#SaveMedicaid #NoCutsNoCaps

I worry about our countries healthcare. Those that need it, aren't getting it. We pay for our own because our works are so small. 

I worry about people like my nephew Emerson that may loose Medicaid. They have helped him with hearing aids, a walker, a wheelchair, therapies and more. 

Trisomy 18 is considered Incompatable With Life in hospitals. My sister did nothing to help him in the beginning. Once he hit 2 months, and was still growing she chose to fight for him. He is showing us that he is Compatible With Life. He's potty trained, can understand yes and no, is happy most of the time, walks, and more. 

I've been emailing and calling my senators to help save Medicaid. There is a list of Senators, and how to get ahold of them here: http://contact411.blogspot.com/2017/05/us-senators-115th-congress.html

You can use my nephew Emerson's story, or a story of someone you know to make them understand how Medicaid has helped. 

Their phones should be ringing off the hook, but people just aren't standing up for those that need it the most. 

If you don't know what to say there are helpful scripts here: https://medicaid.publicrep.org/feature/call/

Thank you so much!

Emerson thanks you too!

Dance Recital

Last night I went to my first dance recital. It's a fact that I've never been to one in my life.

I have 2 sisters, and none of us were in dance. Most of us had boys, with the exception of one niece and they weren't in dance. I thought at one point in time that I'd put Mica in dance, but never did. I think we chose jujitsu instead. Time wise and financially kids just can't do it all.

When things come up for special needs kids, my sister signs my nephew Emerson up. Some things have been great for him, while others were flops. 

Water Therapy for example was horrible on many days. Later my sister found out from a speaker at a Trisomy Convention that warm water in particular is horrible for kids with Trisomy 18. The speaker has partial Trisomy 18, and he felt like warm water was shocking him. Emerson now had cold baths, and does alright with that.

Fusion Dance Studio that took in kids with special needs to have some dance classes. Volunteers helped the kids. So many of them love to dance! 

I was undecided if I'd be able to go. The studio was pretty far from my house, I have a mountain of things to do, and Isaak had a birthday party he was at that got over when Emerson's recital started.

My sister couldn't decide if Emerson was well enough to dance. Then my aunt mentioned that if he wasn't well enough he could just go in his wheelchair. He didn't end up going in his chair.

Time rolled around, and I was done with one of my main tasks. I hurried over to see my nephew dance.

He didn't look like his happy little self. He was more the stare off into space Emerson. I know he hasn't been sleeping well, he's having seizures, so he's on a new medicine for that, he's still cutting his molars, and there may be more wrong with him that we're unaware of at this point.

When the music started Emerson did seem to want to dance though. He loves to bob up and down. The other kids really got into their routine, so it was fun to watch.

I kind of forgot that Emerson didn't have his hearing aid on. He probably couldn't hear the music, nor could he hear anyone say, "Emerson smile!" or "Emerson look." If his hearing aid falls off it makes a dial up internet sound.

He looked super sharp in his sequin vest!

Here's a photo with my sister and him afterwards:

You can tell that she was super proud to be his mom. I was a pretty proud aunt.

Do you have anyone in your family that likes to dance? 

Vote For Emerson to Win a Special Needs Bike!

My nephew Emerson needs your votes! I didn't think you could vote more than once, but you can. You just have to clear your cookies off your computer first, or if you are using Chrome you can click in the upper right were there are 3 bars, and vote daily. 

Here's Emerson on his special needs bike at therapy:

Click on the picture to go to the voting page.

He concentrates so hard to pedal those wheels! He's come a long way since birth! Winning a bike can help him continue therapy when he's at home. There are times when my sister just can't get him to therapy (like if Emerson is sick, or it's flu season). She just doesn't want to chance him getting a cold that could turn into pneumonia. 

There is a bunch of donation options before the vote button. I'm not telling you not to donate, but you don't have to donate to vote. 

Every kid deserves a bike. Emerson really could use one. - Thank you!

WW: Dressing Up {Linky}

Every once in awhile one of my boys will come out of their rooms looking ridiculous and fun. I don't even know what to call what Isaak is dressed up as. Possibly a Nerdy Dapper Fat Man on a Safari.

I have a favor to those that comment: My nephew Emerson has Trisomy 18 - a chromosome disorder. My sister is trying to win a special needs bike for him. 

Please go HERE to vote. 

You'll see a lot of donation stuff. You don't have to donate to vote. You don't have to sign up for anything to vote either. You can only vote once. If you vote leave in your comment here - VOTE, and I'll comment on your blog twice. Thank you!

 

Hansel & Gretel: Fairy Tale w/ Down Syndrome Twist Review

I love classic stories with a bit of a twist. Hansel & Gretel: Fairy Tale w/ Down Syndrome Twist is a very inspiring book.

Since we have a family member that has Trisomy 18, it's important to me to have my kids understand that having disabilities doesn't make someone not special. They are special. Many kids and adults that have special needs touch the lives of others daily.
 

This adaptation of the classic Grimms’ tale includes the wicked witch and the poor siblings in search of food; but in this version Jewel Kats’ main character, Hansel, is a mischievous, yet courageous, five-year-old boy with Down syndrome. The original is pretty dark. I remember as a kid I was sort of scared of the story. In this version it's not as dark. Hansel does save the day!


I had Mica read this book to Isaak. Some of the words are too hard for Isaak to read. They both enjoyed the book.

"The fisherman interjected. 'You've always been too overprotective of the boy. He's not sick. He has Down syndrome. Let him go out in the world. At the very least, he can keep his sister company.'"

Young readers of the book will get the message that children with Down syndrome are capable and can achieve extraordinary success with determination. 

Hansel’s story will also teach by example that people cannot be judged by appearance. So many people that have special needs are happy, giving, and love attention. Those are all good things that we should focus on.

I love Jewel Kats’ insightful story. The illustrations by Claudia Marie Lenart are so whimsical. I have a friend that makes fiber art, and it's neat to see that type of art put into a book.  

Hansel and Gretel: A Fairy Tale with a Down Syndrome Twist

Publisher: Loving Healing Press
Series: Fairy Ability Tales
Author: Jewel Kats
Illustrator: Claudia Marie Lenart
ISBN-13: PB 978-1-61599-250-8 / HC 978-1-61599-251-5 / eBook 978-1-61599-252-2
Cost: Kindle $4.95, Hardcover $23.61, Paperback $14.36
Trim: 8.5 x 8.5 (44 pp)
Audience: 5-7 years
Pub Date: 10/01/2014

I feel like this book is great for anyone. Not just people that have special needs kids in their lives. I remember being in the hallways at school, and seeing kids that have special needs. I was afraid of them when I was little because I didn't understand their disabilities and abilities. A book like this would have made me feel more at ease with them. They to are just people. They often have a lot to offer!

I received one or more of the products mentioned above for free using Tomoson.com. Regardless, I only recommend products or services I use personally and believe will be good for my readers.

Thank You For Your Votes

Little Emerson didn't win the special bike.

I just wanted to thank all those that did vote, and shared! Rosey at Mail4Rosey shared so much!

Just so you know every kid that was up for that raffle was deserving of the special bike!

This little guy won:

Source

He to has many development delays.

I'm happy for their family! What a great opportunity for families to win something so great!

Please Vote to Help Emerson #Win a Special Bike

I don't normally ask people to vote for things, but...

My nephew Emerson has a chance to win a special needs bike. He loved using the one that he used in physical therapy. All the equipment for kids that have special needs are super expensive!

Please go here to vote for my little nephew Emerson.

If he wins, he'll get to enjoy one of these:

Thank you!

An Inspiring Story

What to Get?

Cousin Emerson turns a year old towards the end of June. I'm trying to decide what to get him?!? We share almost the same birthday. Aunt Terra's due date was on my birthday. He's beat his odds. His little life has in no means been easy on everyone. He is however a very sweet, cuddly boy! The odds say that with Trisomy 18, only 10% of babies make it past the 1 year mark. He's almost there!

I know my sister is asking for her family and friends to bring money to donate to the SOFT organization. That is an organization to help support Trisomy 18. I'll do that. I want to get the little man something as well.

We have a lot of boy stuff. But I want something unique to Emerson.

I thought since his brothers and my sons are so into superheros one option is this Super Baby Romper with his name on it. Emerson is his brother's super hero.

Another option is to get him something to help him with his physical therapy. I'm still searching! I'd like something that lights up, that he can hold onto. He loves stimulating toys like that. It's not easy finding toys for special needs babies! I did find these blocks from Haba. They have bells and different things inside each block. He's not there yet, but maybe will be in time.

I know it's very unlikely, but if you know of any sites that are geared towards special needs kids, please let me know. If not now, sometime in the future I'll be looking for more toys for little Emerson.