“Shhhhhhhh……. no one needs to see you……. you shouldn’t be here”

Recently, it feels like this is being said to those of us in the disabled community. Don’t get me wrong, it’s subtle and those outside of our community probably don’t hear it. But we hear it, and we are afraid for our loved ones, our families, and/or ourselves. What do I think is the driving force? Well, there are a few uncomfortable truths:

1: People with Disabilities Make other People Uncomfortable

“NO”, you say. But there is no way to deny it. It’s in the way people glance to the side at a child in a wheel chair. It’s a confused look by an adult clutching their favorite Elmo stuffy. It’s the dirty look at the person vocalizing and “not using their words”. It’s cutting off the child using the walker on the sidewalk, or making the joke “they are too young to have hip problems”. (Yes, that last one actually happened to me in my neighborhood while Lyra was learning to use hers.)

2: People with Disabilities are “inconvenient”… or that’s how it feels

If the looks and the comments aren’t enough to keep you home. The facilities sure make sure you know that you are “inconvenient”. We take Lyra out all of the time, and let me tell you, even modern buildings make it clear that the world doesn’t want to see people like her. At the Children’s Museum in Denver, there is 1 elevator. This is place were people bring small children with strollers, not to mention kids while mobility needs. The elevator entrance, on both floors, is a choke point. Getting in and out is a nightmare, let alone visiting multiple parts of the museum. Oh, and when the elevator broke, the museum simply sent out an email saying “leave your strollers at home.” There was no acknowledgment of a whole community of people who simply wouldn’t be able to access a whole floor. While the Denver Zoo now has a single good bathroom (yes, 1) to change Lyra’s diaper, a few years ago when I went to guest services to ask where I could change her that wasn’t a floor, they had no idea. GUEST SERVICES had no answers. Oh, and don’t get me started on how uninviting Disneyland and Disney World were. Having bus drivers roll their eyes at the inconvenience of a child in a wheel chair was really fun.

3: Statements, and Policies, by Government Officials and Government Departments make it clear they want us to go away. And new rules are shrinking our world.

Yes, I am going to being political. Yes, I am going to call out specific people. Just people something makes you uncomfortable, doesn’t mean you can avoid it. To be clear, I do not blame the current political climate all on Trump. Some policy changes started way before he became a political leader. However, he is good at saying the quiet part out loud, and he is the current head of country. So, his words and attitudes matter.

We know about the cuts to Medicaid, and I have spoken about that before. I will not shut up about it. However, first I want to talk about a policy called EVV or Electronic Visit Verification which is part of the 21st Century Cures Act (Dec. 2016). Bills take a long time to write and pass, so obviously this is pre-Trump. You can read the policy starting on page 243, but I want to focus on it’s intention and it’s real life impact. Basically, the law requires that anyone (other than a live in caregiver like me) who provides in-home care for someone must login and verify their location using an electronic device, like a cell phone, when providing care. It also means that you can leave the home while proving that care. This is to help prevent people from fraudulently claiming they with the patient when they are not. In theory, I get it. But let me show you what the reality is: My respite provider (B) just knocked on my door, while I am typing this, to ask about other things Lyra might like to do. Lyra is bored. There is a park 3 blocks away that Lyra loves to go to, but B can’t take her there because it’s against EVV rules. B can’t take Lyra swimming at my Dad’s house, or to the local recreation center. She can’t even go for a walk around the block. The only paid caregiver that can take Lyra anywhere is me. It makes her world so small.

Okay. Now on to Trumps own words… “allegedly”. According to Trump’s nephew, there are 2 statements Trump made. I was about people with disabilities in general, and another was about his nephew’s son (Trump’s great nephew) specifically. According to his New York Time’s article, Fred C. Trump III stated that during a meeting with himself and other adcocates, in January 2020 our president stated “Those people . . . ” Donald said, trailing off. “The shape they’re in, all the expenses, maybe those kinds of people should just die.”

“Those people” are people like Lyra.

In another conversation about Fred’s son, Fred reports Trump as saying, “I don’t know,” [Trump] finally said, letting out a sigh. “He doesn’t recognize you. Maybe you should just let him die and move down to Florida.” – Of course, Trump denies making these statements, but I personally don’t believe him. He’s denied a lot of things that have turned out to be true. Also, this attitude doesn’t surprise me. Just look at the estimated $700 billion- $1 trillion federal cuts to Medicaid spending slated for the next decade. The “One Big Beautiful Bill Act” can kiss my ass.

If you want to know how detrimental it is prodicted to be for people like Lyra, and families like mine, here are some articles you can read:

• “By the Numbers: Harmful Republican Megabill Will Take Health Coverage Away From Millions of People and Raise Families’ Costs”, Center on Budget and Policy Priorities
• “State-Level Impacts of Key Medicaid Provisions in the One Big Beautiful Bill Act”, Rand, June 18, 2026.
• “How Medicaid Cuts Hurt People with Disabilities“, Disability Law Center (Utah), 2025
• “Why Medicaid Is Important for Children and Youth With Disabilities”, Children’s Hospital of Philadelphia, April 2025
• “5 Key Facts About Children with Special Health Care Needs and Medicaid”, KFF, April 2025
  • 1. Medicaid is a major source of coverage for children with special health care needs.
  • 2. The share of children with special health care needs covered by Medicaid varies by state.
  • 3. Children with special health care needs covered by Medicaid have greater health care needs compared with private insurance.
  • 4. EPSDT helps children with special health care needs meet their health care needs and protects them from high out-of-pocket costs.
  • 5. Medicaid coverage can facilitate access to care for children with special health care needs in school.

All of those are academic. But what does it look on the human side? It means financial ruin for families. Mark and I drained all of our savings and had to ask family for financial help before Lyra qualified for Medicaid. Not only were we drowning in medical bills, but we lost about 40% of our household income because I had to leave my job to care for her. Being her paid caregiver has given us financial stability. However, due to the recent Medicaid cuts, we are losing about 1/3 of the income I normally bring in. This isn’t because I am doing any less taking care of Lyra, or her needs have changed. She qualifies for the same number of hours of care, and the same programs, but access to those hours and programs has become significantly more restricted. While we are staying afloat by tightening our belts and cutting back where we can, many families like ours are already living on the edge. They don’t have places in their budget where they can cut back. Add in the rising fuel, energy, and food prices…. it’s a lot.

The last thing that scares me is the recent Justice Department memo regarding enforcement of the American’s with Disabilities Act and the Olmstead decision. Basically the Olmstead decision was the Supreme Court “that people with disabilities had to be served in the most integrated setting whenever possible”. (PBS)

This meant that they belonged in public schools, and schools had to meet their needs. Public buildings had to provide reasonable access (although I think “reasonable” is sometimes questionable). It also means that people with disabilities can’t be forced into institutions. That they belong in communities. The recent Justice Department memo says that Olmstead simply “isn’t enforceable”.

What are the implications of this? Well, I think it’s best stated by Maria Town in a recent interview on PBS:

Yes, I am fighting another denial from Anthem Blue Cross Blue Shield. Yes, it is for the same procedure that I was battling to have done in 2025 (a single botox shot in her pyloric muscle). After my post on Facebook on September 29, 2025, we finally got approval for Lyra’s procedure. She had it in October and we saw a marked reduction in her spitting up, and a general improvement in her quality of life. I didn’t post about her receiving the procedure because there were still some potential legal things going on in the background. I had to wait until those were resolved to tell the whole story of the nightmare that Anthem, and their contracted pharmacy benefit manager CarelonRx, put me through to get standard care for my 10 year old child. By the time the legal portion was wrapped up, I was emotionally drained and onto the next crisis to manage. So, I put off writing this a little longer.

Then the spitting up started to creep back in.

Lyra’s doctor had told me there was a good chance she would need this procedure more that once to see the full benefit. According to him, Botox has a half life of 4 months. So, it’s common for patients to need another shot around the 6 month mark. The studies that I have read, and passed along to Anthem, say the same thing. Lyra had Botox shots on another portion of her GI tract when she was younger, and it took more than 1 procedure to a sustained improvement. We had different insurance then, and that insurance company didn’t delay her care. So, her doctor submitted to have the procedure performed again.

After a 9 month battle in 2025 to get a single Botox shot approved, Anthem has denied it again. Again Anthem, through CarelonRx is claiming that it isn’t “medically necessary” given her diagnosis. So, I submitted an appeal with all of her records and a number of additional documents. The first 2 documents I attached in that appeal were the approval letters from the last time we had this procedure done. The most important document was from the 3rd party review, which is your last hope when going through the appeals process. In this document, the reviewing doctor (who was the only pediatric GI doctor to review her case on the insurance side) stated:

• “the requested service is appropriate and medically necessary based on the current literature and extenuating circumstances found in this case.”
• “There are no FDA approved therapies for gastroparesis. The current standard of care is to use promotility agents… If medications fail, the use of Botox injections to the pyloric sphincter is an acceptable next step.” – Gastroparesis is where your stomach is slow to empty. It is often painful and causes nausea and vomiting. This is one of the GI conditions Lyra has. We have tried every medication recommended to treat it, and she is currently on 8 medications to manage her GI symptoms.
• “This member has a complex condition and has already tried and failed medical therapy with many agents. Therefore, Botox injection [to] the pyloric sphincter is appropriate in this case and medically necessary.”

You would think, that after submitting this document, from Anthem, along with documentation of how the first procedure provided noted benefits, the lack of complications experienced during/after the first procedure, and all of the records and medical literature provided the first time, that Anthem and CarelonRX might realize their mistake.

Nope. Again, they are denying and delaying medically necessary care.

I highly doubt they even read the documents. Why to I believe that? Because I have evidence of them disregarding the information the first time in 2025. This is the story that I didn’t tell before.

In February 2025 Lyra’s motility specialist doctor (we will call him Dr. BG) and I decided that it was time for the next steps to help manage her spitting her. Dr. BG is one of two GI specialists that Lyra sees at Children’s Hospital of Colorado because her GI system has been so complicated. I am beyond grateful for the level of care that Dr. BG and Dr. K provide Lyra.

In April 2025 I started to get denial letters from Anthem regarding the Botox. It’s not the first time I have received a denial letter, and normally the hospital is able to get everything resolved quickly. However, this time I noticed it wasn’t getting resolved. So, I started calling Anthem. I worked as an adjudicator for a pharmacy after college, so I have some experience calling insurance companies to get information that I am legally entitled to. This was when I knew that things were going to be very different from other denials I had received.

Following the directions on the denial letters from Anthem, I called the numbers on the back of my insurance card. I was consistently told that I had called the wrong department and transferred, only to be told that wasn’t the right department either or that they couldn’t find her case. I was requesting documentation from Anthem regarding how they came to the conclusion that the Botox was not medically necessary. These are documents that every patient is legally entitled to. The denial letters from Anthem even state:

“Can I get copies of documents for my records? Of course! You, or your authorized representative can call Member Service or send us a letter to ask for free copies of all documents including the actual benefit provision, guidelines, protocol, or other similar criterion on which this decision was based. You can also ask us for reasonable access to and copies of all documents, records, communications and other information and evidence relied upon to make this decision.”

It was that last part that I wanted. I especially wanted the notes from the doctor at Anthem who had done a peer-to-peer review (phone conversation) with Dr. BG. Again and again I would call Anthem and request these documents. Again and again I would be told that they could not do that, even when I read the policy to them directly from Anthem’s own documentation. At one point, I was even told that those documents simply do not exist in her file. Not only do I have dates, times, and names for these phone calls, but I have recordings. Anthem should have recordings as well, but I wanted to make sure I have my own just in case theirs end up in the same place as the documents I was requesting.

At this point Mark and I hired a lawyer. We figured we would have to take Anthem to court to get this approved. Upon hiring the lawyer we learned that due to how certain laws are written, lawyers fees could not be included in the lawsuit. We would have to pay for his time out of pocket. However, our lawyer was confident that it was unlikely we would need to go to court. According to him, these situations are often resolved with a letter and a threat of legal action. Luckily with my background in research, I was able to do a lot of legwork finding medical literature to support our case. I also obtained all of Lyra’s medical records regarding her hospital stays and every encounter (appointments/phone calls/emails) that I have had with the GI department at Children’s regarding Lyra. It is close to 10,000 pages. I went through them to mark the information to support our case. I noted where we had tried different medications, the dietary changes we had made, the tests that had been run, and noted the patterns in her symptoms.

It was hours upon hours of my time. Not only that, but I had to sit an read about some of the most traumatic experiences of my life. And I relived them. While reading I lit candles because I could smell the emergency department. I could hear the beeps from her monitors. I could feel the fear, helplessness, and stress in my body. To be honest, writing those 6 sentences caused a flash back. Yes, I have PTSD.

In May 2025 the letter was sent from our lawyer with all the fancy legal stuff, and a flash drive of documents (because her records are just too much to print out). The only thing our letter didn’t address what the “documents, records, communications and other information and evidence relied upon” by doctors at Anthem to make their decision. Why? Because I still didn’t have them. Then, we waited… and waited… and waited. Finally Anthem responded! Just to say that they needed me to fill out paperwork so that they could respond to the lawyer. I filled this out while on vacation in Hawaii.

And Anthem still said that the Botox shot was not “medically necessary” for Lyra.

I regrouped. Tried to figure out my next step. I felt lost. Then we got a letter from Anthem saying that we had exhausted all of our options for internal reviews. Our only option was to do an external review. At this point it was August 2025. I had been working on getting Lyra this procedure since February. Anthem has continued to delay my 10 year old CHILD care. So, I requested an external review.

We were informed that a company called Christopher Place Healthcare Review would be the company looking into Lyra’s case. Of course, Anthem got to pick the company. I did some research into the company and I honestly wasn’t very hopeful. From the little I could find online, it looked like they normally sided with the insurance company. To say I felt hopeless is an understatement.

In late September 2025 we still didn’t have a response. As we frequently do, we went to have dinner at my sister’s house. Lyra has a special bond with her aunt and uncle, and they always make sure to work around what she needs. At dinner she started spitting up escalated, as happened almost every night. My family wasn’t phased or grossed out, they know it’s just her. But I was angry. Not at her, but at the cards she had been dealt. I did what I typically do, and took a video to send to Dr. BG for the purpose of documentation.

On September 29, 2025, I was watching my son at swim practice and cutting up that video to send it to Dr. BG. I had to cut it up because the file size was too large. As I watched and rewatched the video, I was no longer simply angry. I was filled with rage. How was it okay for Anthem to force a child to live like this when there was a well documented treatment? Anthem couldn’t even give me a solid argument for it because they have never sent me the documents I had repeatedly requested. So, not expecting any kind of response I made my post on Facebook calling Anthem out and tagging them:

Hey Anthem Blue Cross and Blue Shield: you keep saying it’s “not medically necessary” for my 10 year old to get a single Botox shot that her pediatric motility specialist at a well respected Children’s Hospital recommends. You won’t even suggest other possible treatments because WE HAVE TRIED EVERYTHING ELSE. You won’t give me the documents I have requested repeatedly. You won’t look at the research from other well respected children’s hospitals showing that this treatment is effective. I want you to watch this video and tell me how it’s okay to let my 10 YEAR OLD live like this, when she can be helped by 1 SHOT. Are you proud of yourself for the money you saved? Yes, I have filed appeals. I have been jumping through all of your hoops. While I perform like a clown in your circus, I want you to see how your decisions impact CHILDREN.

Suddenly I got a phone call from a representative from Anthem’s parent company (I missed it because I was picking up the kiddos at school). Then I got an email from them as well. We set up a meeting and I went into detail about I had been illegally denied the documentation regarding Lyra’s case. I told her how one representative even told me those documents weren’t even in her file. That they didn’t exist. While I told her that I could provide names, dates and times, I held back that I had actual recordings. But I’m not holding anything back now. I explained all of the documentation that I had sent to Anthem, and how her case being reviewed by an ER doctor and a Neonatologist was not appropriate when evaluating an extremely complex GI problem in a 10 year old. I spoke about how Anthem was causing a child to suffer needlessly. I also explained that I understood that Lyra was expensive for Anthem. She is bad for their business model and it is more beneficial for them if her health deteriorates and she dies, than for them to allow doctors to give her all of her medically necessary care. It was blunt and painful, but it’s the truth when you are dealing with for profit medical insurance. She couldn’t even argue with me. She said she would look into Lyra’s case.

After that call I waited a week to see if anything happened. I hadn’t heard back from my contact, so I reached out to her again. I honestly don’t think she expected to hear from me again. I think she expected to allow me to vent, and then I’d move on. Obviously, I wasn’t done. I sent her an email in the morning of October 7, 2025, and by that afternoon I was informed that Anthem had changed their mind and her Botox had been approved. Within days I received an approval letter from Anthem in the mail AND results from Christopher Place. As noted above, Christopher Place also ruled in Lyra’s favor.

But the story doesn’t end there. Yes, we got approval. Yes, Lyra had the procedure and it helped. But what was in those documents? You know, the ones I kept asking for. Why did they continue to say that the Botox was no medically necessary despite all of the evidence saying otherwise? What had changed their minds? Were there really no documents?

So, I tried again. I made another phone call to Anthem with the same results. Then I reached out to my contact at Anthem’s parent company and explained that I was still being denied documents that I’m legally entitled to. She then passed me along to someone else within Anthem to try and resolve this. It’s December 2025 and I am still trying to get the information I am legally entitled to. At least now I have a name and an email for someone at Anthem. However, it takes her weeks to collect the documents. She informs me that CarelonRx is refusing to provide the documents to her, and she has had to get upper management involved. Finally, in January 2026 I receive 3 documents. The first two are redacted to remove names, including the names of the doctors who were listed on the denial forms Anthem had already sent me. These documents did not give any indication that Lyra’s records had even been reviewed. Even the peer-to-peer notes lacked any indication that the doctor had considered the information Dr. BG had given him. The notes didn’t even contain what information Dr. BG had given him. And the third document? Well, that was something that I hadn’t even requested. It was a transcript between my husband and their help desk regarding his own medical information. HIPAA anyone?

So, truthfully, I don’t think those documents exist. I think Lyra was denied care in bad faith. Anthem has been unwilling and unable to provide me, or my lawyer, with any evidence that they did their due diligence. And now, it’d April 2026 and I am back in the same place I was in April 2025. Fighting again for a Botox shot for Lyra. I have no faith that jumping through Anthem’s hoops will result in them doing what they are legally obligated to do. Hiring a lawyer is not financially an option this time around. All I can do is publicly shame Anthem. Even then, my reach doesn’t go very far. I am a 41 year old mom who just tries to make sure that her kids get to school, appointments, and swim practice on time. I’m a mom who just wants to enjoy whatever time I am granted with my daughter. I feel so lucky that I been gifted almost 11 years so far.

My platform might not be very big, and my voice might not be loud. But so long as I have one to speak with, I will say something. Especially since Lyra can’t.

As Maggie Kuhn said, “Speak your mind, even if your voice shakes.”

Creating a budget is hard, especially when you know you have to cut back on spending.  Anyone who has done it for their own household knows that. It is logical to focus on where you spend the most money, and see if you can make cuts in spending there.  If you spend most of your money on food, you might think: “I don’t need to eat out five meals a week,” or “I can pick up my meals instead of using a delivery service.” Governor Polis used this logical method to create a balance budget, but I believe failed to consider the human cost for what his cuts mean. 

There are many cuts to the FY 2025-26 & 2026-27 Budget Reductions that I cannot speak to.  I do not have the research, or the personal experience, to understand how they will impact the individuals who currently access those programs.  What I can speak to are how the cuts to the programs my daughter has access to will impact her, and our family. 

Lyra is currently on the Children’s Extensive Support (CES) Waiver for Medicaid. “Waiver” simply indicates that she qualifies for Medicaid coverage based on a need other than financial hardship.  Some of the resources she qualifies for though this waiver are:

• CNA care – skilled care for activities for daily living
• Community Connector Services- someone whole helps her go out and work on life skills outside of the home
• Homemaker Services – extra cleaning and maintaining of the spaces the individual uses

While she does qualify for many other services, these are the ones where funding cuts will most directly impact our family and her quality of life.  Let me be clear, I am well aware that my family is very lucky.  We are being impacted much less than many other families within my community.  However, the numbers will show that the “minimal impact” we will experience across these categories is substantial.   

Currently I provide all three of these service for Lyra.  I am a registered CNA.  I am licensed by the State of Colorado and subject to all of the same rules and regulations as any other CNA.  I work for a home health company (All For Kids Home Health), and my only patient is my child.  Given Lyra’s needs, she qualifies for 8 hours/day of CNA care (56 hours/week).  It is vital that Lyra gains skills outside of the home (community connector services), and learns 3how to interact with the community at large.  For those of you who personally know us, you know that we take Lyra everywhere: grocery store, out to eat, the zoo, the aquarium, local rec centers, etc.  It’s important for her understand how to pay for things, how to find items in a store, how to wait your turn to look at a fish, or how to behave in a restaurant.  These are life skills that are significantly harder for Lyra to grasp, and take significantly more practice and patience.  Community Connector services help to give us more opportunities to work on those skills with her. She qualifies of 10 hours/week. 

Lastly, and possibly most difficult for some people to understand, Homemaker services.  Should I be washing Lyra’s clothing, cleaning her dishes, and generally trying to keep a tidy house regardless of Lyra’s needs? Absolutely.  We all work to take care of our homes, and cleaning is part of that.  However, the amount of cleaning and level of clean required for Lyra is above and beyond what is required for an average 10-year-old.  Also, Lyra is not capable of helping with any of these tasks in a meaningful way.  Lyra has significant gastrointestinal issues.  She is also incontinent and wears diapers.  Just like with infants and young toddlers, accidents happen daily.  However, I am cleaning up after a 10 yo, not an infant.  Blow outs take on a whole new meaning when your child is 10.  Also, Lyra struggles with reflux and spits up or vomits daily.  The amount of laundry we do is significant.  Not to mention, cleaning the various bodily fluids off of other surfaces.  While I could technically hire someone else to do this cleaning, recent changes to Medicaid requirements for providers have made it impossible to find someone.  Also, it’s not like I can call them at 2am to come clean her bed and start a load of laundry.  Lyra qualifies for 10 hours/week.

So, let’s put this in a chart and figure out roughly how much financial support we get currently, and how much we will get with the proposed changes. Keep in mind, due to Lyra’s needs, I cannot get another job.  Managing her care is more than a full-time job.  She has over 20 providers that I have to coordinate so she gets everything she needs.  Plus, I have to physically take care of her.

Now, let’s look at the proposed changes:

• Limiting to weekly “caregiving hours” to 8 hours/day (56 hours/week).[1]  – This will include both of my CNA hours and my Homemaker hours. 
• Reduce the number of allowable hours for Homemaker services from 10 hours/week to 5 hours/week[2]
• Reduce the number of allowable hours for Community Connector by half (down to 5 hours/week) and reduce the amount paid per hour.[3]  In a recent conversation with other parents and advocates, it was explained that the reduction in pay per hour was about 30%. 

With these changes, it’s time to look at how the financial support for our family will change.  Since CNA and Homemaker service hours can not exceed 56 hours/week, I will have drop Homemaker services.  I get paid more per hour as a CNA, so Homemaker will be 0.

With the proposed changes, our household will be losing $447 per week of financial support.  What will that look like over the course of a year? 

$447/week  x  52 weeks/year= $23,244 per year of reduced household support for a disabled child

Instead of multiplying $447 by 52 weeks, let us assume that there are at least 21 days (3 weeks) out of the year where I cannot provide those services.  Lyra could be in the hospital, she may have too many appointments one day, or we might do on vacation out of state.  Instead, we say 49 weeks.

$447/week  x  49 weeks= $21,903 per year of reduced household support for a disabled child

Many children qualify for significantly more CNA hours.  Many families are single parent households.  Without even losing CNA hours, our household will lose over $20,000 next year under Governor Polis’ new plan.  Maybe he can help my family figure out where we can cut $21,903 from our household budget to make up for his changes.

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[1] FY 25-26 HCPF Budget Reduction Items Fact Sheet – Update for Nov. 1, page 4

[2] FY 25-26 HCPF Budget Reduction Items Fact Sheet – Update for Nov. 1, page 4

[3] FY 25-26 HCPF Budget Reduction Items Fact Sheet – Update for Nov. 1, pages 4 and 5

Resources:

1. HCPF Budget Reductions Fact Sheet FY 2025-26 & 2026-27 Projected Reductions, Colorado Department of Health Care Policy & Financing, October 31, 2025, https://hcpf.colorado.gov/sites/hcpf/files/FY%2025-26%20HCPF%20Budget%20Reduction%20Items%20Fact%20Sheet-Update%20C.pdf?fbclid=IwY2xjawOC6nFleHRuA2FlbQIxMABicmlkETEya2ZoeFZNQlB3T3NsMDhic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHlDMphSaEHt8kCc_yfTHpcRp4EN0-tKwsPV-MFK5ZcfcFZhukCf_dsW4GCAF_aem_TX6WeN_eNxRr22XXNewkcw
2. Medicaid Sustainability and Colorado’s LTSS System, https://hcpf.colorado.gov/medicaid-sustainability-and-ltss?fbclid=IwY2xjawOC6mhleHRuA2FlbQIxMABicmlkETEya2ZoeFZNQlB3T3NsMDhic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHkFS3CoVkJKrnf0UdIRM-TzUFLzFZU4fi03hvZ5azJ0TbPzlTsMy3tkRWh2b_aem_dlTmvhQX-mWUngExHiTkGQ#FactSheets
3. Children’s Extensive Support Waiver, https://hcpf.colorado.gov/childrens-extensive-support-waiver-ces

Lyra turns 10 years old in just under a month (May 11th). It kind of feels unbelievable to be writing that. So, to recognize how truly far she has come, and to celebrate all of those who have been cheering her along the way, we are hoping that you all would be willing to send her letters for her birthday. Well, letters, pictures, postcards, drawings. Really, whatever way you want to celebrate her birthday. The plan is to put everything in a book for her. She has built such an amazing community of support, and she wouldn’t be thriving the way she is without all of the support she has had along the way. Honestly, it doesn’t matter if we haven’t met face-to-face, or if you have never even commented on one of these posts. We’d love to hear from you anyways. While things have been hard and uncertain recently, it’s the community that keeps up going and reminds us of all the positive things. So, let’s celebrate that for her birthday. Please send your letters to:

Jaime Garnick
PO Box 26
Erie CO 80516

Thank you everyone, for all of your support over the last decade. We are so happy to be here.

I have sat for a long time thinking about sharing this with the world. Mostly, because I have to expose more of Lyra’s medical information than I am normally comfortable with. Also, because I doubt it will do anything to help her. However, I am at the end of my rope and Lyra is the one paying the price.

Anthem is denying a procedure that has the potential to dramatically improve the quality of Lyra’s life. For almost a year now, Lyra has been gradually spitting up more and more. It is to the point where she spits up over 30-60 times per day, most days. We have two GI specialists that we work with Children’s Hospital of Colorado. One of them is a motility specialist, and the other has worked with Lyra since she was 3 months old and handles her nutrition. We have tried adjusting all 7 of Lyra’s GI medications, and we have changed Lyra’s diet. These changes have resulted in negligible improvements.

So, what is this procedure, and what is Anthem denying? Lyra needs to be put under anesthesia, have an endoscope put into her stomach, and botox injected into her pyloric muscle at the base of her stomach. It is quick and minimally invasive. Anthem doesn’t have a problem with the anesthesia. The insurance company has approved for her to go under two other times this coming summer, and we can tack on this procedure to one of those (a brain MRI, and getting her ear tubes replaced). Maybe it’s the endoscopy? She’s had many of those, and Anthem has never denied one in the past. That also isn’t what it is denying now. No, Anthem is denying the botox shot. The actual medicinal part of the procedure.

To be clear, Anthem isn’t denying the procedure saying that it is experimental. The use of botox in pediatric medicine isn’t as uncommon as one might assume. In fact, this would not be the first time that Lyra has gone under anesthesia to receive botox shots somewhere in her GI tract. She had another procedure, done twice, in a different area that dramatically helped part of her GI tract.

So, what does it mean for Lyra if we don’t do this procedure? How does it impact her in ways that she recognizes? Lyra now has to wear a bib, at almost 10 years old, most of the time. She absolutely hates wearing them, but it is easier to change a bib than it is to change a shirt. Her shirts and pants are constantly stained and often have a smell to them from the spitting up. It is not uncommon for her to be on her second or third outfit by the time I take her to school. Lastly, she can no longer eat many of her favorite foods. We have had to greatly restrict her diet and make it much more bland in order to keep her stomach as settled as possible. This has meant cutting out so many of the foods that she enjoys eating.

Remember, Lyra hasn’t been eating by mouth for very long. To be honest, if you take all of the joy out of food for her, there is a real possibility she will stop eating all together. Oh, and guess what else Anthem is denying? Anthem is also denying the only food that she tolerates through her feeding tube AND her feeding pump. You know, the thing that has kept her alive for the last 9 years. The thing that still runs for at least 8 hours every night and gives her 50% of her calories and most of her fluids.

I’m not sure what I hope to accomplish by this rant. But I am just at a loss. Her doctors and the hospital have been filing appeal after appeal. I have made phone calls to try and get as much information as I can, and I am just not getting anywhere. Outside of the “inconveniences” the spitting causes, there are actual medical consequences that we have had to deal with as a result of this spitting up. I am just trying to get Lyra the care she needs. We all are. Except Anthem.

Anthem, it’s one shot. One.

Sometimes I feel like I am screaming at a wall. People say they want us there. Want us included. Want our family to be included. But when we ask if they considered if their plans are wheelchair accessible, or what activities our child could participate in, we are faced with blank faces. When we ask about food options, access to refrigeration, and places to change a diaper, we see eyes glazed over. We are told she wasn’t considered. We are told that the world can’t revolve around us. We are told to leave her behind.

I am asked what our life with Lyra is like. I whisper. I talk. I project. I yell. I scream. Yet, there don’t seem to be ears connected to the mouths asking the questions. The mouths seem to be attached to walls of indifference who want us in their lives, but only if Lyra can climb her way to their standard of “normal”. They want to hear about our lives the way they want to listen to a true crime podcast. They don’t want to hold the hand of the widow of the murdered husband. They don’t actually want to understand Lyra or what her life is like.

I know I shouldn’t waste my time, energy, etc. on these people. I know that there are others with actions bigger than their ears, and ears bigger than the mouths they use to ask their questions. I know there are people who ask what needs to be considered so that we can be part of the adventure, before any plans are made. There are people who would never consider leaving Lyra behind. It’s just hard when there are so many people who think that’s an acceptable option.

I’m sitting in the ER waiting room. We’ve checked in. Two families were already sitting when we walked through the door, and another was in the process of being checked in. I can’t tell by looking at the children if they will be prioritized before us. I made to sure to pick a chair a few feet from everyone else there, but made sure that it still left open spaces for other families who are bound to come in. I know how many of my friend’s kids have been sick. I gently stroke my child’s hair and read a book on my phone. At least, I think I’m reading it. I’m not really sure what the last page said, but I know that “Bluey” is playing on the TV and my child’s iPad is playing something.

Should I tuck her chair back more? I smell something rotten and familiar. Is her diaper dirty? Or did she silently vomit, and I was too absorbed in my book to notice? I snap my eyes up while silently reprimanding myself for being an inattentive parent.

It’s then that I realize that I am with Ranen, not Lyra. Ranen has the fever. “Super Kitties” is playing on the iPad, not “Sing”. Ranen is sitting in a regular chair, not one with wheels. He doesn’t wear diapers, and he would warn me before he threw up.

This is what flashbacks can look like for me. While I was with Ranen this time, my brain had trouble remembering that.

While going to the ER with Lyra is very routine, it is also re-traumatizing. From an outsiders perspective, I may seem very calm and collected. I show up with snacks, water, chargers, and often a sweater. I repeat over and over again to providers along the way that I know what to expect, and I seem to have it all together. I’m often praised that I seem very calm and collected. What they don’t notice is my obsessive checking of monitors and clocks. If there is a dip or spike, I can tell them exactly when it happened. I can tell the providers trends without them looking at charts. They don’t know that, as soon as they left the room, I made sure to locate the extra towels and clocked where the trashcan and laundry basket were. They don’t notice that I keep the call button by her head, so if things so wrong, they can hear me while I care for her. These days, I am normally only in the ER with her for a UTI test. It’s a simple and quick visit. But every time I go in, my body is prepared for the bad visits. Apparently, even when I am only there with Ranen.

Oh, and Ranen is fine. He has strep and of course started running a high fever when the doctor’s office was closed. After 2/10 doses of antibiotics he spent the day running around the house and talking our ears off. Lyra enjoyed his chaos.

It turns out my last post on this was very therapeutic. So, here is another post about our life. Specifically, about a normal school day with Lyra for me. With Ranen (my 5 year old), I basically check his backpack for anything growing, rocks, sticks, and throw in new snacks. For Lyra, it’s a whole different ball game.

After picking her up at school, the first thing I pull out of her backpack is the dry/wet bag of dirty laundry. Then I remove the ice pack from her medication cooler and place that in the freezer, then wash her medication syringes. Lastly, I pull out her communication book. This is a book that lets me know about her day, since she can’t tell me what she did. It contains all the daily information I need to continue her care for the rest of the day. I look for:

• When her diaper was changed, and what was in it.
• When she was given water and medication through her feeding tube
• Any notes about needed supplies, or concerns teachers/paras may have
• What therapies she did that day
• What activities she was involved in that day

This information lets me know about Lyra’s immediate needs when we get home. After school, I often do a load of laundry with all of the clothing, bibs, and washcloths that came home with her that day. I need to make sure I give myself enough time to both wash and dry those items so that they can go back to school the next day.

In the morning, I double check the communication book and add any notes for her teachers (ie, if I have to pick her up early for an appointment, or if she hadn’t slept much the night before). I make sure she has her talker (communication device), the communication book, replacement extra clothing, replacement bibs/washcloths, pre-dosed medication in her special cooler, emergency feeding tube supplies, and any other supplies that the school has indicated they are running low on. Needless to say, her backpack weighs a lot and she can not carry it herself. Sometimes she even has an additional bag because everything won’t fit in her backpack. I then drive the kids to school where I am met at the car by a para educator who takes Lyra, and all of her stuff, into school for the day.

While Lyra is at school, I have to always be available via email, text, and phone. I get daily communications about incidents during the day, paperwork that is needed, and/or additional planning to meet her needs. I hear from teachers, the school nurse, therapists, and/or school administrators every days (often more than once). Even without her being with me, I still need to be available to manage her care from a distance.

At the end of the school day, I go to pick the kids up and the cycle starts again. Many days I wish I could fully unplug, even for an hour or two. However, it’s just not in the cards.

I know that I have been a bit of a ghost on this page. It’s hard to know what to write, and what I want to share with the world at large. Recently I have been thinking a lot about what life looks like for our family now that Lyra is 9 years old. Now, I remember when I was 9 years old very clearly. A lot happened in that year of my life that makes it stand out very clearly. I find myself frequently comparing what I was doing, and who I was, to who Lyra is now. Needless to say, my parents experienced me being 9 very differently than I experience Lyra being 9.

What do I mean by that? Well, just before sitting down to write this, I went into Lyra’s room to start her overnight feed through her feeding tube. While in there, I noticed a very particular smell. She had pooped in her diaper while asleep, and I needed to change her. Yes, my 9 year old is still in diapers. No, there are no signs of being able to potty train her at this point.

Another example? By 9 years old, my mother never dressed me. Heck, she didn’t even pick out my cloths unless it was a special occasion. With Lyra, every morning I wake her up and transfer her to her changing table. I change her diaper and pick out her clothing for the day. She doesn’t care what I pick. She can’t pull a shirt over her head, or pull up her own pants. She doesn’t have a favorite pair of socks, or a hair band she just has to wear. It is 100% up to me (or my husband) to get her dressed, brush her teeth, and pull back her hair. And yes, Mark has definitely learned how to do a mean ponytail.

Traveling? By 9 years old I had flown to California by myself at least once. When I traveled with my family I was in charge of my own carry-on, and I was walking on my own two feet. Traveling with Lyra is a process (to say the least). Lyra needs more clothing than a typical child. She spits up, sometimes her diaper leaks, and mishaps with her feeding tube happen. In her carry-on we typically have 3 changes of clothing. We have a small suitcase that is her medical supply bag. This contains all of her medications, 3 days worth of liquid formula (you can’t buy it in stores), 3 days worth of equipment needed to use her feeding tube, and extra diapers/changing materials. The bag is always bursting at the seams. Then we have a backpack that is her diaper bag. Also stuffed. She also rides in an adaptive stroller, so that’s fun. While traveling, we have to monitor how often we change her diapers, how much fluid she has had, and when she needs her various medications. You think changing an infant’s diaper is hard on a plane? Try changing a 9 year old’s. There is also keeping her entertained and making sure we have foods that are safe for her eat. Of course, this is all just for Lyra. We also have our 5 year old, his stuff and all of our stuff. And don’t get me started on the checked bags. We look like we are traveling with a small village of people, not a family of 4.

But traveling rarely happens. We really only travel once or twice a year. That is about all we can handle. But what about the stuff that is more daily? Meals? By 9 years old I was helping my mom cook, especially when it came to things like cookies. I could cut my meat myself, and had no problem biting into an apple. We just remodeled our kitchen to keep Lyra out of the kitchen because it is not a safe for her to be. Foods like grapes, cherry tomatoes, etc still need to be cut in half. Not only can Lyra not cut her own meat up, she needs it to be placed on a fork for her. Otherwise, she just eats with her hands. In fact, she still struggles biting off bits of food, so everything needs to be cut to an appropriate size for her. And hard foods, like raw carrots, are a no-go for Lyra. We feed her foods like yogurt by hand, as if she were an infant. While we work on utensils consistently, it’s simply not a skill she has at 9 years old.

There are so many things I think about regularly about how my life with her is so different than my other friends with 9 year olds. Maybe I’ll share some more of those thoughts. Maybe I won’t. But I am coming to understand that no one will know how different my life is, unless I share something about it. So, I guess this is my little attempt to do so. I’m not looking for pity. I don’t think my life is “bad”. Lyra is absolutely my sidekick, and we laugh together basically every day. Our lives are just really different, and I am hoping that more people can understand that.