***UPDATE*** We’re finally in touch with a fellow, who will be taking on Lila’s stander case! I have a good feeling this will be a promising avenue for our Lila and her stander. He hopes to use both forms of Lila’s insurance, lots of dotting I’s and crossing T’s and hopefully by spring/summer- Lila will have a all expense paid Rifton Stander at home! Hoooraaay!! He mentioned that 12 different people contacted him this morning, in regards to our blog post. Thank you to everyone who reached out to him and passed our name along. HUGE blessing! Now, we’re going to continue to leave our fundraising page up, because this process with insurance companies isn’t 100%. If our insurance companies do end up purchasing this stander for Lila, we will put our donated funds into a savings account for Lila. She does need an adaptive chair for sitting at the beach and on the floor (to play with other kids)! OR we might continue saving for a new handicap van. If, for any reason, you want a refund feel free to CONTACT me-but if you’re ok with us using the funds for other needs in regards to Lila, we promise to do so responsibly. I hope to keep everyone posted on our stander journey and if or when we receive it. Thank you again!
PS-THIS blog post was seen almost 500 times! ahhhh! Amazing. We love our little community, and their love for our Lila.
Some of you might already know about Lila’s stander situation-maybe from Facebook or from THIS blog post I wrote a few months ago. While we did find a nurse to fill our Monday position (hooray!!), sadly, we haven’t found the means of financing or finding a stander.
If you have no idea what’s going on? I’ll give you a little insight in the world of Lila.
Miss Lila was born with a rare genetic disorder that involves a deletion, duplication, translocation of genes on chromosomes 8 and X. It’s complicated. There’s no name for her disorder and it’s completely unique to Lila. She also has mosaicism, which means somehow during conception, everything was dividing properly and with bad timing-her genes didn’t make it the right location at the right time. Essentially, Lila has two sets of DNA. She has the typical 46 chromosomes and then her 45.8ish chromosomes. You can actually see her mosaicism on her lower extremities-she has what I call “tiger stripes.” Two different skin tones that make this unique stripe pattern on her legs.
Now that you *sorta* understand Lila’s genetic disorder-let’s talk about her symptoms.
Low tones-Lila’s non ambulatory. She can’t do daily functions like walking, sitingt in a bath tub, sitting on the potty, feeding herself, sitting up for a long period of time. Lila needs adaptive equipment like wheel chairs and standers to aid in her daily activities. With her low tones, she also can’t efficiently remove mucus out of her body (i.e blow nose). When she’s sick with a cold, she relies on a suction machine, nebs, inhalers, and percussion vest to get all the mucus out of her upper body. MOST of time, even with these advanced machines, Lila still ends up with an upper respiratory infection.
Non-verbal-Lila can’t communicate her wants and needs. Over the years, I’ve learned how to read Lila’s needs by her emotions and the way that she responds and acts. She NEVER cries, so when she cries-I know something is seriously wrong. If Lila’s limbs turn blue and she starts shaking-I know an impending spiked fever and febrile seizure is arriving. If Lila loses the pink color in her cheeks, she’ll have a seizure later on in the evening. If Lila falls asleep before 10pm, more then likely, she’ll have a seizure within the hour. If Lila whimpers, she’s either hungry, wants a binky, annoyed with us doing her hair or her AFO’s are hurting her. If her diapers are dark colored-she might have a UTI. If her fevers are 101-it’s a virus. If her fevers are 105-she has an infection and needs antibiotics. If Lila’s o2 stats are below 90, she probably has pneumonia.
Partial hearing loss-Lila has what we call, partial hearing loss. She CAN hear loud noises from a distance and she CAN hear people and things when they are in close approximately to her. Other than that, she can’t hear whispers, the TV, conversations from a distance.
CVI-The processing between what Lila can see and how her brain interprets that information. If I hold up two objects for Lila to choose, it takes her longer to process what I’m holding and what she wants to grab.
Cognitive delay-Lila is the development of a 6 month old baby. She relies on humans 100% of the time to thrive. If Jude, at 5 years old, was left home alone for a day-he could feed himself, grab a drink, go to the bathroom, put on clothes, grab a blanket for warmth, brush his teeth, and wash his face. At 7 years old, Lila would lay on the couch and not be able to sustain herself.
Incontinence– Lila can’t use a toilet. She has to use diapers, wipes, and chucks.
Seizures-Lila suffers from grand maul seizures. 2-8x a week. When she’s sick, double those numbers. You can’t understand a seizure, until you witness another human suffer through one. I might have become “numb” to Lila’s seizures over the years, but my heart still hurts every time I watch her suffer through one.
G-tube-Lila has a G-tube to aid in giving her additional nutrients. She does eat pureed food by mouth, but because of her low tones, she can get tired and not be able to finish eating. We supplement with formula via G-tube. Also, when Lila is REALLY sick, we give her pedialyte via G-tube to give her fluids (instead of a ER trip to receive IV fluids).
Now that you understand her genetic disorder and the symptoms-let’s talk about this stander.
Lila has needed to upgrade stander for TWO years. TWO YEARS. I’ve battled our private insurance and Mainecare. I’ve talked to the Robbie Foundation. I’ve worked with social workers. EACH time, we’ve failed. I’ve spent countless hours trying to figure out how to FUND a stander for Lila-without asking our community for help and I keep failing. I’ve looked around for used standers or a donation of a used stander. NOTHING.
Why is a stander important to a child like Lila? A stander aids Lila medically and socially. Lila, at 7 years old, wears a size 8 toddler shoe. Jude, at 5 years old, wears a size 11 toddler shoe. Your feet grow, because we stand and walk. Lila doesn’t stand as much, therefore she has SMALL feet. When you stand and walk, your bones grow. They grow in length and strength. When you stand, your spine stretches out. When you stand, you open up your lungs. If Lila doesn’t stand, her feet won’t grow properly. Her bones will become weak and brittle. Her spine will likely curve. She can’t properly clear mucus. Her digestive system won’t work efficiently. As Lila grows, this could cause an increase of issues in the future. She could possibly become hospitalized, receive multiple surgeries (rod in her back) and an increase chance of respiratory infections. You can read more about the benefits of standing HERE! They say it perfectly,
“Even with all the health benefits of standing, the unfortunate truth is it’s difficult to get the funding needed for a standing device. Medicaid and most insurance companies feel they aren’t necessary for improving someone’s quality of life, which keeps standers from being more prevalent in homes and clinics.”
The state of Maine has put out new rules and laws that has made this stander process nearly impossible. Basically, Mainecare claims they’ll give $400 to the company purchasing the stander and they have to accept that as payment in full. Standers cost $4,000!!!!! How is that even legal? Also, the state of Maine set a rule that if we want to use other forms of funding, like private insurance or the Robbie Foundation in conjunction of Mainecare- you can’t do that. You can only chose one form of funding (and we all know, there isn’t one form of funding that can pay the entire balance).
I’ve thrown in the towel with Mainecare and their ridiculous rules! I honestly don’t care about the fact that Mainecare could reap the financial cost of Lila’s future complications from NO STANDER, however, I do care about all the suffering Lila could endure in the future. My best buddy Ashley has gone out of her way to set up a GOFUNDME to help fundraise a stander for Lila. Asking my community for money to help fund Lila’s stander has always been my last resort. I never wanted to ask my fellow hard working- tax paying Mainers to help fund a stander (out of their bank accounts), when their taxes should be the primary form of payment. I STILL can’t believe I have to go this route. I’m currently swallowing my pride-because Lila standing is far more important. I really try hard to avoid asking for help…it’s like a punch to the stomach. Every. Single. Time.
We appreciate every cent. Anything. I know that if we don’t reach our $4,000 goal, we’ll combined our cash with the help of the Robbie Foundation and hopefully purchase a stander. Fingers crossed. I promise to keep you all posted!
For those who need more of a visual of what a stander looks like, here’s Lila today! She’s home because it’s a snow day. If we didn’t have a stander, she would’ve been sitting in her wheel chair ALL day long. Our current make shift stander, was actually found in a “dumpster dive” in another state!!! People were actually going to throw this out?! ahhh! She’s quickly outgrowing it. I bet we have half a year left.
A big thank you to everyone that donates and/or passes our fundraising page on social media! Means the absolutely world to us! xox Sierra