Hope you all had some great holidays! We hit the local news again - this time with an update. Some of you have already seen this on Facebook, so this update is for those of you who haven't seen it. :) http://www.kaaltv.com/article/stories/S3658998.shtml?cat=10151
We still have not received the final bill for Kaiden's speech device. I called PRC for an update last week - the claim has been submitted to BCBS twice, and BCBS now has until Jan 16th to respond. Next up finding out why BCBS is dragging their feet when we went to all the trouble of escalating the case, getting it reviewed, getting approval, getting the waiver to have PRC treated as an in-network provider.
UPDATE: We still have no idea how much more we owe on this speech device - no word from BCBS on what they're paying - but, on the upside, no bill yet from PRC. LOL, it will come. As of our last update, Kaiden was stringing 5 - 6 single words together to make a sentence on the single-touch portion of the program. Just over 2 weeks ago, we had a meeting with a rep from PRC to learn more about how to use the device. After hearing how well Kaiden was doing, she suggested we give him access to the full 3000 word program rather than single touch, and skip over the transition stage, too. This means the initial button touches now bring up secondary screens (or more) for more word options. To say "I want to eat" is now 7 touches instead of 4. Kaiden was a bit overwhelmed at first, but tonight was able to say "I want to eat" the new way with only 1 mistake! Slow but sure progress!
We're up to 5 - 6 words strung together, and now sometimes he brings the speech device to me to "talk" rather than just using it in the space we've designated for it. All good progress!!
we're up to 4 words strung together!!!!
want play music more!
oh he's SO got this!! Kaiden asked me to put his shoes on (ok great) then RAN to the speech device (because I guess you need shoes to run?? LOL) and wanted me to turn it on (like a computer the unit goes to "sleep" when not actively in use) and quickly punched in 3 words. "want" "eat" "more". :-)
Kaiden's speech device is HERE!! Just arrived! With all of your help, we were able to make the $5000 downpayment - now just awaiting the final bill after insurance pays their portion. Kaiden will start in-school therapy with this device TOMORROW!!! It will still take months of training for him to fully learn the program , but as quick as he picked it up when he had access to a loaner unit for several speech therapy sessions last spring, we have high hopes of him finally being able to communicate fully! I'll continue to keep you updated as things progress!!
$5000.00 down payment made today! We could not have done it without all of you!! Thank you, thank you, THANK YOU!!!
We think we finally have things worked out! We're making a down payment of $5000.00 as soon as the funds from here transfer to the bank. PRC will ship Kaiden's unit when they receive the down payment, and bill us the remainder due (the rest of our deductible) after BCBS makes their payment, plus any extra if BCBS doesn't cover the full amount above deductible. FINALLY!!! Can't wait to get him using a speech device again!! :)
Okay, so here's where we're at: Just got off the phone with insurance . . . the manufacturer of the speech device has now been determined to be an out-of-network provider (would have been nice to know that several months ago!!). After going thru Kaiden's story yet again, insurance will now review Kaiden's case & our insurance policy, and attempt to push thru a waiver where they will pay an out-of-network provider as if they were an in-network provider - however that would only be up to "the allowed amount" . . . and no one can tell us how much that "allowed amount" is. If the waiver does not go thru, insurance will only be covering 40% after deductible so we'll need to do some additional fundraising. Our deductible is $5450.00 - and we've raised a bit past that so far but may need to go further!! THANK YOU EVERYONE!!! and please don't forget about us! :)
I wish I had more of an update for y'all!! So far all we know is that paperwork has been submitted, the unit has been ordered, the manufacturer called the speech therapist who gave him the official diagnosis (not his regular ST) to ask what color of unit we wanted . . . and now another letter from insurance today stating that it SHOULD be covered but they cannot guarantee it. I really hope this doesn't take much longer. :(
GREAT NEWS!!!!! The insurance company is going to cover past our deductible! I will still wait until the final bill comes in before closing the fundraiser, in the event they only cover the unit itself and not the keyguard. I gave Kaiden's doctor's office the official go-ahead TODAY to order the unit!! I don't think there are enough words to express our thanks and gratitude to all who contributed to Kaiden. We are beyond blessed that so many people want Kaiden to succeed as much as we do! LOVE YOU ALL!!!
We're getting down to the wire - last day of morning preschool is Thursday!! We should still have two sessions of speech therapy left with the device - Thurs and Fri. After Friday we're on our own! And after SIX MONTHS of trying to work with the insurance company, today they finally tell me it's the code for the speech device itself, not the diagnosis of speech apraxia, that they needed all along. So frustrating that it's been a miscommunication for six entire months!!!!!!! But, the new code has been found and faxed off. And now we wait . . .
I am SO PROUD of Kaiden!!! He's using the LAMP (loaner) unit independently, stringing 2 words together to say what HE wants to say! :) Donations are still needed, if you can help! :)
We're almost 70% there!! How awesome is that?!?!?!? Submitted to insurance for the FOURTH time now (at their request) . . . we've hit our deductible amount now with this fundraiser so HOPING insurance will cover the rest! If not, LOL, I'll be asking for a little more help! :)
Just a little over $2500 left to raise! We're getting close!! THANK YOU EVERYONE!!
We made it to 65%!! Help is still needed! :)
We now have a benefit fund set up with Wells Fargo here in Albert Lea, if anyone prefers to donate that way! It's titled "Help Kaiden Talk". :)
Still pluggin' away here! :) Called the insurance company this morning for the FOURTH time, trying to get a portion of the speech device covered . . . been trying that route since December! We'll see what today brings. I'm guessing our best case scenario is they may cover a portion after deductible is met . . . but we're still a bit away from raising that amount. Any and all help is greatly appreciated!!
Today is Autism Awareness Day ~ Kaiden has an educational diagnosis of autism along with his other struggles. We're over half way to our goal, but still have a good way to go! Please help, or share if you can! :)
We're almost to $5000.00!! THANK YOU everyone!! If you know someone who'd like to donate but would rather send a check, please contact me on Facebook for details! :)
We're doing great!! almost to 60%!! Our goal is to have the speech device by the time school lets out for the year. We have the loaner unit at the school now! Kaiden had a much easier time once the keyguard was installed to the unit. We will definitely have to get one of those!
Thank you, thank you, thank you everyone for all your donations so far!! We're a little over half way there!! :)
Just got word the loaner unit thru the school system (for school use only) is on its way!!
We are so close to 50% of our goal! Thank you EVEYRONE for all your donations so far!!
Just a quick update - I updated the link for this fundraiser to http://www.gofundme.com/HelpKaidenTalk
- the old link will still work great, just thought this one might be better for those searching to find it! :)
Everyone has been SO generous - THANK YOU, THANK YOU, THANK YOU!!! We are almost at 45% of our goal!! Thank you also for the comments on our page - I wish I could reply to them, however there is no option on GoFundMe to do that, so please know I've read them!! :)
THANK YOU EVERYONE!! You all have been so generous!!
Please know that as much as I want to, this site does not have the functionality to reply to comments on this page, aside from posting updates. You can always send messages on Facebook! It might go to my "other" folder but I'll be checking it! :)
Look for us tonight on either the 5 or 6 o'clock news at KAALtv ABC 6 News!
KAAL TV 6 coming for an interview today about Kaiden and the fundraiser!! :)
Hi there everyone! Thank you ALL for your generosity!!
Just wanted to clarify why we are trying to raise funds for one of these particular devices. Between ourselves and Kaiden's team, we have made this decision based on Kaiden's long-term needs. These particular devices were created not only for those with speech apraxia, but motor (limb) apraxia as well. We do know that apps for the iPad are available, however when working with a young child who may never verbally speak, this device must last him for many, many years. These devices are more durable than an iPad and come with more support. We have used both an iPad and one of these units in his speech therapy sessions and have quickly realized the advantages of the unit over the iPad. The iPads are unable to adjust the sensitivity of the touchscreen and are far too sensitive for Kaiden's level of touch; whereas these speech devices have several levels of touchscreen sensitivity. We have tried several other communication systems and this is the one Kaiden responded to the most. He gets excited to work with a unit during his therapy sessions! We can't wait for the next loaner unit to arrive! :)
The Albert Lea Trib article should be out on Sunday!! Today was our first speech therapy session WITHOUT having the speech device on hand (until the new loaner unit comes in). He was not impressed with us, LOL!!!
YAY!!!! The school is getting an Accent 1200 on loan for 30 days, with the possibility of re-loaning for another 30 days! Hoping it arrives SOON!!
Should be able to find out tomorrow when the article for this fundraiser comes out in the Albert Lea Tribune. I know we have more (offline) donations on the way - THANK YOU to everyone!!!
Meeting with the school district today went well! They will be getting another unit on loan for at least 30 days, hopefully longer!
A big huge THANK YOU to everyone for their donations!! We still have a long way to go! :)
An article will be coming out in our local Albert Lea Tribune about this fundraiser!! Will post the link as soon as I have it; not sure what day it will come out. THANK YOU to everyone!! We're off to a great start but still have a long way to go! :)
This video of Kaiden at 7 months old is for those wondering what Infantile Spasms (benign myoclonic seizures) look like; in it he is having a cluster (many spasms together in a short time).
While the seizures took his speech, I am very thankful for them because I learned SO much about nutrition, what foods triggered his seizures, stopped them, and thereby awoke his sensory processing abilities which allowed him to blossom into the amazing kid he is.
Also - the loaner unit Kaiden was working with was shipped back this morning!!!!! :( Let's pray he's not without one for long!
We have a meeting scheduled with the Albert Lea Tribune for Wednesday 2/19 to do an article about the fundraiser! We are off to a GREAT start!! Thank you so much everyone!!
Now that Kaiden is trying harder than ever to communicate, it's fun to see the new things he asks. Today he led me over to Nick's electric guitar and then got mad when I didn't play it. (I don't know how). I played piano for him instead and that pacified him for a little bit. :)
Kaiden is one really cool, smart little 5 yr old! He lost his speech due to Infantile Spasms, which he had from approx 7 mo to 16 mo of age. His first (and last) word with intention, was "Mama", said 3 times over 2 days at 11 mo old -December 17 & 18th, 2009, the best Christmas present a Mom could get! Since then, it's been 4 years. He's occasionally talked in his sleep, but nothing while conscious. The diagnosis: Down Syndrome, an educational diagnosis of autism, and (what impedes him most) speech and motor (limb) apraxia. Having speech and motor apraxia means that he is unable to talk or sign. He wants to, but his body isn't letting him. In the meantime, he invented his own nonverbal physical language. It's taken us a lot longer to understand it than it took him to invent it! Recently Kaiden's begun working with the LAMP (Language Acquisition through Motor Planning) system on a Vantage Lite loaner unit. He's picking it up a lot faster than expected, which is fantastic and tells us we are on the right path for communication with him. Unfortunately, loan time is up and the unit needs to go be loaned out to other families. We are hoping to purchase a unit from PRC https://store.prentrom.com/
and they are NOT cheap! :( We are asking for help raising money for the mid-range price of units and accessories; with Kaiden's low fine motor skills, he will need a TouchGuide too.
Please know that we have researched a lot to find Kaiden the device that works for him. Many of our supporters have suggested using an iPad with an app instead as it is a much cheaper option. Unfortunately, the iPad is not built for those with Kaiden's specific motor apraxia issues and is not a viable option at this stage.
All help is greatly appreciated!! Kaiden shows us every day he has things to say, and we can't wait to hear them! :)
Updated: we are hoping to work with some organizations that help with funding, as we don't qualify for MA and would have a very sizable copay with TEFRA. Any excess funding will be used for Kaiden's additional needs: The yard will be fenced in this spring; Kaiden is a "runner" - the county is helping us with partial funding for that project. :) At this time, although we would like to, we cannot afford extra therapy services outside what the school system provides for free. Kaiden is also on a range of dietary supplements that he will need for life.
Here's a link to our article in the Albert Lea Tribune about the fundraiser! http://www.albertleatribune.com/2014/03/technology-aids-in-teaching-disabled-boy-to-learn-words/
Here's a link to our feature on the KAALtv ABC 6 News! http://www.kaaltv.com/article/stories/S3353990.shtml?cat=10151