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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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A Nervous Mama

IMG_1265So the day is almost here.  Surgery day!  Peanut will check into the hospital at 6 am on Thursday morning to have her tonsils and adenoids removed.  I know, this is a simple procedure and its not a big deal.  Let me tell you, to a mama of a 2 year old…this is a big deal!!!  We have to hand our baby girl over to strangers and pray that they will return her to us safely.

I just finished reading this article… Anesthesia & Down Syndrome  and now my anxiety is even higher!!  My husbands response was “Stop reading these articles, pray and trust that God will take care of her!”  I know that God loves Peanut even more than I do.  I understand that He has a plan for her far bigger

than I can ever image.  I just need to stop focusing on

myself right now…and remember my job is to rely on Him.

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Please keep us in your thoughts and prayers this Thursday.  We for sure have to stay one night however the Doctor did tell us there is a possibility of a 2-3 night stay.  I will try to keep you posted.

 

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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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Guest Mama – Looking Back

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I’d like to introduce you to Karen today.  Karen is a beautiful mama to a very handsome boy named Caleb.  I’ve been able to follow Caleb’s journey as he competes in the Special Olympics, travels to be part of DSA Programs, and overall as he just lives his life as a pre-teen boy 🙂  I love that I’ve been able to connect with Karen because she has been able to advise me when it comes to these rough toddler years Jana is going through.  Part of our DS community is learning from others and passing that knowledge down.  So I’m happy to give you the chance to meet Caleb 🙂

Looking back, and looking ahead….

caleb6Raising Caleb has been quite a journey so far. We were/are “older” parents to begin with, so…that. And he’s got a ton of energy, so….that! We didn’t exactly plan to have Caleb, 17 years after his sister, but I honestly believe he was sent to us for a reason. Those first days and weeks were filled with lots of emotion – joy, sadness, confusion, anger, concern, but most of all, love. We loved him from the first, but realized that raising him would be more difficult than raising a typical child. I say that not because we loved him any less. But because we know the world still has a long way to go to be an inclusive environment for our kids with disabilities –whatever they might be.

Those first days of his life would also be filled with doctor’s appointments, and therapy visits. We settled into our routine, and wondered if this would be our new normal forever (It isn’t). Later on, Caleb headed off to preschool, and mom-playgroups turned caleb4into playdates with friends. He happened to be one of two children with Down syndrome at our church preschool. Both of them were included in everything. We worked hard on developing communication skills to make that easier. Big-kid school came, and therapies were done in during the day, which made it a bit easier for mom.

Fast-forward to today. Some days, I have a hard time believing our little guy is already ten. 10 is a funny age. Halfway between toddlerhood and adulthood. Caleb’s on the cusp of puberty, and I have my fingers crossed that going through that with a boy will be a little easier than it was the first time J Jana asked me to share what our typical day looks like. It brought me back to a time when Caleb was little; being fascinated with the one lone mom who stayed in our BabyCenter Down Syndrome group. Her son was older, maybe even ten years old. What was their life like? Was it really #morealikethandifferent ?

caleb1For us, the answer is yes, and no. We still struggle with communication most days, and fine-motor skills. (Fingers crossed to work on shoe-tying and other independent skills over the summer). We work more on planning for his financial future than we did our daughter, making sure he had a Special Needs Trust, and now, an ABLE account. We have a binder with his medical life – specialists and insurance information – for easy access. We think about his future, and what that might look like – employment, government assistance, living situation, love life! We help him to understand the importance of good social skills as he gets older. We pray that he doesn’t have many encounters with bullies or overhear disparaging remarks.

caleb8However! Caleb leads a full and active life, filled with friends, sports, school, and community events (see my IG to see all he does!). We are thankful that even though he has a few health concerns (open VSD and hypothyroidism), overall, he’s a healthy kid who loves to do things and meet people. He loves to travel, and we’ve been some pretty cool places. He loves his family, most especially his niece Evelyn. He loves to help around the house, but could care less about showering (!). He likes movies and TV shows and books; trains and cars and nerf guns. We like to do things as a family, no matter how seemingly mundane. He loves his daddy – loves to do things with him.

If I had to pick just one word to caleb3describe Caleb, I think I would choose “Excited!” because he is! He’s shown us how to live life to the fullest, and what it means to enjoy every moment we can. He shows us what unconditional love looks like, and what true friendship is. 10 years into our journey…we’ve learned a lot. But there is still so much to learn from this little guy. So, my advice to you, looking back, is to learn all you can from your child with Down syndrome. Give them the tools they need to fly. Because the world IS changing. There are so many opportunities for our kids today. The world still has a long way to go to be totally inclusive, but I think we are heading in the right direction. Be ready for poss-ABILITIES!caleb2

Peace,

Karen

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It’s been awhile

IMG_0001I know…I’ve totally failed at keeping this blog up and active.  Like I’ve mentioned before, I try to write when it comes natural.  However, sometimes that happens when I am completely busy, or it just doesn’t happen.  But I did have some time today and had a few things on my mind.

First of all, for those of you who don’t follow our Instagram (I try to post daily updates of Peanut there) Peanut is still not walking on her own 😦  She is doing great at using her walker or even holding someones hands to walk, but the desire to do it alone just isn’t there.  We are currently still seeing Betty, our physical therapist, only twice a month.  This is all because physically, there is no reason for Peanut to not walk.  She doesn’t have the determination to do it yet.  So that means, a lot of pushing at home is what needs to happen.  We try to make her walk as much as possible and it seems to sometimes be working.  She can now at least push her walker on her own and actually gets mad at us for helping her 🙂

IMG_0011We have a few important doctor’s visits up ahead.  This coming Tuesday she will go to the Down Syndrome clinic.  This is where  she’ll see 7 different specialist in about 4 hours.  Its a super busy and long morning, but we get so much out of it!  A few concerns we have right now: the fact that she still is not getting any OT therapy and that she has recently started throwing up quite often.  Sometimes its when she drinks a lot of water, others its just random.  We’re not sure if its an allergy or a digestive issue.  So that is one big thing we plan on bringing up.  Later this month she also sees her ENT again.  This should be the apt that we schedule her tonsillectomy and adenoid removal surgeries.  Praying this surgery helps her sleep better!!

Ok, so here is something that has really affected us as a couple since Jana has entered our lives.  We now have 4 kids, so I know getting baby sitters in general are difficult for that.  However, I know that isn’t the only issue.  We’ve had people (usually grandparents) watch them for short periods, and I have had a total of 4 nights away from her. (three was because we had out of town youth trips)  Why is this?  Because no one wants to watch her overnight!  Yes, she has sleeping issues, and she has a routine that helps to stick to as close as possible.  But these things are not because she is a difficult child, they are because of the Down Syndrome.  So far my MIL is the only one who has stayed overnight.  The problem is, she will only watch them here in our home to make it easier on Jana.  Which I totally get and appreciate, but that means in order for Juan and I to have any nights alone, we have to get a hotel.  Well, now on a youth pastors salary, that doesn’t seem very responsible most times.  So we stay home.  We make a point to try to connect with small coffee dates, but sometimes that just isn’t enough.  It’s definitely put a strain on our marriage.  Let me take a moment, I am in NO way complaining that our friends and family don’t help.  Often times they offer and we turn them down.  Because honestly, sometimes its just easier to keep her routine then change things up.  I’m also not blaming Peanut for any of this.  This baby sitting thing is just something I’ve felt has been very different than with the other kids.  I think sometimes Juan and I are overprotective of her (Juan more so than me lol) and maybe that makes others nervous about watching her.  It’s just hard because I don’t see her as any different than the big kids, but in reality, she is!  Down Syndrome has affected everything about her, good and bad.  So no matter what, she will always be treated slightly different than other kids.  No matter how much we don’t want that to happen, it just will.  Have any of you other DS mama’s struggled with getting sitters??

IMG_9961I don’t know, it kinda just seems like I’m rambling here a bit, and if I am, I’m sorry!  Sometimes it still feels like we are alone in all of this, I desperately wish the support group in our area was active!

BTW…Peanut’s 2nd birthday is this coming Monday the 22nd!!  We are so excited, but unfortunately celebrating is put on hold a little.  We are currently in the process of moving…again!  We are hoping to take a family trip soon to celebrate not only her day, but big sister Jaylen’s 11th bday that was on the 12th.  May is a crazy month for us!!

 

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Uncomfortable…Part 2

Ok…so first I have to apologize.  When I wrote the blog earlier today I was angry and upset.  It hurt me to see people treating my beautiful girl differently.  After having a long discussion with the big kids and my hubby…I understand the situation more.  I don’t think the library was just full of mean moms today.  I do think Jana made them slightly uncomfortable, but not in the way I took it.  If I look back to before we got Jana, I’m sure there were numerous times I made a mama of a special needs child feel the same as I did today.  Most people are unsure on how to even start up a conversation with a SN mama.  Do they bring up the disability?  Do they try to ignore it?  Ask questions?  Don’t ask questions?  There is always a fear of offending someone.  That’s whats pretty amazing about kids…they will come right out and ask, and then fully accept the answer.  Why do we loose that child like innocence?  I’d love for a mama to ask me questions about DS!  I’d be happy to share all I know and explain what a blessing Peanut has been to us.

Today wasn’t a learning experience for Peanut…it was for me!  I have to gain a tougher skin.  I need to be prepared for Jana to sometimes be the outcast.  I have to be there to smile and brighten her world, when things seem to tear her down.  I need to remember that no everyone is comfortable with difference.

To end your night, I wanted to share this video that was shared on IG.  Its kinda funny…but so true!!