The end of 2021 and my First Full Year in Tennessee

2021 is coming to an end and I will be honest as far as Liam and his learning it has been the most productive year yet! But I will be honest Financially now we have therapy but it is honestly the hardest year ever for bills and making sure he will get to continue Therapy! We have been denied for Social security this year because of our items paid for ... WE have been told if we were divorced and sold things that were paid for or took out a loan he would qualify for the beneifts he automatically qualifies for when he is 18 and is an adult. I am telling you the system does not work for people that honestly need it or work for a living or that do things the RIGHT WAY. They basically will only help you if you are completely dependent on the government. Chris and I both work hard. I am not working full time but it feels like it. I am 25-30 hours with State Farm ... I still help with Back office HR/Payroll / and some septic applications and customer service for Cen-Tex which I am glad I miss my Cen-Tex Family a lot. But I work probably 40 hours or more on my 3-5 x a week arguement with the Insurance on what they preapproved. WE are on our 4th appeal on why they should pay for our services. Not to mention we have met our out of pocket deductible that is extremely high... I have preapprovals for services prior to going i send in the preapprovals with our denials plus the 27 proof of additional insurance b/c online, 2 phone calls and the first form wasn't enough I had to send in 27 with each and every bill that was denied to prove who was 1st and who was second. We went to Napa this year twice once for a week with Shay for speech 2 x a day ... it was GREAT he had some new sounds from that week.... WE went back in September for 3 weeks we did DMI, (Dynamic movement) and Neuro suit, OT/PT and Speech.. he came home saying High, Low, and could explain the difference. He now says EAAAA and the T does come but it is delayed but we can now get him to tell us EAT.... WE had a scare in therapy and had to see a neurologist in October when we got home we had to also have an EEG and CAT scan.. Scary stuff for the little guy but was a champ.. CAT scan he was crying and a little freaked he has never been taken away from me like that and was a little confused on why I wasn't going with him. But he did well and the results pretty much didn't tell us anything about seizures but just same things other Kleefstra kids have... (lots of medical terms) but nothing really new... They want to do a sleep study and so we are waiting for that appointment and to be honest I just need to call the employee line and try to get in was hoping for this year while deductible was met but well we shall see since it is Dec 18th... Joy and walker and Daisy have been with us so it has been very busy and different in our little home ... hard with all of Liam appt and having a 2 year old . With Covid can't take her to therapy and or the hospital doesn't allow siblings or other family members. Hoping they can get child care assistance to help them especially for days i have appointments.. Right now Chris has been working all night drives to meet me at appointments and one of us will bring her home while the other one will stay with Liam for therapy. they don't allow other kids in b/c of Covid plus it is hard to have siblings or others b/c they want to play and it isn't fair to the other kids who need the space and play area for therapy. Being new in an area does have its ups and downs. you don't have the people to help with things like that and it gets lonely when you need to talk to someone or just escape your everyday and sit with a friend. Chris likes that we can go to the store and I can get what i went in for and get out without spending an hour plus talking but I honestly miss having people I know in the store or seeing someone anyone I might know.. making friends in a pandemic or when you get older is just hard.
Anyway... So this year... Liam has learned Hi, Low, he can say Liam, ma, da, EAAA he has sssss sound of a snake, bear sounds, owl, dog sounds , he can make just about all animals sounds especially a horse, he finally just this month has learned how to use a fork and actually pick up food and put on the fork and put in mouth... yay!! potty training went backwards guess b/c household routine being very different not sure. The structure he once had is very very very different. He is playing with toys more than looking or wanting his device. He is cutting better in therapy, slowly doing better with his hands and his little crayon stylus from Napa we downloaded a program he has been working on his letters with a crayon stylus and doing well. He loves to learn and has really been trying. Except at home. Not sure if the routine disruption or the clutter that keeps taking over any and all space that i once had is the issue. He just honestly doesn't want to do anything at home. I can get him to do the music therapy and working with letters on the ipad. He just doesn't want to do anything in our typical routine anymore. it is like he is just a different person lately. He seems aggravated and not being able to talk he has been pushing some mainly in the evenings when he is tired or frusterated. I don't have the issue during the day so I have no clue where that is coming from either.

He loves the moon still wants to see it everynight . He can see planes and helicopters that I can't see in the sky. This year he had to get glasses and it saddens me that we didn't get them sooner since he is a +7 poor kid. (another thing insurance did not pay for $600 for each pair he had to get two different ones) One was cutting into his ears. They don't take them back you have go to buy again!) He is very adamit about wearing his bracelet when we are not in the house and acts like he understands the importance more than he used to. Liam loves loves loves SANTA / Father Christmas ... he is in Love!!! I am telling you to hear his giggle honestly is the only reason I can get up and keep pushing everyday... We have lost a cousin to heart attack, Aunt to heart/stroke situation.... and This last month our Aunt and uncle were killed and don't know who yet or why still under investigation .. Then we have lost 5 of our Kleefstra family; the hard thing is our children are rare and there are not a lot of us so we all sort of know each other but all feel a connection of some sort. The hard part for us is not knowing what to expect, the why we lose our kids and what we can do to prevent. I have heard and been told a lot of our kiddos pass from Suds which is super scary. I worried for his first year of life prior to diagnosis worrying of SIDS now I have to worry about the same thing but for the rest of his life!!! GEEZ so between fighting insurance, mounding bills, other financial situations and worries coming with expectation of more bills, Schooling ... Student loans, and just trying to survive with Chris working in the medical field / covid stuff, schooling... Lucky I work from home that helps a lot so if we don't have to go to therapy we typically rarely leave the house. Keep praying for us.... WE love our new enviroment, we love no CEDAR,, we love we finally have resources for liam to get some help and have a chance ... WE just need our insurance to pay. WE need to have the means to pay for him to have some sort of chance to survive in this life and be able to at least ask for what he truly needs, to tell us he is hurt, or someone hurt him, to tell us he is hungry, to learn to use the bathroom , to learn to eat without us., to say when someone is upsetting or he would like something different to happen without the frusteration and acting out some. AND To be able to just live!!! To be able to do this our insurance has to pay.. Chris and i took a massive pay cut to move here and be able to get him help. IT sickens me that so many people don't want to work, don't want to do anything b/c of government hand outs but we can't even get the disability he is entitled to. I did get some good news that we were approved for Katie Beckett still waiting for the other info to be able to use it in the future won't pay or help with past stuff but will help us with his glasses and for therapies that insurance might not cover.. helps us pay someone to help us in house if we need it. all needs to be medically necessary but in TEnnessee we have GREAT doctors!! therapist and just what we need for him just need everything else to work out... WE were working with my Aunt for the 2022 shirt... well since she has left us and the equipment to make the 2022 shirts was burned down we are back to square one on our 2022 shirt fundraiser. My Aunt did send me links but honestly I can't afford to buy the equipment with some unexpected expenses we didn't prepare for that popped up in the last two weeks... Tornadoes, Attorney's and LIFE RIGHT... So my first full year here (a little travel but not like 2020) You can see I am still not really settled!!!!! Still don't have my kitchen unpacked but Chris does do the best he can to continue to do improvements as we can.. WE had to replace our garage door it seriously broke and almost squished me ... I was alone... had to get a new door to the basement b/c the old one was in terrible shape and getting worse by the day and storms... Seems like everytime we turn around this house is telling us it hates us. lucky for the home warranty but it doesn't pay 100% .. AC was brand new had to replace the compressor our warranty covered $550 but we had to pay the other $500. better than nothing right.. have some electrical stuff that is $1100. The taxes here are cheaper than TEXAS so that is a plus.. utilities are cheaper , car insurance is cheaper. Chris went to dentist and didn't give secondary insurance so they just charged our card for $900 yay for us another 900 we didn't have to spend and our secondary would have paid for .. Called she said she would file but she never return my calls and insurance again refuses to pay without them filing it so we lost another $1000 basically for something that could have been prevented but since I don't have any way to fight b/c everyone ignores me or wont return my calls b/c it takes them 15 min to do something!!! I am so over it all... Weird it all adds up All the medical and we still have to pay Taxes at the end of the year. STUPID but so far the stimulas checks I just save to deposit to give back to the IRS and then the difference in our amount we will owe. I wish i understood the itemizing and how to make all of these stupid bills work for us and not against us .. Pray for a miracle for insurance to do its part. Sometimes I believe that if we took the money held out of our check every month i could have paid all this stuff and been a lot less stressed out!! lol ... I really just want liam to have help and I feel like the insurance makes us feel like if they make it impossible we will give up and just stop taking him ... that is not fair to liam and not why we pay for insurance . WE didn't ask for Liam to need these things we don't do anything unnecessary but for his first 2 1/2 years of diagnosis there wasnt one place that would take us or help liam. now we have help and we are asking you to pay for what he should have been getting for 3 years now and we are playing catch up. They said he has met his quota for therapy for this year but when I call they said we just needed an RX so i sent them 3 RX for each of the intensives b/c they are required to even go to intensive ..But with RX, with preapproval NADA... just fighting , the last appeal was over 600 pages cost me $20 to mail it certified. So as of today December 18th we have over $88,000 worth of bills billed out. and the insurance has only paid $18,000 leaving us after the write off amount still owing over $35K and that is what is due after what has already been paid this year... And still over 30 plus days and no response just more denials to our appeals more denials same dates of service and different denial for same thing! Cordination of benefits is another thing i have to literally send them every 3 weeks who is responsible .. i send online, print and all and they call my providers and I send all proof of where i sent and they send and still they harrass and make it as impossible as they Can.. with hope one day someone will run across this and help us but i know it is doubtful and this is just going to be my life alone fighting alone for what LIAM DESERVES!
His AAC Device was over $8000, thankfully Katie Beckett will pay for us a Stroller so hoping to get that soon... Was told they would help me with Diapers as well. Worry we will meet that limit pretty quickly but glad to have a little something that will definetly help ... So still trying to stay positive. GRATEFUL for Therapy, Therapist that love Liam, Liams Laughter, that we still have a home after the storms, for Father Christmas.. (he honestly made liams Saturday) YOu have no clue how much this child loves him! he definitly brought cheer to us! his job is done this christmas.. I am thankful for our jobs that we have them and are able to work, for our health... For our families, and our friends. I don't have a lot of friends here but I am so grateful for my neighbor Mande and Mike and my friend Catherine and my neighbor Mark and Susan ... I might not get to see them but they snap me and encourage and help me feel not so alone thru all of this. I am thankful for so much I am trying to see all the GREAT things and milestones reached and not concentrate on all the things I can't control !! But the things you can't control are the very thing that wakes me at all hours of the night! So there you have it my 2021 in a quick crazy 5 min read!!! Sometimes I wish the year could have felt like 5 minutes but then i stop b/c I don't want my time with liam to go that fast!! the unknown of the time I have with him make me realize i need to do all I can with him. Some things I would have never done I do it b/c I know it will make him laugh, smile or have a GREAT day! making his life the best it can be is my life now! I might not have the means to give him what he needs all the time but I will give him all i can regardless !! he deserves the best life he can have !

This year... the people who have touched us and have blessed our little with experiences we will never forget...

  1. Shay McMinn
  2. Wendy
  3. Kaitlyn
  4. Racheal
  5. Kelsey
  6. Sarah
  7. Chandellor
  8. Nikki
  9. Alice (Grandma for Galileo)
  13. MANDE
  16. SHELBY
  17. HILARY
  18. EMILY S.
  30. DR. EDISON
  32. Sheri/Kevin & Shane and Allison
  33. Chris Grandpa


Love to all.... :Michelle