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Funding A Future For Loved Ones With Disabilities

This post is sponsored by ABLEnow®. All opinions are my own.

Kinsley's future has always been this looming topic in our house that we hadn't known how to prepare for. Will she be able to live independently? Will she be able to work full time? Will she need more support from Derek and I, or another caretaker? She's been making so much progress and has certainly not reached her ceiling of capabilities yet, and so it makes it really hard to determine the level of support that she will need as an adult.


Several years ago, Derek and I learned about ABLEnow and the amazing savings program they offer to people with disabilities.  For too long, people with disabilities could not save for the future out of fear of losing their public benefits. Advocates fought hard to change this, resulting in the 2014 federal ABLE Act and the national ABLEnow program. With ABLEnow, parents and caretakers can now save for their loved one’s future without living in fear that their Supplemental Security Income (SSI) or medical benefits will be taken away from them. Now that Kinsley is being enrolled into the Utah Medicaid program for medically complex children, this detail of the ABLEnow program means more to us than ever before.


We've been contributing to Kinsley's ABLEnow account since we opened it two years ago, and it's been fun to see family members contribute to it as well. (It makes a great holiday gift!) Kinsley participates in a lot of therapeutic activities like hippotherapy and adaptive swimming. If you have a child who participates in these activities as well, you can ask loved ones to contribute to your ABLEnow account to help fund these activities for your child, and they can feel good knowing that they're helping to provide an activity that your child loves, and that has a positive impact on their health as well.


ABLEnow accounts are also a great alternative to crowd funding. Often these donation websites can negatively affect one’s eligibility for public benefits, which makes donations directly to an ABLEnow account a much smarter alternative. Anyone can contribute online, and these gifted funds can be used for medical procedures and therapies, adaptive equipment, and many other items and services that cause people to turn to crowd funding websites.



ABLEnow accounts are available to eligible individuals in all 50 states. Visit able-now.com/enter before Dec, 15, 2019, for a chance to win a $1,000 contribution to an ABLEnow account!

This is a sponsored post written by me on behalf of ABLEnow.
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Pumpkin Spice Steamer with Torani

This post is sponsored by Torani, all thoughts and opinions are my own.  #AToraniThanksgiving

Now that Halloween has come and gone, we're now getting into the thick of the holiday season. Out of town guests are stopping by left and right, holiday meals are being planned, being ready for any holiday gathering is super important to me. 


One thing that I love to do is have a bunch of food and drink items on hand at all times so that should someone pop in unannounced, we have some fun refreshments to serve. My favorite drink to sip on in the cold fall and winter months are steamers. These are essentially steamed milk with Torani flavorings mixed in. When I was in high school there was a local coffee shop that made these with vanilla, peppermint, caramel, and a wide variety of other flavorings, but my favorite was always the pumpkin spice variety! 

When making these in my home now, I love to use the Torani Puremade Pumpkin Spice Syrup. I love the Puremade line from Torani because it's made with no artificial flavors, colors, or preservatives, and is GMO free. My family and I have been making a huge push towards cleaner food options this year, so I love that the Puremade syrups align with that goal. Torani Pumpkin Spice Puremade Syrup can be used in endless ways. Simply add a spoonful to your coffee, tea, steamed milk, or cocoa to enhance any drink or recipe! 



When I'm making my pumpkin spice steamers with Torani Puremade Pumpkin Spice Syrup, I love to go the extra mile and really elevate the garnishing on the drink for our guests. To make the rim of the drink, I dipped the mug in maple syrup, and then dipped it into some coconut sugar. Once the milk was poured and the Torani Puremade Pumpkin Spice Syrup was added, I topped it with whipped cream and gave it a sprinkling of cinnamon. Lastly, I top them off with these edible leaves from Amazon, and it turned it into the most perfect fall beverage!

You can purchase the Torani Flavor of the month for 10% off each month over at torani.com. Be sure to head over and snag some of your favorite flavors to get your home ready for Thanksgiving guests!

Ingredients:
Makes 1 serving
1 Cup Milk
2 Tbsp Torani Puremade Pumpkin Spice Syrup
Whipped Cream
Maple Syrup
Coconut Sugar
Edible Leaves
Cinnamon

Directions:
Warm your milk up on the stove or in the microwave until heated all the way through, about 1:30 in the microwave, or 5 minutes on the stove.

Prepare your cup before pouring in the milk by dipping the rim in maple syrup, and then into the coconut sugar. Pour in your milk, and then add a generous serving of whipped cream.

Sprinkle the top with a dash of cinnamon, or pumpkin pie spice would work great too! Top with some edible leaves, and even some cinnamon sticks if you have them and enjoy!

The Latest Kinsley Update

We had another big appointment at Shriner's this week which brought a lot of new changes. New medication, new orthotic devices, and plans for upcoming surgery evaluations that could possibly bring more long term solutions for this little girl. 


The main purpose of our visit was to get more x-rays and botox injections. We had x-rays done on her hips to make sure they were holding at 30% subluxated, and thankfully they are. If they move to 50% we have to do hip dysplasia surgery, and the number one goal the last two years has been to keep doing injections on her leg muscles, which will lessen the pressure of her hips being pulled out of the sockets, and prevent that surgery for as long as possible. The current treatment is working, and we're super grateful for that. 

Another bonus to the botox injections is that it turns off the spasticty in Kinsley's legs, helping her to strengthen weaker muscles, walk better, and hopefully walk with less interventions in the future. She's been making amazing progress and strides over the last several months, so we've been looking into options that will allow her spasticity to be permanently removed, and not just temporarily shut off with botox injections. 

Our two main options for that are Selective Dorsal Rhizotomy, which I talked in depth about in this post here, or a Baclofen pump. Baclofen is a drug that relaxes the muscles and turns off spasticity. They can place a pump under the skin in her spinal cord that would give a continuous drip of this medicine to her spastic muscles and essentially keep the spasticity away and allow her to function better without getting botox injections all the time. The downside is that this pump would need to get refilled every six months or so, via injection of a needle into her spine that accesses the pump and fills it. So we're essentially getting rid of botox injections, for a spinal surgery and more injections, which isn't really my favorite option. I'm really hoping they just let us do SDR since it's more of a one and done surgery and no one has to go poking around her spinal cord ever again afterwards. 

Baclofen does come in an oral medication form as well. We tried it two years ago and Kinsley was the 1% of kids who had insomnia from it, so we had to take her off of it. Now that she's five, her doctor thinks she'll handle it better, and so we're currently trying oral baclofen again. As of right now when I'm writing this, she took a full dose at bedtime and went to sleep, so I think we're in the clear. 

The downside to oral baclofen is that there are side effects which wouldn't necessarily be as prominent with the baclofen pump. The major side effect we're most nervous about are seizures, so we don't want her to be on this long term, but it will give us a good idea of how her body will work when she has SDR or a baclofen pump placed, so it's a good short term solution to see how she'll react to more long term solutions. 

We made an appointment to go to the Gait Lab in January where they will fully analyze how Kinsley walks and uses her muscles, and from there they will be able to have a better idea as to whether or not Kinsley is a good candidate for either of these operations, and then we can start making more plans from there. 

There was a bit of bad news at this last appointment. If you watch this video of Kinsley walking at the grocery store, you'll notice that her right foot is turned in quite a bit when she walks. She walks really well, but would walk even better if this wasn't happening. We thought this was a spasticity issue, and that they could inject some botox in her foot today to solve the problem, but they were able to determine that the issue was related to bones and not muscles, meaning botox cannot correct the issue. 

Her foot is turning in as a reaction to the position of her hips, from the hip dysplasia. Basically her hips being out of alignment are causing the leg to be out of alignment (see pictures at top where knees are pointing in at each other) and therefore causing her foot to be off track as well. It's hard because she wears leg braces to hold her feet in the correct position, but they unfortunately don't correct the foot turn the way we'd like or hope. The only way it could be really corrected is to do the hip dysplasia surgery, but it's just so invasive and everything else on Kinsley looks fine, so they really don't want to do it unless her hips subluxate at that 50% mark. Meanwhile, Derek and I are nervous that she's going to cause permanent damage to her leg/foot, so what do you do? 

We basically have one option for right now, and that is this strap thing that essentially attaches to her leg brace, wraps up around her leg, and then around her waist. This strap will hopefully prevent her foot from turning in, and we're hopeful that her walking will look even better once the foot is in the correct position. The downside is that as you can imagine, Kinsley will likely hate this and not want to wear it, and the doctor told us the benefit won't be worth the fight. So it might work, or it might not. To get a better idea of what this would look like on Kinsley, see this video of our friend willow here. 

I know a lot of people are probably thinking, is walking worth it if you have to go through all these hoops, interventions, and adaptive equipment? I used to think it wasn't. I honestly thought that we would have given up on this goal a long time ago. But Kinsley has determination and fire. She wants to be on her feet and walking. She chooses to use her walker over her wheelchair everyday at school. As long as this is something that she keeps wanting, we'll keep fighting for her until she says otherwise. Bearing weight on her legs and using them is also really good for her hips, and helps them to not get worse. Hip dysplasia surgery is incredibly invasive, and would mean Kinsley would be in a body cast for three months straight, and we don't know that she would regain any or all of her skills again if we had to do that. 

There are also plenty of studies that state people who are full time wheelchair users have more health related concerns than able bodied individuals. The one that pulls at our heart strings the most is that full time wheelchair users are more likely to have flu related complications, such as pneumonia, and their bodies aren't strong enough to fight off infections that they sadly die from. We've known too many sweet kiddos with holoprosencephaly over the last several years that have died from pneumonia and flu related complications. It seriously breaks my heart. It's my hope that should Kinsley ever get one of these infections, that she would be strong enough to fight it and get better. 

Nothing's guaranteed, and time has never been on our side in any of this, but in a lot of ways, the fight to walk is about so much more than just walking. 

The Black Jumpsuit Everyone Needs| Kaboom Boutique Review

Jumpsuits have totally become a huge trend over the last several years, and I've seen so many that I absolutely love, but for some reason, never caved and gave into the trend. When I was getting ready for the Advocating Moms Conference several weeks ago, I kept imagining myself presenting at this conference wearing a black jumpsuit. I scoured the internet again and again, but couldn't find quite the right one.


Eventually I found Kaboom Boutique, and when I was looking through their site, their Delila jumpsuit stopped me dead in my tracks. It was everything I'd wanted and more. A super flattering v-cut that isn't too low. A tie at the waist that's super flattering and adorable. And my favorite part might be the legs. They aren't crazy wide legged, and they're not cinched at the bottom like a jogger either. They're just the perfect tailored leg that looks flattering on basically any body type! 



They have a ton of amazing pieces for fall like these "Freya Rose Flats" that are super similar to the shoes I'm wearing in these pictures. "The Parker Sweater", is the perfect shirt to wear with these high waisted jeans on a cozy fall day... and of course, the Delila jumper are just a few of my favorite pieces they sell! 


Kaboom was super gracious and gave a 20% off code for me to share with you guys! Now through October 31st you can use my code Paige20 on all your purchases at Kaboom Boutique. 

Three New Additions to Kinsley's Bedroom

We finished putting Kinsley's bedroom together about a month after we moved into our new house. And because the universe works the way it does, the second we were "done" putting it together, we wound up getting three new things that we really love unexpectedly. I thought it would be fun to share these items in a blog post, because they're all things I really love, and I think they deserve to be highlighted. 


Over the summer Heidi from Love Me Sparkle reached out to me to tell me all about her business making handmade dolls and tee pees, and that she donates 1 item from her shop to a child with special needs or medical diagnosis after every 10 sales. Someone had nominated Kinsley to be one of the children on the receiving end of these donations, and Heidi sent us this beautiful handmade tee pee. It is so well made and fits perfectly in Kinsley's room. She loves hiding and playing in there with her animals, and it's been really fun to see her crawling in and out of it, and hiding from Derek and I all the time. 


We're huge fans of these stuff animal bean bags in our house Kyle has a massive one in his bedroom, and Kinsley had one that was quite a bit smaller. We just upgraded her to this larger size one, and it fits all of her many animals perfectly. I know some people will say to purge animals, and to not buy a bigger bag to accommodate them all, but she has so many from different hospital visits and such, and each on really has a special meaning. Animals are always hard for me to part with, and I love that my kids love them too. 



Harkla was one of the companies that had donated a discount code to the Advocating Moms Conference, and reached out to see if I'd like to work with them on my blog. We've been long time fans of weighted blankets in our house, and when I saw they had a ton of affordable options on their website, I knew I had to try one to share with all of you! This blanket is so soft, and both of our kids love the minky fabric! They have blankets for kids and adults of every size. The kids blankets are weighted down with thick batting, and the adult sizes are weighed down with little tiny beads. 

These blankets are already crazy affordable, ranging from $79-$109 depending on the size you get, but you can also use code, "ABILITY-15-FALL-19" at checkout to get an additional 15% off! These will make an awesome Christmas gift this year! 

Have anything you've been loving in your home lately? I'd love to hear about it in the comments below! 

DIY Princess Carriage Wheelchair Boxtume with Amazon

This post is sponsored by Amazon Prime, all thoughts and opinions are my own. 

One thing that I've wanted to do with Kinsley since we got her first wheelchair was to make her a sweet Boxtume, or a costume made from a box. I've seen so many amazing wheelchair costumes over the years, and figured I could easily make one out of some Amazon smile boxes and some craft supplies we had around our home. 


The busier life gets for us, the more I look for simple ways to get things done. I feel like I always have a million Amazon smile boxes hanging out around our garage from all the things I'm ordering from Prime with fast, free shipping, and figured Halloween was the perfect time to put all those boxes to good use. 


Kinsley wanted to be a princess for Halloween this year and decided that I could jazz up her wheelchair with a sweet Carriage Boxtume! This was seriously so easy to put together, and took no time at all! The best part was that everything attached easily to the wheelchair without any straps, tape, or glue, which means that I don't have to worry about potentially ruining her chair, and everything snaps on and off in about one minute flat! 


Supplies:
4 Large Amazon smile boxes
Blue Paint
White Paint
Foam Brushes
Purple Marker
Pink Ribbon
White Bows



Directions:
Start by taking a wheel off of your wheelchair and sitting it on a box. Trace the inside circle of the wheel and then cut out the circle. Use the circle you just cut out to trace and cut another circle. These two pieces should easily pop right into the wheels when you're done cutting. 



Next you need to cut a large half circle carriage shape. I just freehanded this and then cut out a big window in the middle of it. Then, I took the shape I just cut out, and traced it to make another carriage window on the other side of the chair the same size as the first.



Once I cute everything out, I painted all of the pieces. Again, I did all of this free hand. I painted the lines on the wheels white, and then once the white paint was dried, I went ahead and painted the blue triangle pieces next. I then painted the big carriage pieces with dark blue paint. 


Once the paint was dried I took a purple marker and drew some loop de loop shapes all the way down the white lines and connected everything with a big circle in the middle of the wheels. 

I took some big white bows and tied them to the top and two sides of the carriage pieces, and then wove some big pink tulle through the bows to match her princess dress.


Once everything was done I simply wedged the carriage pieces down into her seat, and popped the wheel pieces into place, and I was finished!

What fun Boxtumes are you going to make this year with your Amazon smile boxes? I’d love to hear in the comments below!

Kyle's Big Boy Bedroom Tour

We've been working on getting Kyle's bedroom put together for what feels like years now. After being in a rut for so long, we finally hired a Modsy designer a few weeks ago to design the space just how we needed it to be. We needed a queen bed for guests to sleep on, a dresser, a bookshelf, and a desk, but couldn't figure out how to make it all fit in the space. Modsy did an awesome job designing it, but if we bought everything they told us to, we would have spent over $6,500 on this room. It took me another month to hunt down similar options in our budget, but when everything was said and done, we spent under $700 on this space (Some pieces we bought years ago and some new now, it's a collection of things over a long period of time. Putting rooms together is a long process in this house)! We literally spent 10% of what the design team came up with and I love the result so much! 

Doesn't it look so perfect? Sometimes when the kids are in school I come sit in here because it's just so peaceful and visually pleasing. It's the perfect balance of everything we needed, without over crowding the space. 


My very favorite part of this room is the desk. I had told the Modsy designers that we wanted a desk and a bookshelf because Kyle is reading all the time and his books were a complete mess, and I LOVED the low profile design that this desk offered, while still having plenty of room for all of Kyle's books as well. We bought these little giraffe book ends on Amazon to house all the books he owns, and then stacked all his library books right next to it, and I love how it turned out! 

The gray basket on the top shelf is what we used to use to hold his books, but now it just has some loose ends that Kyle has wanted to hold onto. The plant was in our garage from another room in our last house, and his chair is a simple $10 folding chair from Walmart. 


I get asked about the kids dressers all the time! Kyle and Kinsley both have the three drawer Songesand dressers from Ikea. Kinsley's is white, and Kyle's is the brown option.  They are awesome quality, and we've had Kinsley's for over a year now with zero issues, so we knew it would be a great option for Kyle's room too. These are $130 each which is a great price for a dresser, and they quality is amazing. I also love that they look nice, because a lot of Ikea's dressers aren't my style, but these are really great. 

The cactus light on his dresser actually came as a set with the flamingo light that is on Kinsley's dresser. I love that they came in a set and that each kid as one of the lights. The gold lamp is mostly for show and we've literally never put a lightbulb in it. The picture frames were from Amazon, and we just printed some pictures from our California trip to put in them since they'd been blank for over a year now. Finally, his macrame was the last piece to complete this space, and we'd found it for about $6 on jane.com.

One thing I loved about Modsy was all the little details it gave you for a space. My designs had a blue storage cube ottoman like this on it, with an orange animal on top, but the ottoman and the animal they told me to get were literally over $200. I found this identical ottoman on Amazon for $20, and we purchased this moose from Ikea when Kyle was a newborn, so it was fun to put this little detail together for a fraction of the cost. 



The final highlight of this space was Kyle's new Beddy's Bedding. We've been wanting to try them for years, and I was so thrilled when they gifted us a set for Kyle's room. I love that they're all handmade by local women in our community, the quality is amazing, and Kyle can make his bed on his own in about 30 seconds. 

The blankets and fitted sheet are all attached together by a zipper on each side of the bedding, and fit over your mattress like a glove. I love this bedding because Kyle's bed is positioned right next to a wall, so making his bed with a traditional blanket meant I was breaking my fingers everyday trying to get his blanket in between the bed and the wall. Now Kyle just unzips the side of the bed he's sleeping on, and then zips it back up in the morning when he wakes up... and I get to keep all the flesh on my hands. 


I also really love that Kinsley can zip the bedding up really easily too. There aren't many chores she can do around the house with her physical disabilities, but Beddy's makes it so that even kids who have a harder time doing simple tasks can be involved in the house keeping process too. They were kind enough to give me a discount code, and you can use code FLAMM20 to get  20% off your purchase! 

I seriously love how this space turned out, and I'm so glad to have this entire house that we're living in right now completely put together and settled so that we can just enjoy it for the next nine months that we'll be here!

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