Friday, October 11, 2019

Startling Reality on Awareness: Part 3 ~ Facilities Unequiped For The Most Needy- Call To Action

Today, I am taking this Awareness journey down a bit of a side street.

It's a road that many of us do not have to travel and the thought never occurs that something could be amiss.

We can't be aware of what we don't know! {One of my favorite Motto's}

Some only have to travel this side street occasionally and others, like myself, find that side street to be our main route..

What is this "Side Street" that I keep referring to??

The ability (or inability) to take care of our challenged children (and adults), while attending doctor appointments -in hospitals and otherwise..
{I am apart of multiple Facebook groups for special needs (TinySuperHeroes, Dandy Walker and Hydrocephalus groups among others). These groups are amazing and I love the help and support that I get from the other members. Brainstorming ideas to help each other, is a big benefit. I will post details on my favorite group, TinySuperHeroes, at the bottom of this post} 
In these groups I began to see the idea of "adult changing tables".
My guy is still little (not quite 2 and JUST hit 25lbs.), but even so, it is something that I began to pay attention to.
Before we know it he will be much bigger and this issue will be even more prominent than it already is.
The vast majority of hospitals, it seems, are only equipped with a standard changing station (like Koala) but there are some that are already making this awesome change to adult sized changing stations and more that are moving towards it.
That is The Best news!
Why, all of a sudden, am I getting real serious about this situation?
Our Axel has a colostomy bag. He also has hypo tone in his stomach and hyper tone in his arms and legs (basically, his arms and legs are strong, built like Popeye and his tummy is not, like Olive Oil). Add deafness and global delay and some things can get a little tricky.

We had appointments at U of M Mott's children's hospital, recently. Literally, as soon as my foot hit the doorway, I smelled the fact that Axel's ostomy bag had ruptured.

If you can smell it, something isn't right! ha

In my head I was running down my list of options;

1) The Koala changing stations are great but wholly inadequate to change my son's bag. They are 3+ feet off the ground, too small and the "belt" goes directly across his colostomy- which makes it impossible to clean and replace a new bag.

Then the fact that more than a few supplies are needed to change him- with no where available to set them and usually about 10 minutes needed to complete the process.

To add more difficulties, our little guy may not sit up or walk, but I am here to tell you that this kid can MOVE! He spins himself in circles on ANY doctors' table he comes into contact with. On his back, he pushes himself as far as he is allowed, toward the edge. Every single time. I have to hold his ankle in a vise grip to ensure his safety. So frankly, those Koala changers just make me nervous. 10 minutes on one of these could cost much more than my sanity. A fall from one would have devastating consequences. While I take very good care not to take my eyes off my guy, accidents happen all the time and it scares the life out of me, to think of it.

2) Change it on a patient bed. This seems like a great option, but mostly, those beds are in the middle of the room and there isn't a wall to "trap" him against. By myself, changing his bag (which already requires 4 hands when I only have two) without any form of security, is a no go. I need both hands to work on the bag and wouldn't be able to keep him near me, while doing so. (At home, the worst he can do is scoot away and we pull him back, but this is a whole different situation). 

A sweet nurse offered to help me hold him down on the patient bed. While I really appreciate her offer,  I recognized right away that would not help the situation. Instead, it would infuriate my little guy and cause him to cry and flail around, as he tried to beak away. Stillness is mandatory while changing his bag, so that option was completely out of the question.

3) changing him on the floor..

Honestly, it would take A LOT for me to consider this. My guy is a floor crawler (on his back, always) and I don't even want to think about what he would touch. Whether its on the clinic floor or a bathroom floor. You really have to sit back and think about the what ifs before deciding on this option. All we can do is make the best decision at that time, and pray it's the right one.

 If he had feces all over, I would have HAD to figure something out. There are certain times when it absolutely cannot be delayed.

4) The "trunk" of my Escape. This could be an option if there were fair temperatures outside, but it was chilly inside of the parking structure and winter like days are not far away. This is a struggle that does not go away, regardless of the weather ;)

5) We live over an hour away, so that's about 2.5 hours of driving, plus the time it takes to be seen and sent on our way, so just about 4 hours, before we would be home again. Most of the time that is WAY too long for us to want him sitting in such an unpleasant situation.

6) Contact the main hospital number and ask them if they have adult changing stations ANYwhere in the hospital. No, Gotcha, that was fun..... Honestly, the operator tried her best to help me. She called more than a couple of different areas where that could be a possibility, but was told they could only offer a "family bathroom". Unfortunately, those bathrooms also only contain the Koala changing station  that I mentioned as option #1.

In this case, we were lucky that his bag only had a small leak and it hadn't escaped the contraption yet, so I opted to wait.

However, when we got home, since I made that decision to wait, his stoma was suffering. It was bleeding and looked very sore and unhappy. :(
His stoma will be fine. After some TLC and extra bag changes to re-add the magical powder that makes it all better.. But it'll take a little while before mr. stoma is happy again :( ....and extra costly supplies that insurance does not pay for.. 
Through insurance Axel gets 1 bag, 1 wafer, 1 remover wipe, 1 barrier wipe and 1 half-moon tape, per day- just for his stoma. He also gets other "diaper" supplies for his vesicostomy and feeding supplies for his g-tube (gastrostomy [feeding] tube) We have to supplement everything to ensure that he is provided for each month. This life is not cheap.. With all of the things that our guy needs, it seems like an unending list that we could never hope to afford or provide.
What that means to me is... I cannot allow that situation to happen again. I will go through my options and we will have to figure something out that isn't waiting until we get home. Fortunately, staff is usually very helpful. It does really help to know that the people that care for our loved ones (for the most part) really care and want to make things easier, if they can. There just was not a perfect answer to our problem.

Should I have figured out other options? What if I did this or that.. We hate for our guy to suffer because of something that was avoidable but hind sight is 20/20, my friends and it's hard to beat yourself up over things that you felt could not be done differently.

At least not with how things are right Now..
After I am through with this thing, I will have contacted the hospitals and doctors offices that we frequent (and some we don't!) and will let them know of the struggles that most people keep under their hat, so as not to draw attention to themselves.
The sadness and powerlessness that a parent feels when they take their child to appointments, only to constantly be told that the equipment is not available to meet the needs of the very patients their providing care for daily, is unimaginable. 
I'm doing this for my amazing little guy. For newly found friends in this special needs world. For people I haven't met yet and people whom I never will.
I feel that pain. Your pain. I may be on the caregiver side of this issue, but I see how my son struggles and fear how he will suffer in the future.

We need to get the world up to speed, folks.  

In the past these things weren't available or even thought of.

THIS isn't the past anymore. 
In THIS present, THIS Era, things have changed.
The equipment exists that can change the ability and feelings of thousands of people (maybe millions??). Give them that sigh of relief when they realize they will not have to struggle today, to care for their loved one, after leaving home.
This is where I issue a Call to Action!

Click above to see the Action Letter I created for ease or create your own!
I mentioned that I will be sending letters/emails and making phone calls to various hospitals, letting them know of the huge benefits of adding adult changers to their facilities.

Could YOU do the same?!
If we all team up, we can make a real difference in the lives of those who would really value this change. While I love the idea of being able to use them, I can't help but think of all of the other people that would benefit.
More people than we realize, need additional accommodations to care for themselves. I can't imagine how reassured they would feel to know the "where" isn't an issue.  


Will you join me!?

Will you stand up and fight for those who can't and for those who fight for them??

We can make a difference!

We can't be Aware of what we Don't Know!

Get Your Awareness On!!

Do you feel strongly about something? Drop me a line and let's see if we can get some Awareness on!


TinySuperHeroes is an awesome non-profit that I discovered while researching Axel's conditions.

They have a web site and also have a facebook group for all of the special needs parents. The support they offer for us parents is crucial and helps most of us get through the rough times.

You should check them out at the link, if you know any special humans that could benefit.

You nominate them for a cape, share the link and attempt to get donations for the cape. However, even if you are not able to collect even $1, your hero will get a cape! These capes are just as crucial for our super kids as the group support is to us parents. It bolsters their confidence and helps them get through difficult things like doctor appointments, surgery, treatments and just being different. The "Patches Program" that they recently began teaches our kids some awesome lessons about themselves and other people, too.
It really is a Win-Win, for everyone!

I Sincerly hope that you will join me in pushing the world into a future where we can all flourish.

Would you mind leaving a comment or dropping me a quick email, if you have joined my call? I would really love to see how far this goes!

More than ever, please share this post any way that you would like. We need to see this change, quick!

Take Good Care and God Bless

Friday, September 27, 2019

Startling Reality on Awareness: Part 2 ~ Future Suffers For Our Deficiency

Our lack of awareness could cost the future.

That sounds a little dramatic, right..

I genuinely feel that is the truth, though.

If you missed part 1 of this series, 
you can find it here - Startling Reality on Awareness: Part 1 ~ The What !
Click the picture to find your color!
May not be a Complete or Accurate list of Ribbon Color Meanings
Every day that we are not making people (namely our children) aware of the differences in society (and how to react, treat and think about those differences) is another day that our world lives in the dark.
The dark that offers no comfort, support or love for those who need it, probably needing those things more than most..
If we do not guide our peers and children in good morals, respect, empathy, compassion and manners, there is no hope that our future world will be a place fit for the special people in our lives. Those that suffer from difficulties that I can not even imagine. Visible and invisible.
(I can imagine a lot, these days. I feel like there is very little that I can't imagine, medically- of course I am wrong, I know, but having my special needs little guy has put a lot of things into perspective for me and pretty much everybody who knows him. -I have told his story in previous posts but later in this series I will explain further, exactly what my statement means.)

 I guess my concern comes down to the fact that cancer gets a lot of attention. There are more than 100 different kinds, so it makes sense that it would affect a lot of people and garner a LOT of awareness!

Don't get me wrong, please.
 I am not saying there shouldn't be awareness for cancer. I can't imagine how difficult it is. It is amazing to see people come together from all over, celebrating each other when it's a battle won and offering support for those families who weren't so lucky.

This actually hits me pretty hard right now.
 I have been working on this post for a little while and was able to keep a "professional" viewpoint, until I got here.. That I would be writing on this topic, when my aunt has just reached the end of her hard battle, with this very thing, is unexpected and heart wrenching.
 I can only hope and pray that her transition was painless and that her husband and adult children can take a few loving memories from the end of her journey, with them and remember those instead of her last hardships..

 Back to my point..

I feel driven to get this out into the world!
There are so many things that people have to deal with and yet only a few "big ones" get any kind of attention.
Forget about rare conditions. They only see a tiny amount of publicity and funding because they're rare and such a small number of people even know that it's an actual "thing", (for instance, our Axel being born without an anus. Yes, we spoke those exact words- That's a Thing?!).

There are foundations for many of them, but not all.
Nonprofit foundations are amazing! These people have a true love for helping others and they do whatever they can to create and/or gather as much information as they can, to help anyone that needs it! The unfortunate part is that most of the funds come from donations. While Google says that in 2017, charitable giving reached more than $410 billion, how many charities are we talking, there? 
It lists that there are more than 1.5 million nonprofit charities in the world. Those numbers don't look too bad.. But.. something tells me that there are a lot of other charities that are "for-profit" that people might not quite realize. However, Google isn't quite as easy to pin down on that question.

Let's dig into this a little bit. I think I can help you better understand my view on this delicate topic..

Frankly the number of new cases of cancer (cancer incidence) is 439.2 per 100,000 men and women per year (based on 2011–2015 cases)
When you consider this United Nations estimates the number of men to approximately 3,776,294,273 while women are estimated to be approximately 3,710,295,643, in the world. Approximately, 107 boys are born for every 100 girls born.
Wow, those are some huge numbers!
I'll just use the men's figure,  for ease. Just remember to times it by 2 to get nearer to the actual number..
Oops, times that by 2, right.
17,196,239.85 people, per year, get cancer. That is mind numbing.

Now, lets take a quick look at something rare. There were many to choose from, but I decided I would use Dandy-Walker malformation
To say that I have a big personal interest in it, is putting it lightly. I've written much about Axel and the effects of Dandy-Walker previously at these links; Axel Post # 1Axel Post # 2
Axel Post # 3Axel Post # 4Axel Post # 5
Axel Post # 6All (10) of 2019's Posts

The frequency of Dandy Walker Malformation in the US is approximately
1 per 25,000 -35,000 live births and affects more females than males.
If you go back to that big scary number above, of how many people live there are in the world..

Times 2....
215,788.24 people are born with Dandy Walker, per year.
That's quite a huge difference!
17.19 million vs 215,000 per year.. That part gets me.. "Per Year"..
It is mind boggling to think that these numbers occur annually.

What about something ultra rare..
With only three diagnosed patients in 27 years, Bibose-5-Phosphate Isomerase Deficiency (RPI) is considered the rarest known genetic disease in the world. There is no treatment or prognosis (meaning the likely course and outcome of the disease is unknown.)

With such a low number, I'm sure we could all come up with an approximate number of people aware that such a thing could exist. 
Admittedly, I didn't know of it until today. Did you?

If I went even further, I could times that by possible family and friend guesstimates and almost get a general idea of how many people are AWARE of each of those conditions.. But- I won't even try to go there. I think these numbers make a few things very obvious.
OF COURSE more people are aware of cancer(s), it affects an alarming number of us.

This takes us back to my original point, "guiding our peers and children in good morals, respect, empathy, compassion and manners";
If something as big as cancer or as ultra rare as RPI can be in our world, think of the alarming number of others. {My 1st awareness Post- Part 1 The What- gives some information on that number.} 

More importantly, think of the people that are coping with these conditions, rare or not, visible or invisible, mild or severe. Symptoms unknown to passersby.
People that we see every day, people that we know and strangers that we pass, while going about life.
Some of these people would prefer to stay hidden, not letting the world know of their struggles and suffering, just to get through the day.
Other people go out and try to help- push and shove some interest into things (whether it's their own health or awareness for conditions) that many people just do not want to hear.

For instance. This Awareness Series..
I have a good purpose for putting a lot of effort and time into this.
But, I honestly question how many people will go looking for that startling information above.

I think most of us would be happy to bury our head in the sand, than to be so enlightened. 

Unless of course, a condition takes a hold of you or a loved one.
In those cases..
I think a good portion of us want to "Get our Awareness On!" and spread the word <3

If you'd like to Get Your Awareness On, Too, check out my Etsy!

Reference Links Not Listed Above;

By the way, it's Childhood Cancer and Hydrocephalus Awareness month
Many prayers sent for all of the warriors dealing with these difficult conditions <3

Dandy-walker --- 

Rare / Orphan Desease info

Monday, September 16, 2019

Something Special for my Sister

Today, I thought I would do something a little special for my sister. It's not her birthday or a holiday.. I just want her to know that I love her and how proud I am of her!

Send love to your sisters, today!
I had no idea that there is a sister's day! 

Obviously I missed it since shows that Sister Day is August 4th!
But she didn't know either, so it works out ok. ha-ha
 My sister, Christi, (or sissy as we like to call each other) is in my top 3 heroes..
It might not sound like it, but that's saying something...and she doesn't take offense. ;)
She is 3 years older than me, so I've pretty much always looked up to her.
She is the mother of my very 1st hero, my niece Becca.
My 2nd hero was easily found in our Axel. I was just a few weeks pregnant when we discovered what a warrior Axel already was.
We will tell their story as well as others, within my Awareness Series, at a later date. I'm looking forward to it and you won't want to miss it ;)

 Christi has taught me how to be a better mother and person.

At a time when I was too young to understand the model and influence that she was for me.

For the last 24 years, I have watched her work her fingers to the bone as she raised her children, had zero time for her self, began and rocked her own cleaning business and become an integral part of the management of apartments.

A little while ago, she fell in love with Paparazzi Jewelry accessories and became an independent consultant! 
She has the best Facebook show, every Wednesday at 8! 
Christi's Cuties Facebook page.
Her VIP group is Here!

 Being so focused on accessorizing, it makes a lot of sense that she has found the best makeup to show off her beautiful bling! Every piece of jewelry is $5 and lead & nickel free!

Christi Sparkles with Younique

On her pages, you will find information about the products, as well as pictures and a whole community of people! Check it out, you will be surprised what fabulous products she has!

 I am super proud of my sister!

She and I have been through a lot, we are best friends and there is nothing that could ever change that.

 She has taught me how to keep going when it would just be so much easier to stand still.

She is my sister and I love her fiercely

 She strives every day to take care of those who matter to her and I am beyond blessed that my family and I are among them.

Call your sisters ;) ;)

Take good care my friends & God Bless <3