Showing posts with label special needs. Show all posts

Special Needs Homeschool Teaching Resources

Yesterday on my Instagram I went through and showed everyone what Kinsley's teacher had sent home for her to work on, and I said I'd do my best to compile a list of resources for any parents out there still navigating these dark waters without much instruction from your schools. 

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I do want to start off with the fact that special education is literally so subjective and individual. That's why these kiddos have IEPs or Individual Education Plans. It's right in the name, individual. What Kinsley is working on could very well be different than what the nine other kids in her class are working on, and could be completely different than what your child is working on as well. 

The resources I'm linking you to in this post are to for activities similar to what Kinsley is working on since that's all I really have to go off of. You know your child best though, so out of these things, take what works for you, and adapt it to what will work best for your child. 

Kinsley has been working on this same name tracing worksheet since preschool. Luckily after three years she's gotten really good at it. To make your own worksheet, CLICK THIS LINK, scroll down and on the portrait option side, type the name you want, traditional font, and then generate worksheet. It will spit you out a sheet that looks like this with your child's name. 

If you can laminate it, I would. Kinsley does this every single day, so it will save you ink and paper if you only need to do it once. 

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If you want to make some flashcards at home, the ones LINKED HERE are the ones I would do. There are flashcards at the Target Dollar Spot, and at Dollar Tree, but I find the ones at the store that you buy have extra pictures and words on them (like A is for apple and a picture of an apple), and that can be distracting, at least it is for Kinsley. These printable ones are just the letter without other distractions.

To print these, click the options for upper-case only, all letters of the alphabet, US Letter for paper size, and I personally like the 8 cards per page option best. 

Then repeat this process for the lower case letters too. 

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Kinsley is currently learning her upper and lower case letters, but it's easier to have them on separate cards so that it's not distracting. I put the card down, and she tells me what the letter is. Before she could do this though, I'd lay four cards in front of her (such as A, B, C, and D), and ask her "which one is A?" and then she would give me the card. 

Once we identify all the letters, we go through one last time and I have her tell me the sound each letter makes. 

The same website for letters also makes number flash cards too. To make these, simply put in the number range you want (we have 1-20), and then select 8 per page, and print. 

To work through these, I put the card down and Kinsley tells me which number it is. Once we go through them once,  we put them away and just move onto the next task. 

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Shapes is another task that Kinsley works on each day. We go through this worksheet one time and have her name her shapes, and correct her where she makes mistakes, and then have her identify the colors. I like this sheet since it has the shapes colored in, meaning you can use one sheet for both tasks without having to print something else. You can also cut this into flashcards too, but we have ours as just one full sheet, and just point to each one we're talking about. 

Also Kinsley's sheet calls a diamond a rhombus, and I feel like that's just not setting her up for success. She's a diamond ;) 

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Alphabet Tracing Worksheets:
We work through tracing one specific letter of the alphabet per day. She does a mixture of sheets where she traces each letter, and other ones where she traces 1-2 times and then she independently writes the letter.  I've linked you to both options above, and you can see what the sheets look like below! 

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In addition to these worksheets we also count out loud to 20, and then count 20 objects. We also read before bed each night, and work on some educational Ipad apps (Lexia and Imagine Math) for 10 minutes per app. Once those things are done, we're done with work for the day! 

I hope this post was helpful! I know how stressful this whole coronavirus/homeschool thing is, but it's even more stressful when you have a special needs child and their learning style isn't like your typical child. I'm happy to answer any questions when possible! 


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FREE Easter Springtime Coloring Pages

Spring is right around the corner and I'm sure we're all looking for simple things to do with our kids these days. I made some fun Easter printables for my own kids over the weekend and thought that it would be fun to share them with each of you.


While we're in the throws of homeschooling and being with our kids all the time, I love to use the afternoons to let our kids be more creative. Whether that's painting, coloring, making jewelry with beads, baking, etc... I really like to let the creative juices flow in the afternoons. Having some new and exciting coloring sheets on hand is an easy way to introduce them to something they haven't seen before, and give them them something new to spark their interests. 

Click here to download your free springtime coloring pack! 


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Our Daily Routine During Coronavirus

There are a lot of "daily schedules" floating around the internet dictating what we should be doing with our kids while they're home from school hour-by-hour and minute-by-minute. And while these schedules are surely well intended I think that it can add a lot of unnecessary pressure to your day, and make this time way more rigid than it needs to be. I'm planning on sticking to a schedule with my kids, but I like to think of it more as an order of operations, where we complete one task, and get to the next one when it happens. Not living by the clock, but letting the natural momentum of the day get us where we need to be. 
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Morning: I have zero intentions of setting an alarm clock and getting my kids up by a certain time. We'll wake up when our bodies wake up. Once that happens we'll get dressed, do hair, get leg braces on (for Kinsley), and then head downstairs and eat breakfast. Once breakfast is cleaned we'll get into our school work for the day. 

Kyle's school is very rigid and structured when it comes to what he should be doing each day. I'll set Kinsley up with some education apps on the iPad, and work through Kyle's work with him. When his work is complete, I'll set Kyle free on the iPad while I work through Kinsley's work (TBD), and therapy goals with her. 

Afternoon: Once we get done with the school work we'll make lunch, eat, and clean up. After that I plan on getting my kids outdoors for at least 30 minutes. Vitamin D is life, and just because they told us not to go to work and school doesn't mean we're not allowed to get fresh air and sunlight. Adding this into our daily routine will be a sanity booster for everyone. 

Once we come back inside I really plan on letting the kids lead the day. We have plenty of craft supplies for whatever art time they want, board games, toys, books, cooking, etc... this is free time where they can do whatever they please, and I plan on getting my own work done. 

Around 4pm I'll likely make everyone get the house cleaned up so that it's not a disaster when Derek gets home. I need our nighttimes to be peaceful, and cleaning up before dinner is a great way to set the tone for the evening. 

Evening: Once the house is picked up we'll make dinner and eat. After dinner we do prayer, scriptures, PJs, bath, teeth, stories and bedtime. We usually have bedtime between 6:30-7pm every night. Kinsley usually goes to sleep at this time, and Kyle can stay up to read until the sun goes down and he doesn't have light anymore. 

I'm really not about running a rigid schedule while the kids are home. Yes I want to do school work in the morning when everyone is fresh, but after that, lets enjoy these kids and the unprecedented time we have with them! What does your schedule look like these days? I'd love to hear in the comments below! 


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8 Ways We're Getting Through Coronavirus

I'm sure that this is a common post going out on the internet this week with schools closing rapidly across the nation as we try to contain the coronavirus from spreading. My kids are home through the end of March followed by Kinsley's week long spring break the first week of April, and Kyle's spring break the second week of April. I'm trying to be as positive as possible, but Kinsley has been out of school due to her own illness since the last week of February, so when all is said and done, she'll have missed five weeks straight of school. I'll also have had kids home from school for six weeks total by the time Kyle's spring break is over.

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All that being said, I think we might be fearful of going a little stir crazy. Today I want to share some tips and things that we're implementing into our own home to keep things moving in a positive direction over the next month. 

Dollar Tree Craft Supplies:
One thing I did a few weeks ago was raid the craft section of Dollar Tree and make a little craft station for our kids. I used some mason jars, and the box the mason jars came in to organize all the things we had on hand, and then sorted some small pieces into six different jars. All together we have:
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  • Construction paper
  • Paint
  • Glue
  • Paint Brushes
  • Google Eyes
  • Pom Poms
  • Stickers
  • Popsicle Sticks
  • Pipe Cleaners
  • Beads
  • String
  • Glitter Glue
I feel like this is a wide variety of items that really lets our kids do whatever they want. Painting, creating, making, they have free will and free range to do it all! When Kinsley starts getting grumpy my go-to is to pull this box out of the cabinet and it turns things around in seconds. 

Learning Workbooks:
Kyle's school sent home all his text books, and a major game plan for how education should pan out over the next few weeks. That being said, we don't have much of a plan for Kinsley (yet). I've been a huge fan of these School Zone Workbooks for ages and they have books for children 3-8 years. If you don't have specific things to work on from your schools, this could be a good starting place to get something done.

That being said, I'm only doing the learning thing because we've been told to do it. If it doesn't work for you, don't feel pressured. We're not making a full blown homeschool curriculum. I'm literally planning on just getting Kyle's work done with him while Kinsley is on the iPad, and then switching and doing Kinsley's flash cards and daily PT stuff with her while Kyle is on the iPad, and then not thinking about school again until the next day. 

Free Coloring Worksheets:
The internet is full of free coloring printables. I love these St Patrick's Day ones that Angela from About A Mom recently made, but you can find other ones for any holiday, character, or occasion you could ever need. 

Come Follow Me FHE:
Angie from Come Follow Me FHE is an amazing resource for LDS Families. She makes weekly lesson plans based off of the church's Come Follow Me lesson plans and gears them towards children. With church being canceled, this is more valuable than ever. She also has a coloring page subscription that you can add to your account where she comes out with new coloring printables each month!

Right now she's offering a 30 day free subscription to her lessons, and sharing time resources as well. Click here for more details.

Board Games:
This is a great way to kill time, and spend time together as a family. I wrote this post a few years ago about our favorite board games for younger kids, this review for Pegs in the Park, and my friend Janssen has this post about board games here.   

Bake with your Kids:
Baking a treat in the kitchen with your kids is one of the best, and tastiest ways I can think of to spend time with your children during the coronavirus. Some of my favorite recipes to make with kids are my sour cream banana bread recipe, these chocolate chip cookies, and this maple frosted applesauce cake. 

Get Dressed Everyday:
I know it can be super tempting to stay in your sweats or PJs all day long when there is downtime like this, but you're going to feel a lot better if you take the time to get dressed and get ready for the day. I really feel like there is power in the, "look good, feel good", mentality.

I also plan on making my kids get dressed, and do their normal school morning routines. Hair, brushing teeth, leg braces for Kinsley, the whole nine yards. Mostly because I don't want to get out of the habit of doing these things, but also so that they're ready when we decide to go outside later in the day.

Get OUTSIDE:
I think a lot of people have this idea that we need to be in our houses hid up from the world for the next 2-3 weeks. Yes, we should not go to school, and avoid social gatherings, but that doesn't mean we can't go outside for a walk, or take our kids to the park. I believe in fresh air and vitamin D, and I'm making that a priority for my entire family each day.

What are you prioritizing these next few weeks? I really want to make this time special for our kids and not feel so pressured to be on a tight schedule! How about you? 


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Kinsley's SDR Evaluation at the Gait Clinic

Yesterday we went to Shriner's to have Kinsley's first evaluation for her Selective Dorsal Rhizotomy surgery that she might possibly be getting this year. I won't go into all the details of this surgery, but if you want background information Selective Dorsal Rhizotomy (SDR), and how it reduces spasticity and muscle stiffness, you can read this post here to learn more about SDR surgery.


We got to Shriner's at 1pm, and headed down to the Gait Lab. When we got there they didn't waste anytime asking lots of questions, got Kinsley changed into some shorts and a tank top so they could see how all her muscles are working and we got down to business.

The first thing the physical therapist did was get a video of Kinsley walking with her leg braces on, using her walker. She "ran" (as much as she can), up and down a blue lane while PTs filmed her from forward, behind, and at her side. They also had two stickers on each of her knees that communicated with a computer that would read what her muscles were doing, and eventually spit that information out into some type of report.

They then repeated all of this without her leg braces on, and that's when all the drama and meltdowns happened. Kinsley has literally never walked with her walker without her leg braces. It was really eye opening to see how much she struggled, how high her muscle tone really is, how much she walked on her toes and could not get her feet flat on the floor, and how painful it was for her to do that. It was a sucker punch to the gut for sure.

I then had to fill out a bunch of questionnaires, they manipulated Kinsley's legs and feet into a bunch of different directions, took a ton of different measurements, and added that to her file as well.

Collecting all of the data took about an hour and a half. They then went on to tell me that it will take about two weeks for them to get all the data from her tests, and then they will take that data and send it over to the doctors at Primary Children's Hospital.

The pediatric neurosurgeon and team at Primary's get together for what they call a "spasticity clinic" where they meet together in a conference and will talk about Kinsley and any other children with cerebral palsy being considered for the surgery once per month (unless they don't have enough kids to talk about and they'll skip a month...) During that meeting they'll review Kinsley's report from Shriner's, watch the videos of her leg muscles, and make a call on what they think the best thing for Kinsley moving forward is.

After they meet together, we'll get a call and they'll let us know if they think Kinsley is a good candidate for surgery or not. What I thought was going to be a really quick answer is really going to be something that we're going to have to wait 30-60 days to hear back on.

Another slightly frustrating thing is that we talked to some friends whose daughter is having the surgery at the end of next month here in Utah. They scheduled their daughter to have the surgery in July, and aren't actually doing it until now, seven months later. So even if we get accepted for the surgery, it looks like it's actually going to be a really long time until anything happens.

The reality is we could be a solid nine months out surgery. It's a long time to just be sitting around and waiting, but I also need to remember that this is all in God's timing as well, and that His timeline always reveals some amazing things in all the waiting. It just means we have nine months to do even more work, more physical therapy, get Kinsley even stronger than she is now, and the stronger she is before surgery, the better the long term outcomes will be after surgery. As always, we'll keep everyone updated as we learn more!


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Kinsley Got A Make-A-Wish

We've been going back and forth for years as to whether or not we wanted to do a Make-A-Wish for Kinsley. We had heard of lots of other holoprosencephaly families doing them, and so we figured getting approved would be easy, but it took us forever to finally get on board with actually applying for one. 

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The main hold up was figuring out what Kinsley's wish would be. We thought that she would really love doing a big trip of some sort, but then we also thought it would be amazing to use the wish to get a service dog. We felt like we didn't want to apply for a wish before we really knew what we wanted to do, so we kept waiting until we decided what would be best for her and our family. 

About a year ago we got this strong desire to get a dog, and after talking to several people about service dogs, we felt like it personally wasn't the right move for our family. We definitely wanted a dog that was more of a family pet that everyone could enjoy, and ultimately decided to adopt from a local shelter. 

At this point we knew that Kinsley's wish would likely be a fun trip, so we started going through the process of getting her a Make A Wish. We started the application process, handed everything in on our end, and the only thing left to do was for them to have a phone call with our ped to confirm her diagnosis and condition. 

They sent us a letter in the mail about a month later stating that after talking with Kinsley's ped, they felt that her condition wasn't serious enough to grant her a wish, and they denied our application... awkward. 

They did give us a list of other wish granting organizations that we could work with though, and ultimately decided to apply for a wish with The Sunshine Foundation. They do a lot of wishes for kids with cerebral palsy, autism, and kids who were even victims of some sort of trauma. They seemed to be much more inclusive with their wishes, and figured this would be our best bet for getting something for Kinsley. 

We filled out the application with them and found out a few months ago that she was approved. We were then told that we have two options. We could either 1) get on a six year waiting list for her to have a trip to the Disney Dream Village in Orlando Florida where they would send our family to stay for one week with passes to Disney World, or 2) they would give us $2,000 to fund our own trip, but this option would also involve a multiple year wait list. 

We went back and forth for a few weeks trying to decide what we ultimately wanted to do, and decided to hop onto the six year waitlist for the Disney trip. We figured that what they could do for us in Florida would be way longer and better than what we could likely do on our own for $2,000 and decided that it would be well worth the wait.

So here we are, anxiously waiting for six more years when Kinsley is 11 and Kyle is 13 when we will go on the trip of a lifetime to Disney! Derek and I have both never been, and this will be the kids first time too, which I think will make it so special for all of us. 

I keep thinking about the amazing things ahead in the next few years. Kinsley possibly having SDR and possibly walking independently. Could we find ourselves at Disney in six years with her walking on her own from ride to ride? It seems like a really magical way to celebrate all the years of hard work that have and will lead up to this amazing trip for our family, and I can wait to live the life that leads us there.


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Please Don't Give Handouts to My Disabled Child

This is a really hard topic to write about because I'm sure it will cause some controversy, but it's something that I've felt very strongly about the last several weeks, and I think it's something that should be discussed. 



On Halloween we were trick-or-treating and a parent recognized Kinsley from our school and was telling Derek and I how sweet Kinsley was. We thanked her, and then she went on to tell Kinsley several more times how cute she was and gave her three huge handfuls of candy, and kept dishing it on thick... right in front of Kyle, who she said nothing to, and didn't give him any extra candy.

So she taught my one child that she can have extra of things because she's cute, while also completely ignoring my other child and I'm sure creating some sort of mental complex in that regard as well. 

A few weeks later I saw an advertisement on Instagram that a local museum was giving people in wheelchairs free admission. There was something about that though that just didn't sit right with me. 

I feel like people giving my child things because she's cute and has a disability, and letting her into places for free just because she has a wheelchair is creating a since of entitlement that I'm really uncomfortable with. I don't want my daughter to grow up and expect that she can have things, simply because she has a disability. 

I want her to grow up with the same mindset as everyone else that she has to work hard in order have the things she wants. 

The other side to this coin is that I realize we just went to "The North Pole" with Delta airlines for free where my kids got to go on an airplane, meet Santa, get a toy from Santa's workshop, and have a really amazing and elaborate once in a lifetime experience, that they wouldn't have gotten had Kinsley not had a disability. 

I feel like the difference here is that everyone had a disability. Everyone was getting the same once in a lifetime opportunity, and I recognize that there is a very real reality that these kids don't get to do all the same things as normal children do. So to be able to bring all these kids together for an amazing event like this is something that I'm okay with, especially since we're not doing these grandiose adventures every week... or hardly ever.

The difference is that Kinsley will have many Halloweens filled with trick-or-treating. She will have many opportunities to go to local museums. These are everyday experiences that she participates in just like every other child, and because of that, she should be treated just like every other child. 

Please don't shower my child with extras or handouts from a place of pity. My child doesn't need your pity. She has a rich, full, and amazing life, and deserves to be treated the same as any other child, without creating a false sense of entitlement because of her disability. 

This isn't to say that you shouldn't do nice things for people with disabilities, but that can look like so many other things. Smile at them. Say hello to them. Be their friend. Open a door for them. Help them with a task they can't complete independently. If you want to do something for someone with a disability, these are all great places to start. 

I'd love to hear what your thoughts are on this topic, both as an able-bodied individual, or someone with a disability, or someone who is a care taker for someone who has a disability. I'd love to know what your thoughts are on this topic in the comments below!

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Getting Answers: Selective Mutism

"He'll grow out of it" or, "He's just shy, there's nothing wrong with that." Those are two common answers that we've been given time and time again over the last... basically seven years with Kyle. He's always been anxious, slow to talk, does not speak or interact with other adults almost always, it's something that we've struggled with for a long time.


Yesterday at school things kind of came to a tipping point which sparked research on our end, and led us to selective mutism. It's something that I'd heard of before, and the more and more I read, the more it sounded just like Kyle. 

Since making this video I've been in touch with his teacher, who has been incredibly supportive and agrees that it 100% sounds like Kyle. She's sent the information to the school psychologist and the school speech pathologist who will begin working with Kyle in January when we get back from Christmas break. It's been a long and exhausting 24 hours, but we're super grateful for a supportive team of people who are finally listening to our concerns as parents, and are ready to get him the help he needs. 



This video was originally filmed for IGTV, but the resolution wasn't working out, so I'm sharing here. Please feel free to share anything that might be helpful in regards to things you've done/experienced with your own child!

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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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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. 

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! 

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San Diego Day 2| Legoland California Resort

Yesterday was our second day in San Diego, and it did not disappoint. The entire reason we came here was because Kyle wanted to go to Legoland for our family vacation this year, so yesterday was the BIG DAY. We were originally going to go to Disneyland, but Kyle came home from school last year with a flyer for Legoland, and BEGGED for us to come here instead. I looked up the prices, and it was $800 for us to stay in the Legoland Castle Hotel for two nights, go to the park one day, and the aquarium the next. Disneyland would have cost us just about double the price, and we wouldn't be staying right next door to the park. Legoland sounded very appealing at that point. 


We started the day with eating breakfast at the hotel, and playing in the hotel courtyard before we could head into the park at 9:30. The courtyard is amazing, with wheelchair accessible playgrounds, tables filled with legos to build on, large Lego bricks that you can build life size towers with, and so much more. The kids could have easily stayed here all day to play.





If you're going to Legoland with someone who has a disability, right when you walk into the park you'll want to head into "Guest Services" directly to your right. Once you're inside, they'll give you a pass to take with you on all of the rides so you don't have to wait in any lines. We chose to come in September because we knew the park would be less crowded, and it was worth it to us to take the kids out of school to come because we knew if we were spending this kind of money, we wanted them to get maximum enjoyment. That being said, there were almost no lines, which made our disability pass almost pointless, but if you're coming in peak travel seasons, it will be totally worth it. 



We spent the morning going on most of the rides in the "Explorer Island, Funtown, Miniland USA, Imagination Zone, and Ninjago World." Kyle and Kinsley were both tall enough to go on all of the rides, and seriously loved going on the rollercoasters. I was so nervous someone was going to have a meltdown at some point during the day, but they were so happy the entire time. It was a total blast. 




Derek and Kyle had watched all of the Star Wars movies together this year, so seeing all the Lego Star Wars sculptures was a huge deal for both Kyle and Derek. They were totally geeking out together, it was super cute! 




After the Star Wars area, we headed to the Ninjago World for Kyle to pickup a new Lego set. He'd been super obsessed with Ninjago on Netflix for the last year, so he was super excited when they had an entire store dedicated to nothing but Ninjago! 

Kyle wanted to push Kinsley around the park in her wheelchair all day long, and I seriously thought it was the sweetest thing ever. I had to snap a picture in case this becomes something he loathes 10 years from now. I need to be able to remind him that at one point he begged to do it ;)


After lunch we headed to Castle Hill where Kinsley went on a horse ride that she was absolutely obsessed with. I was a little nervous because she had to mount the horse and ride the entire ride on her own without an adult, but she did so well, and rode it several times. We also let Kinsley go into the gift shop in this area to pick out her souvenir, and she walked away with a giant unicorn Beanie Boo. She ALMOST got a Disney Frozen Lego set (a practical choice when at Legoland), but once she saw the unicorn there was no convincing her otherwise. It's name is Pixi and will live with us for all eternity. 


After Pixi joined the family we grabbed a snack before heading to "Pirate Shores, and Land of Adventure" to finish off the rides that we didn't get to during the beginning of the day. At this point Derek was feeling a little sick and had to sit out on some of the rides, so he played photographer while the kids and I went on the rest of the ones we'd missed. The kids even made a friend from the hotel and rode one of the last rides of the day with her. I love how she just sat in the middle of Kyle and Kinsley and made herself at home. 



Overall I'm glad we came to Legoland exactly when we did. The minimum height for the roller coasters was 42 inches, and since Kinsley was 43 inches, she got to go on everything. There aren't any huge rides here that were too much for them, but just enough to give them that little thrill. I honestly don't think we'll ever come back, just because I think if our kids were any older they wouldn't love the castle themed hotel room, and the rides might not be as thrilling. I was telling Derek that this trip was so amazing and perfect, that I don't want to come back and think, "Man, it just wasn't as good as the first time we came." I really want to end it on a high note, and I think our kids were the perfect ages to do that. 



Another thing I really loved though was how inclusive Legoland is for disabilities. I'd heard that they were better at inclusion than Disney was, and I totally believe it. It seriously made me so happy to see that they had Lego Figure statues in wheelchairs, both at the hotel, and in the park. They really go out of their way to make sure every person of every shape, size, color, and ability feels represented, which I think is really special. 


Once we were done at the park, we made our way back to the hotel and relaxed for a couple hours before heading to the grocery store, getting some food for a picnic, and we all watched the sunset on the beach together. It was pretty cloudy, so the views weren't amazing, but there were tons of surfers to watch which was super fun! 






Today is our last day here. We're planning on going to the aquarium, and then have some time to kill before heading back to Utah at 8pm. If you have any good recommendations of things we should do, feel free to let us know in the comments!

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