Wednesday, March 5, 2014

“You’re Here Too Much”

After spending all morning at Cook's today for Madison to have a procedure done, I remembered that I had written this post and in my busyness, failed to post it back in November when it was written. Working on getting back into the swing of things here on the old blog. It may take a little different direction from here, but it desperately needs to be revived.

Cook Children's Hospital
Ft. Worth, Texas
November 2013

Cook Children’s, compared to other children’s hospitals we have been in, is medium sized and laid out in such a way that we run into many of the same people in the hallway, regularly. It is also...probably because of this main hallway concept...a place where we see not just our nurse’s and child life specialists, but also our doctors. It’s also an incredibly friendly place, so these amazing professionals don’t hesitate to stop and say hello.

Occasionally see celebrities too!!
Garth Brooks with Chanel,
one of two therapy dogs now in residence
 at Cook Childrens

The truth is, we spend a lot of time there, wandering the halls from point A to B, and sometimes just wandering as we kill time between appointments. Add in our volunteer time, and yeah…

We are there frequently, and we see some of the same people in passing more than others, with our Palliative Care doctor being one of them.

He always smiles and acknowledges us, and always appears to be on a mission to get somewhere expediently, so we smile, say hi, and move on.  This week though, the comment was not “Hi, nice to see you.”, it was…

“You’re here too much.”

And the truth is, I couldn’t read the intent behind it.

As in, was he saying this out of concern for us? Was it directed at me in an accusatory way? Or, was it just an observation?

I really don’t know.

At the time my thought was, HA!! You have no idea!! We see him, in passing maybe once every 4 or 5 times we are there. And even if, out of curiosity, he’s checked the schedule to see what it looks like, he doesn’t know about the times we are there for volunteer activities, or unexpected appointments. He really doesn’t have a clue how much we are really there.

And then I wonder, what if he did actually realize how much we are there?

The truth is, this schedule we are keeping is not happening without contemplation. There is a rhyme and reason if you will, and while it remains something that should be regularly re-evaluated, there is little that happens in our lives that I have not considered in great detail.

Early last year we were in a difficult place. Madison was quite unwell and really needed to be inpatient, however, the specialists we needed to be involved were at two different hospitals here in town, and our pediatrician and I spent hours contemplating what was the best course of action. Ultimately I decided that we honestly did not have a place to go where her needs could truly be met…where I was not likely to be insane from the experience, and most likely bringing her home no better than she went in. I realized in that moment that while our way of doing things had worked remarkably well for a long time, we were moving into a place in this journey where having a “home hospital” was critical to the kids care.

We will always be split to some extent, with our Houston team needing to be a part of what is going on, but here locally, it was time to commit. Our local team was too scattered, and as coordination of care became more important, this scatter was hurting us, not helping us. We needed to pick a “team” and go for it, as scary and overwhelming as that seemed at the time.

So as I cared for my daughter here at home, with the support and guidance of our pediatrician, I formulated a plan to slowly and deliberately start building our team at Cooks. We already had some awesome, key doctors there, and it is definitely the hospital I prefer being in if we need to spend some time inpatient. So while not the closest hospital, and not the hospital our beloved pediatrician has privileges at, for a whole host of reasons, it is where we need to be.

Iron infusions x 2

This decision comes with sacrifices (don’t they all), and in this case, we went into it knowing it meant more time on the road, being further from home, for more hours than we had been. It meant being patient as I worked with schedulers and found ways to get more than one appointment scheduled in a day to make it a more worthwhile trek. It meant building a support system there that allows us to incorporate the fun, worthwhile things to do as we accomplish the medical side of our lives.

Construction wall the kids have helped paint

This decision also comes with some awesome advantages!! Some we have seen, some we are still working on, but the potential is there. It is truly becoming our “home hospital”, in more ways than it being where the bulk of our doctors are…

and this is vitally important.

This place, where there is the potential of spending hours per week, needs to be more than just a building and medical professionals…needs to be more than just a place where we know we can get good quality care. Unknowingly at the time, I have come to realize that a “home hospital” needs to be a place where…wait for it…

we feel AT HOME.

Where there is, at least potentially, more to be had from a visit there than good medical information (as vitally important as that is). As strange is it may be to contemplate for most, the reality is, when you spend half or more of your life in the medical world, it’s in the medical world that you find your friends.

Sunday, November 10, 2013

Back in the Saddle & Leaning In

I wanted to be a part of a group of bloggers writing something every day for November, but alas, here I am, 10 days in and it hasn’t happened. My intentions were good, but I knew with the month starting off  in Houston for appointments for a week, it wasn’t likely to happen. Let’s face it, intentions are only half of what it takes to accomplish something. I need the motivation though, and am still going to try to make a stab at publishing on more days than not for the rest of the month. Lord knows, it’s not from a lack of experiences to share!!

I am missing my time here. I am missing the chance to “get it out” and move on. I am missing the chance to share some of the really awesome things happening for our family. So here we go.

Although my inclination, at moments, is to run away, I am instead, leaning in.

Leaning in to finding a solution to our medical coordination woes.

Leaning in to enjoying the fun things we have happening, almost as often as the "not fun" things, and to the precious people in our lives that make them possible.

Leaning in to finding a balance again in our lives. Working real living in AROUND our medical lives is NOT the way this works best!

Leaning in to our volunteer opportunities, and making them as much a priority as all the rest, because they really MEAN something in our lives, and others.

Leaning in to the learning that comes with new ways to help the kids medically, and praying for the time and energy to give them a chance to work.

Leaning in to the opportunity to share the knowledge we have gained after so many years in this medical world, and, God willing, leaving a legacy for others.

Leaning in to working on being the best mother/wife/sister/daughter/granddaughter/friend I can be. 

On this list of items worth leaning in to, is this blog. It's part of the balance thing. It's worth my time and energy. 

Silence very seldom means nothing is going on over here, and actually means quite the contrary.

Silence often means, you wouldn't believe it if I actually wrote it out!

Lots to update on....some awesome and amazing stuff, some not so fun stuff, and lots in between. 

Leaving you with much love and hugs. We are good...crazy busy, but good.

Just need to keep leaning in to this exceptional life we have been given!!

As the holidays approach, where are you finding the need to lean in?

Friday, August 16, 2013

Mito & Disability Benefits: Guest Post

One of the more daunting things I have had to face when it comes to my children's needs has been finding what benefits might be available, and then applying for them. When there is already so much going on in every day life to support a medically complex/special needs child, adding in a bunch of paperwork, and navigating an unfamiliar system can be overwhelming. It is worth the effort, and there is help out there to take some of the mystery out of the process.

Molly, at Social Security Disability Help (, contacted me recently to ask if I would allow her to contribute to my blog with an article that could be helpful to my readers, and I jumped at the chance to have someone far more knowledgable than I to share this information. I have some additional information to share at the end of her article regarding Waiver programs, and some personal "words of wisdom". 

Applying for Disability Benefits for Your Child with a Mitochondrial Disorder
According to the United Mitochondrial Disease Foundation, mitochondria produce about 90 percent of the energy that the human body needs in order to function. There are many different diseases and illnesses that affect human mitochondria. Mitochondrial disorders affect people in varying ways and often cause a host of severe health complications.

Although adults can develop mitochondrial diseases later on in life, many individuals are either born with mitochondrial disease or develop it within the first ten years of their lives.  Caring for a child with mitochondrial disease comes with a unique set of responsibilities and challenges. Among these challenges is the added expense of specialty medical treatments, supportive care, and assistive technology. Although many of these things are required to keep a child with mitochondrial disease comfortable and healthy, they can also be very costly.

If your child has mitochondrial disease, you may qualify for Social Security Disability (SSD) benefits on his or her behalf. These payments can be used to provide your child with the things they need to live the healthiest lifestyle possible.

Is My Child Disabled?
To qualify for any type of SSD assistance, your child must have a documented disability. The Social Security Administration (SSA) considers children disabled if they meet the following criteria:

·       Your child does not earn a substantial income
·       Your child has a physical or mental condition that significantly limits his or her daily activities
·       Your child’s condition is expected to last at least one year or result in death.

In addition to meeting these criteria, your child must also meet very specific technical and medical requirements.

Social Security Disability Insurance
The SSA runs two separate programs that provide benefits to individuals with health conditions and disabilities. The first program—Social Security Disability Insurance (SSDI)—offers benefits to disabled workers and their families. Because eligibility for SSDI is based on taxes and work history, many children and young adults cannot qualify on their own record.

However, if a parent or guardian already receives SSDI, a child may be eligible to receive benefits on the qualified parent’s record. It is important to note that, if your child is over 18 but became disabled before 22, he or she is considered an “adult child”. Adult children may also qualify for SSDI on an eligible parent’s record.  This type of payment is called auxiliary or dependent benefits. You can learn more about this here:

Supplemental Security Income
The second disability benefit program is called Supplemental Security Income, or SSI.  SSI benefits are paid to elderly or disabled individuals who earn very little income. SSI has no tax or work-related requirements. For this reason, SSI is often the best option for young adults or children who haven’t had the opportunity to work or pay taxes.

To qualify for SSI, applicants cannot exceed very strict financial limits that are put in place by the SSA.  When an applicant is under 18, a portion of his or her parent’s income will be evaluated to determine whether or not he or she is eligible. This process is called deeming. To find out what types of income are deemed and what types are not, visit this page:

Once your child turns 18, or if he or she is already 18, the SSA will only count his or her income to determine eligibility for SSI.

Medical Requirements
In addition to the previously mentioned technical requirements, your child will also have to meet very specific medical criteria. These medical criteria are listed in the SSA’s blue book—the official list of potentially disabling conditions and qualifying criteria. There are many different mitochondrial diseases and not all are listed in the SSA’s blue book.  

If your child’s condition is listed in the blue book, there will be a list of very specific medical requirements that you must be able to document in order to qualify. If your child’s condition is not listed in the blue book, he or she may still be able to qualify if their symptoms closely match those of another listing.  Depending on your child’s specific symptoms, he or she may qualify based on the following listings:

·       100.00-100.03- Failure to Grow
·       111.00-111.09- Neurological (covers motor dysfunction and seizure disorders)
·       112.00-112.12- Mental Disorders (covers autism spectrum disorder and developmental delays)
·       102.00-102.11- Special Senses and Speech (includes vision and hearing problems)
·       104.00-104.13- Cardiovascular
·       105.00-105.10- Digestive System (covers liver disease and gastrointestinal disorders)
·       109.00- Endocrine (diabetes)
·       106.00-106.07- Genitourinary (kidney disease)

It is very important that you collect thorough medical documentation of each of your child’s symptoms prior to submitting his or her application for disability benefits. Documentation should include records of his or her diagnosis, lab test results, history of hospitalizations, response to any treatments, and any other relevant information. You should also collect written statements from any professional adults who interact with your child on a regular basis. This can include teachers, doctors, therapists, or coaches. Each statement should outline your child’s symptoms and how they interfere with his or her daily activities.  The SSA requires these records as proof of your child’s illness. Without these records, it is not likely that your child will be approved. For a complete list of the documentation you will need, see the Child Disability Checklist-

Compassionate Allowance Listings
The typical application process can take months to complete. The SSA recognizes that individuals with certain conditions cannot be expected to wait the standard processing times. For this reason, the SSA allows people with severely disabling conditions to be approved for benefits in as little as ten days. This is called the Compassionate Allowance (CAL) program.  Fortunately, certain mitochondrial disorders are included among the conditions that qualify for compassionate allowances processing—including Pearson Syndrome, Alpers Disease, NFU-1 Mitochondrial Disease, MERRF, and Leigh’s Disease. To qualify for CAL processing, you do not need to fill out additional paperwork. The SSA will evaluate your child’s claim and expedite it accordingly.

The Social Security Disability Application Process
Once you have collected the necessary documentation and feel ready to begin the application process, you will be required to complete two different forms—the “Application for Supplemental Security Income” and the “Child Disability Report”.  Although you can complete the Child Disability Report on the SSA’s website, many applicants prefer to schedule an appointment to complete both documents in person.

It is important to remember that the application process for disability benefits is not simple and straight forward. In fact, many initial applications are denied. If your child’s initial application is denied, do not panic and do not give up. You are allowed to appeal this decision. Although the process can be difficult to navigate, many people find the end result to be worth the hassle. Once you are awarded benefits, you will be able to provide your child with the necessities of a comfortable and healthy lifestyle.

For more information, visit Social Security Disability Help or contact Molly Clarke at

Thank you, Molly, for the insightful article!! Sometimes, just seeing something simply laid out can remove some of the anxiety over delving into something like this.

I wanted to add to the information Molly shared, with some of the other benefits that may be out there for families with medically complex/special needs children.

Katie Beckett Medicaid Waivers
All states have Waiver programs, generally called "Katie Beckett" Waivers, although each state has specific names for those that they provide. These programs are technically Medicaid Waivers that allow the child's needs to override the income requirements otherwise placed on families to qualify for SSI. Each Waiver is a little different in what it provides, but all provide Medicaid benefits in addition to any number of other options to provide support. Most include either respite, attendant, or nursing hours; while some include alternative therapies, home modification money, and more.

Many states have a waiting list that can be, as it is here in Texas, as long as 10 years before you can access these Waivers, so getting on the list as early as possible is imperative, even if your child qualifies for SSI benefits at this time. Your income could improve, causing your child to lose the SSI benefits, but more importantly, these Waivers supplement the benefits even if your child continues to be eligible for SSI.

Words of Wisdom
I remember vividly how, in those early days when your just beginning to accept and acknowledge that your child may be delayed, or that they may have a chronic medical condition, that all you want to do is assume that your child will improve. That, especially ten years down the road, they will certainly not need this help. Please don't assume hopeful and aim in that direction, but be prepared by going forward and getting on the waiting lists for these programs. If, as we all hope & pray, it is not needed when they reach the top of the list, you can always decline the evaluation for the benefit. 

A Camp wrap up post is being worked on!! Have a wonderful weekend!!
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