I have NO IDEA why I waited so long to take Finley to NAPA Center. I think that I just figured all therapy was the same and that we were doing so much already, I assumed that all intensives were the same. People reach out to me every single day with “try this” and “try that” and at some point I just started thinking, “Nah- we are all good!” Matter of fact, my first day there one of the visiting therapists said to me, “I reached out to you a few years ago and told you that Finley would greatly benefit from this therapy,” I don’t remember every single email or message, but this one I remembered and I know I brushed her off. I feel so horrible about my ignorance, but you know what? You don’t know, what you don’t know. I brushed off the first friend that shared about SDR with me too. It’s all a learning experience, there’s no manual for raising a child with CP- but I am doing my best to offer resources from my experiences.
At Napa they do a few things that most places don’t.
CME is a dynamic technique used in physical and occupational therapy aimed at provoking improved postural responses in patients to promote progress toward developmental milestones.
The SpiderCage is a three-sided wire device that uses a belt and eight bungee cords to enable the child to perform balance and strengthening exercises with proper positioning and alignment. The SpiderCage assists the child in standing without a therapist’s assistance while allowing freedom of movement and facilitating balance.
The NeuroSuit frames the body providing support and resistance simultaneously. It facilitates proper movement and provides additional weight bearing distributed strategically throughout the body.
People FLY from all over the WORLD for their INTENSIVE THERAPY PROGRAM. Now I know why. NAPA opens up the calendar once a year and thats why there is a long waiting list, I remember thinking: I’ll wait, but DON’T!! DON’T WAIT!!!!
They recommend intensives a few times a year. It was about $5k out of pocket since it was “out of network” for our Insurance. Our deductible is met now though, so we are planning another trip in December. I was wondering what the heck the people that go 3x a year do for a living, but then I realized It gets less expensive each time you go with the calendar year.
Where do I stay?
For those of you traveling from out of town, I recommend staying close by. It’s in a busy and confusing part of LA and unless you’re accustomed to madness, stay within walking distance across the street. I believe they have a rate and NAPA can guide you in the right direction.
What about my other kids?
There’s a parent room and a little school program located in the same building that you can enroll any siblings in, 3 weeks is a long time and you’re going to want to give you full attention to your kiddo thats receiving the therapies. So definitely ask about that!
What about food?
Instacart + Door dash might just be the greatest invention ever! You can have goodies delivered to the center so you never have to leave. There are also vending machines on site for water/snacks. Theres a full kitchen in the parent room with coffee on tap! LOL, that was my favorite!
What should I bring to session?
Wear comfy clothes, Water, Snacks, Phone Charger, Tissues, Wipes. I always brought Finley in her adaptive stroller so I could use that as a home base for all my stuff. I worked while I was there so I brought my lap top and a charger as well.
How can I mentally prepare?
Prepare to experience TONS of emotions. Nothing can prepare you for that. You are going to see your child struggle like they never have before, you’re also going to witness tons of kiddos around you that are all fighting different wars. It put a lot in perspective for me;
I look to my right and theres a child learning to jump over hurdles. I long for the day Finley is working on that skill.
I look to my left and there is a child who is non-verbal struggling to learn to sit up. Then it makes me feel awful for LONGING for more skills, when I should be so grateful for the skills she does have.
You are going to be all over the place.
Its long days- in a new setting- you’re not home and can’t distract yourself with home-tasks. It’s a lot, but its the BEST!
On the last day the emotions hit me like a ton of bricks! THAT I was not expecting! I was sobbing uncontrollably.
They will tell you one week is more difficult tha the others, but as I talk with more and more NAPA families, it’s different for everyone. So don’t think you’re out of the ‘emotional woods’ at any point. It’s coming but you need to let yourself feel it all. As your child is growing, so are you.
They will record videos for you and give you a home program to work at home. I AM NOW a HUGE NAPA advocate!! If you’re on the fence, get off of it and just do it! You won’t regret it.
(video coming soon)
Say hello to the adaptive life and goodbye to standard shoe rules…
This is a very LONG AWAITED blog on my part, but I’m excited to finally be finishing it. Finley has been wearing orthotics since she was 15 months old, and before that- shoes never really worked right because of her Spastic Diplegia. Translation: her toes were constantly pointed, making shoe wearing nearly impossible.
Up until then, the stretchy and malleable moccasins from Etsy, they slid-on and were a great option. (No specific brand.)
NOTE: YOU WILL BE FRUSTRATED WITH THIS, SO TRY YOUR BEST TO MAKE IT FUN.
The number one thing I hear is, “How do I know what size to get? Do I go a size up?”
I never understood this for myself, because once Finley got her AFO’s I never bought shoes to fit her bare feet. I would take her AFO while it was on, and have it sized for shoes. This was our norm.
YOUR NEW GOLDEN RULE:
No buying shoes before trying them on. Unless you’re down to buy two pair online and then send one back.
The smaller the AFO the HARDER it is to find shoes that fit.
It is really hard to find shoes that are WIDE enough for AFO’s that are not a few inches too long. Finley had a wide foot to begin with, so we know the struggle. However, if your child is not predominantly weightbaring here are a few options I can provide you with.
The first shoes we got were moccasin boots by a brand called, Gracious May. They’re lightweight and while they didn’t provide much added support, they served as a slip over the braces. This was great, because Finley wasn’t very mobile on her feet, it was perfect to stay on through crawling while protecting her toes. Naturally the toes began to wear down-but we were happy with the quality of the boots. They were worth the price, because of their quality, convenience, and cuteness. I just put the AFO on her foot and measured the length, width, and circumference around the ankle and emailed it to them and they determined the size.
Ballet flats were another option for us. Again, because Finley didn’t spend a lot of time on her feet- we were able to get by with these flats from Target. My best advice is to take your kiddo with their socks and AFO’s on and plan a day to go to a few stores and see what brand fits.
Moccasins were also a type of shoe Finley wore. I loved how easy they were to get on and also how lightweight they were during the hot months. I recommend taking measurements of the foot with the AFO on and getting the length, width, and size around the base of the ankle while standing.
Finley pretty much rotated these different shoes up until she was about 4 years old and began bearing more weight in pre-school. She needed something sturdier to wear on the regular. Another trip to Target with determination on our side, we FOUND a pair in the boy’s section. There were a few that fit, however these had the best fit that weren’t 4 inches too long.
As Finley grew older, SHOES for AFOS became a THING. There are 3 brands that we’ve partnered with over the years and are VERY pleased with their QUALITY. TAP on a pair to link to INSTAGRAM.
I WILL REITERATE I RECOMMEND GOING AND TRYING SOME ON BEFORE BUYING. Nordstrom carries all three brands.
Finley has also worn a lot of rainboots in her day and I think they are so cute! My RAINBOOT HACK works better for aesthetic reasons, not literal water protection (we learned that the hard way).
NOW, if you know the AFO SHOE SIZE and you want to get to shopping, i’ve made an amazon shopping list with all of our favorites for your convenience!
MORE HACK TIPS:
remove the sole.
don’t be afraid to cut the shoe or remove the tongue.
DO YOU HAVE SOME HACK TIPS THAT SHOULD BE LISTED HERE? POST THEM PUBLICLY ON INSTAGRAM AND USE THE HASHTAG #AFOSHOES !!!!!
Sooooo…. Kybella always scared me.
I almost did it once, but when I read the term “BULLFROG” to describe the healing process I was like, I just CAN’T do it!
I am a hairstylist and a mom, so every time I look in the mirror while working or see a picture of myself with my kiddo- my focus is drawn to my double chin. We’re all our own worst critics. Sad, but true.
I decided it was time to give it a shot! I went and saw my favorite place THE TREATMENT. Jacqui was the PA that administered my Kybella and she did a fabulous job at making me feel informed and comfortable. The staff in the office is always so professional and kind- the vibes you get when you walk in are very welcoming and I really appreciate that.
How it went down.
They numbed me first with a topical and then injected more numbing into my chin. I was completely numb when they put the dots on my face.
I don’t typically get anxious for treatments, so if needles make ya woozy- I think half a Xanax is totally called for.
Why so many dots?
So the goal is to inject a little bit of the Kybella into every fat pocket in the area. I guess it burns really bad, but I was completely numb- so I didn’t feel any of that. Half the time I didn’t even know the needle was in my face- Jacqui has GREAT hands is all I can say lol!!
so what is kybella actually?
The active component in Kybella is a manmade version of deoxycholic acid, which works similarly like the body's natural DA to dissolve and absorb fat cells. Once it's injected below the chin, you can see a visible decrease in the volume of fat. After the fat cells are eliminated, it does not re-form, so you can enjoy your new, slimmer neck and clear jawline.
so you got kybella and then what?
Well, I went home and iced my chin. I tried to not look in any extreme direction, I naturally just didn’t want to touch or mess with my Jaw/Neck. You will not want to look into the mirror, thats okay. LOL. With every step I took, I could feel my chin jiggle- and that was so weird that I had to make fun of it! I definitely recommend sleeping with an extra pillow under you to keep your head elevated.
life as a bullfrog
I would say my bullfrogness was really only BAD for the first 3 days. But, not bad enough that I wanted to lock myself inside. A little neck scarf and we were good to go! People were so confused why I was so swollen, but its because they are injecting fluid into your chin- the fluid takes time to absorb the fat. It’s not just swelling…. its actual fluid inside you.
okay lets see your before and after!
I had the procedure done FEB 25. I had 2 VIALS injected into my face ($600 per vial) This side by side was created on APRIL 16. Just a week shy of the full expected healing time of TWO MONTHS. (I know, it seems like forever- but it actually went by fast!)
wanna see more of my healing process?
(( VIDEO COMING SOON ))
If your’e considering kybella i highly suggest a consulation with the treatment.