makes her own dreams.  She will still be a world changer…you can bet on that!

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Dual Diagnosis

(Written 9/14 11:30 pm…posting 9/15)

Late night post…IMG_1967

Honesty time! Tonight I am scared. Tonight I am close to tears as I fill out paperwork for Peanut’s appointment tomorrow. I’m terrified of the results we might receive, and what they will mean for Peanut’s future. A mama told me today in a FB group, “No matter what the results are, Peanut is the same beautiful baby she was yesterday!” Even typing that brought me to tears. Why is this appointment so difficult?

Peanut is being evaluated for Autism.

Duel diagnosis is still somewhat new within the Down Syndrome community. Up until 10 years ago, it was unheard of. Even now a lot of doctors do not feel that a child with DS can be diagnosed with Autism as well. New research is developing and helping families get the support and answers they have needed. Roughly 5-7% of children with DS are diagnosed with Autism and that number is not fully accurate because of incomplete documentation. Because of symptoms overlapping it’s very difficult for a specialist to diagnose correctly. Often Autism gets overlooked because a lot of symptoms can be tied back to DS.

IMG_1973So why is she being evaluated? Well, it is something we considered around a year ago. We’ve noticed small traits (hand flapping, OCD, food issues, meltdowns, lack of vocabulary) and we kind of blew it off. I think we were scared it might be true. However, when we switched pediatricians this past summer, he suggested the evaluation. Her doctor also specializes in Developmental Disorders at Rady Children’s. We had seen him a few times during our Down Syndrome Clinics and just loved how he treated Jana. When we arrived at his office the first time, he had us complete a survey that I didn’t have a clue what it was for. After we were done, it flagged him to have Jana tested. He reassured us that there was still a high possibility that her symptoms are simply from DS and to not worry. Easier said than done.

Now let me explain. I am not against having a child with an Autism diagnosis. I’ve known some pretty amazing kids who are on the spectrum, so it’s not that I will be ashamed at all! My struggle is Peanut. She already works SO hard at everything. She is already in multiple therapies to help her develop. She already has odds against her. Does she really need more?!? Having a dual diagnosis will change everything! From adding new therapies, changing how her current therapies are structured, even schooling when that comes around. Especially in our area! Where services for DS and Autism are abysmal. I don’t want my baby girl to have one more thing she has to fight. Life is tough on her as it is. Adding this would just make it tougher. She deserves a break!IMG_1975

I don’t even know what to hope for tomorrow. Of course, I’d love for them to say she isn’t on the spectrum. But at the same time, I know it will answer a lot of questions we’ve had about her development. I just want to make sure we get a chance to do the best things for Peanut. To give her all the tools she needs to be the best possible girl she can be. I know this won’t change who she is. Jana is amazing! I am honestly blown away by her. This won’t faze her one bit! My girl is a fighter…I just have to learn from her strength and keep up the fight!

More info on Duel Diagnosis: NDSS

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Mama Guilt

IMG_1794Lets talk about Mama Guilt.  You all know what I’m talking about.  Are you spending enough time with your kids?  Do you cook enough?  Are you involved enough?  Are you working too much?  Are they too independent?  Are they not independent enough?  And so on….

Now lets add in a special needs mom… Are they developing correctly?  Do they need more services?  Are you pushing too much?  Are you not pushing enough?  Do they need another specialist?  Do they have too many specialist?  Are they close to reaching milestones?  Are you holding them back?  Will they be able to attend school?  Do you want them in mainstream class?  Are they healthy?  Are you educating yourself enough?  Are you talking to them enough?  And so on…and so on…

Welcome to the life of a special needs parent.  It is full of worry and stress that you are not doing enough…or doing too much.  It’s trying to find a balance of letting your child be a child…and pushing them to do all their therapeutic needs.  Its a constant fear that you are the reason they are behind and fear that they will never catch up.  Honestly, its an odd feeling of having it all together and falling apart at the same time.

Today I got hit with mama guilt….bad!  We traveled up to Radys (2 hour drive) to have Peanut evaluated for Occupational Therapy services.  It is not offered at all in our area so that means we have to get it elsewhere.  She started the evaluation asking about her eating habits.  Some of her issues have come from the GI appointment we had so she wanted to address those.  So she had Peanut eat (snacks at therapy?! Peanut was in love!IMG_1796 Instantly she told us that Peanut doesn’t chew her food properly.  She chews with only her front teeth and is unable to manipulate the food to chew with her molars.  We’ve noticed she chews in front…but had no clue it was a problem.  She said because of this, she is having a harder time eating different foods (Meat for example) since she needs her molars to break it up.  Also, when we explained how she seems to gag when she drinks water (almost like shes drowning) she instantly came to the conclusion that is was also because of her low muscle tone in her mouth.  She said the water is difficult to swallow so she cant manipulate the water correctly to swallow the way she should.  Which explains why she often throws it up as well.  LIGHT-BULB!  Seriously, it all just made sense.  All the worries we’ve had and struggles getting her to eat, this lady provided us with answers in less than 15 minutes!  She helped us come up with techniques to do with her and recommended other foods to try.

Instantly my mama guilt kicked in.  I even asked her if she was worse off then we imagined.  We had no clue her eating habits were a problem and causing the other issues.  I felt horrible that I didn’t fight more to get her into OT sooner.  That I didn’t do enough.  That I failed her!  Are these logical fears?  No not really.  We’ve been asking almost every doctor we see why she gags when she drinks.  We’ve told them about her eating sensitivity.  I’ve fought with our local agency to get approved for OT.  It took 5 months of being on the phone constantly fighting to get her appointment.  I understand I did these things…but the guilt doesn’t.  When it comes to Peanut’s therapy and progress, I take the reign.  Juan is involved all along, but I’ve made it all my responsibility.  That also means, I feel like if Peanut is delayed more than she is expected to be, its my fault as well.  Almost in tears I sat and listened to more therapy techniques we need to start her on at home.

When we got in the car the first thing Juan told me was this isn’t my fault.  He knew exactly what I was feeling.  He saw the look in my eyes and tried to reassure me that Peanut is doing good.  He wanted to take some of the weight off my shoulders so I understand that we do everything we can for her.IMG_1797

I honestly think its because I am so terrified I will fail her.  The big kids just learned things naturally.  I didn’t have to walk them through simple things step by step.  Jana has to be taught almost every new milestone.  I’m so scared that if I don’t do things correctly, she will be even more behind than she should be.  I know this isn’t just my fear.  I’ve spoken to a couple of other special needs mamas.  We’re not sure if this fear ever goes away!

Maybe that’s the price that comes with being a special needs parent.  Maybe that worry and guilt makes us appreciate every tiny victory.  It’s what helps us keep fighting when it seems hopeless.  To attend every therapy session, every doctor’s appointment, every meeting to get your child where he/she needs to be.  The guilt drives us to do more when we feel like giving up.  The guilt makes us be better parents.  I would take all the guilt and more if it meant I get to see Peanut live a long happy life.  She is my motivation to be better.

Btw…she will be starting OT 2 times a month.  We just have to wait about 3 weeks for the evaluation to be processed then put on a wait list for therapy to start!capture1.png

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Daddy Post – Value in Life

Written by Juan – Peanut’s DaddyIMG_1303

Lately their has been a lot of talk about Iceland due to a recent report by CBS. The CBS article addressed how Iceland is trying to eradicate Down Syndrome completely. Iceland’s stance is that all women should be made aware of the possibility of their child being born with Down Syndrome via screening. Since the screening was introduced in 2000 nearly 100 percent of women who receive a positive diagnosis have chosen to terminate their pregnancy.

IMG_1337Although we are talking about Down Syndrome, the underlying question we must address is the value of life.

I remember shortly after my wife and I adopted our daughter I was asked by a Dr. “If her mother knew that she had down syndrome, why not just terminate the pregnancy instead of putting her up for adoption?” I can honestly say that I had to walk away because I was afraid of how I would respond.  This question also made me stop and think. We brought Jana into our home at 1 month old, tiny (since the name Peanut), cute as can be and full of life. Jana’s first year of life was very eventful. She required medical treatment outside of our county (2 hours away) and initially we had appointments several times per week. Jana had appointments at the Down Syndrome Clinic along with several follow up appointments with ENT, Cardiology, Pulmonology, Pediatric Specialist, Blood Screenings, and a few hospitalizations due to respiratory and low Oxygen concerns. In order to attend all of her appointments (which I insisted) I had to file for FMLA coverage.  I very quickly used up my 160 hours of vacation time I had accumulated and we accumulated over $4,000 in debt due to travel, hotel stays, specialized testing (still waiting reimbursement). I don’t say this for attention, but for understanding. Although my wife and I focused on her well being, others were not able to see past the hardship. At times we would only sleep 2 to 4 hours per night due to her sleep apnea, taking shifts as needed and pulling all nighters on weekends. We were afraid to talk to friends and family at times because we were afraid that people would judge Jana, or feel like we did the wrong thing by taking her in. We spent as much time with our other biological children (Joey, Mason, Jaylen) keeping them informed of her status, pending tests and upcoming medical procedures in order to address their concerns for their sister and our family.IMG_0904

I’m not going to lie, it was hard. Being away from our other kids at times for days, nights, weeks, lack of sleep, minimal time with my wife, financial stress and being helpless to help our daughter at times. Through all of this, not once was the value of Jana’s life questioned. Their were no regrets about her adoption. From the moment that she was placed in my arms by the social worker we bonded and a life long connection was formed.  What I came to realize though was that others were not able to see past her diagnosis, past her appointments, past the zombie like appearance we sometimes reflected due to lack of sleep. They looked at us with pity and at times questioned our decision.

At that time Jen and I made a decision, to share our experience with others. Jana’s blog was created and we began to post as many pictures of her as possible. Initially we were unable to post anything due to her “foster” status but we walked the line as much as possible. We wanted to introduce our friends, family and the world to the Jana that we instantly fell in love with. We wanted to help others to see past her diagnosis, and fall in love with the same “Peanut” that we fell in love with instantly.  We wanted them to see her smile which brightened our day, hear her laugh which instantly made us smile, see her progress (even if minimal) and share in our pride for her hard work and accomplishments. We posted as many pictures and videos as possible in order to introduce the world to “Peanut”.

IMG_0728In fact, just this past week Peanut found fame, with some of her video’s being posted by several sights and views quickly climbing above 1 million, 2 million and now somewhere above 5 million. With those views came many comments of support and encouragement and of course discouragement and questions of the value of her life. If you know us personally you know how protective I was (AM) of my peanut. My initial desire was to respond out of emotion but as I read the comments I was saddened. Not because of what was being said but because of how much these people were missing out on. You see, they did not know my Peanut. They questioned her progress, “She’s taking a few steps using a walker, big deal” not knowing that these simple steps were a result of months of hard work and support from others who love our JANA as well (PT, in home therapy etc). I felt bad for those that were so shallow that they were unable to see past her diagnosis, were unable to see her beauty and share in her love. And then something happened. Some of our online friends began to reply “Hey, that’s Peanut”, “That’s Peanut and she’s made so much progress”, “That’s peanut and you need to read her story on her blog”. Others began to step up and defend my daughter, because they had also invested their time in her and had fallen in Love with who she is.

In her short life (2 years) peanut has changed our life for the better. She has brought our family closer. She has taught us about overcoming adversity, working hard to achieve small steps (literally). She exposed us to an amazing community of support online, provided us with the opportunity to meet some amazing families and loving children. We have shared our story with others, prayed for families we have never met and cried for families we may never meet. All this was possible for one reason. Jana’s biological mother saw past her diagnosis and found Value in her life. Although she was aware that she would be unable to address her medical needs she made the selfless decision to place her daughter up for adoption and not terminate her pregnancy.IMG_7539 (1)

Choosing life not only changed our life for the better it has also allowed Jana to impact the life of others worldwide through her smile and her laugh. In her short time here she has helped us gain a better understanding of the value of life. What Iceland is failing to recognize is that that they are not just eradicating Down Syndrome in their country. They are killing a beautiful life who may happen to be born with Down Syndrome. You cannot debate the potential of that life when you never give him/her the opportunity to live. In her short life Jana has taught us so much more about “abilities” despite being labeled with a “disability”.

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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 🙂