Monday, November 9, 2015


Recently, while thinking about Thanksgiving approaching, I was feeling blessed for my beautiful family and wonderful friends.  And that led me to begin thinking about all of the many things I am thankful for.  So, I decided that I would write a list of 27 things I am thankful for...one for each day of November leading up to and including the big feast...plus an extra!! Please note...these are not necessarily listed in ranked order!

1.  My husband, Prince Charming, who has been the love of my life since high school (that would be 23.5 years as of this writing).  We have made it through thick and thin. We've celebrated each other's successes, supported each other through difficult times, and have begun a beautiful family together. He is a very hard worker and I am proud of all that he has become.

2.  My smart, sweet, and beautiful daughter, Little Miss, who blows my mind with her math skills and performing talent. She may keep me on my toes at times, but she is an amazing little girl who has a heart of gold (standing over my shoulder, she tells me she wants me to write diamond instead of gold).  Ahhhhh, my princess!

3. Chub-Chub. He is an energetic, silly, loving, little "big" boy. He loooooves to play with his cars!  I don't think there is a single square foot of our house and car that don't have a hot wheels hidden somewhere. He is my shadow and loves to "nuggle" with me.

4.  I'm thankful for Miracle Man.  I'm incredibly humbled and grateful to have him in our lives.  Having almost lost him when he was 7 weeks old, we give thanks each and every day that he smiles upon us. He is silly, giggly, and loving. He loves our dog, Boomer, more than anything in the world, and Boomer is incredibly tolerant of him.  We love watching him make amazing gains in his development. He truly is our Miracle Man!

5.  My mother, who has shown me a different side of her than I ever knew before.  She has been a great support to me recently.  Having had a strained relationship in the past, the effort she has made to reunite us has been incredible.  I am thankful for the love she has shown me. And I am thankful for the beginning of a new chapter in our lives together.

6.  My dearest friend, Dee, who has been my rock for many years.  I could not have survived the past 4 years without her constant support and love.  Even as she battles cancer, she still takes care of me and my family. I think she is applying for sainthood sometime soon.

7.  My little sister, who has shown me love and support through very trying times. I can't even count the number of times she has been to the hospital with me and my children this year.

8. My little brother, aka Lil' Bro. He's hilarious, and sweet...and very loving.  Although he lives far away from me (waaaayyyy too far), and I haven't seen him in 3 years...and despite his own busy life, he still manages to offer me his love and support. Plus, he idolizes me! 'Nuf said!

9. My older brother and his family. We've shared some wonderful times together over the years. I just wish they didn't live on another continent. It makes it super hard to visit!

10. All of my sisters-in-law, brothers-in-law, nieces, nephews, aunts, uncles, other family members.  Each of them have shown me kindness and love over the years.

11. Boomer, my first dog.  He is incredibly sweet and patient.  I love how his big butt wiggles along with his tail when he's happy.

12.  Kallie, the first dog I've raised from a puppy.  She is just what I needed.  Her companionship and love mean the world to me.

13.  My friends, many of whom are reading this right now.  How could I not be grateful for the love, time, support, and special moments we've shared? You've all contributed to my journey...sometimes in ways you cannot even imagine. Kindness given and received infiltrates the soul.  This is what you have done for me.

14.  Cheetos.  The crunch.  The cheese.  What's not to love?

15.  My kittens, Komet and Kupid, who have moved right into our lives and our hearts.  They are non-stop purring machines that love to cuddle.  They came to us at a difficult time and helped fill a void.

16.  My Ipad.  I know it's a material thing, but this material thing has given me countless hours of entertainment and knowledge on the days when my fatigue and pain mean that all I can do is hold down the couch.

17.  My bed.  It is incredibly comfortable. Sometimes it is the only place where I can get comfortable.

18.  My home.  It may not be the nicest, biggest home in the world, but it's ours. And it is filled with love.  It is also our sanctuary from the crazy outside world.

19.  My readers.  There may be only 2 of you, but I'm grateful for that!  Thank you for your support!  You're AWESOME!!

20.  When my children listen and follow directions. 'Cuz that's like...never.

21.  My health.  Despite the challenges I face, it could be worse!  I am thankful that it's not.  Hey, I'm seeing the glass half-full!

22.  Movie nights.  When the whole family is hanging together, "nuggling". Plus...the kids aren't fighting or running around the house screaming like wild banshees!  BONUS!!

23.  My neighborhood. There are many wonderful people living here!  I am having a blast getting to know our neighbors over the past several years.

24.  Random strangers at the store.  'Cuz sometimes, a lady just needs to talk to SOMEONE!  ANYONE!! Especially someone taller than 42 inches!

25.  Books! Tangible old-school books, eBooks, audiobooks, hard cover, soft cover, picture books, non-fiction, fiction, you name it.  I am grateful for the authors who can transport me into another world and teach me things I did not know. 

26. Music.  It fills my soul. It can heal me, calm me, pump me up.  It can ease my troubles, and bring such joy!  I love to watch my kiddles dancing to music!  That is truly one of the most enjoyable moments I experience as a parent of young'uns.

27.  Hot showers.  The warmth radiating over my aching body soothes me like nothing else can. I only wish my hot water lasted longer, and my energy wasn't zapped each time I take one. But I truly am grateful for this fabulous remedy.

Twenty-seven things is a long list, but at the same time, it's hard to narrow down the people, places, and things I am grateful for to only that many.  I challenge you to try it, too!  There really are many wondrous people and things in our lives. 

Gratefully yours,

Marathon Momma

Sunday, November 1, 2015

This is Halloween, Halloween, Halloween!

Halloween has been my favorite holiday since 1976. The day I was born. OK, maybe not that long...since I wasn't aware of anything for a few years yet. Still, I have always loved Halloween. I was the girl who continued to trick-or-treat all through high school. And into college, I still wore costumes. Then it was time to start having Halloween parties while I was in grad school and that continued through until I had the twins. I have always decorated to the nines for my favorite holiday. I have more decorations for Halloween than for Christmas...and we're talking like six or seven giant bins! The fun and excitement of Halloween has always captured my heart, and the child in me never gave it up.

This year, was a little different, though. I was feeling overwhelmed, my body has been in pain, and I was feeling depressed. Although I felt guilty about it, I didn't decorate or do any of my usual fall or Halloween activities with my children. Last weekend, we did finally go buy our pumpkins. But I didn't have the energy or desire to carve them. I had purchased the boys costumes ahead of time, but not Little Miss's. That ended up being fine, because she decided she wanted to be a rockstar, anyway. And we already had things around the house that we could use to pull together a costume for her. So that worked out fine.

As Halloween was nearing this week, and Little Miss kept asking to carve her pumpkin, I finally relented and spent Thursday evening doing that with the children. Well, sort of. Little Miss carved her own and she did a great job! 

The boys well, they didn't really want to have much to do with it. Chub-Chub did try to carve a little and scoop out some of the pulp and seeds. 

But Miracle Man didn't want to even touch the pumpkin guts! It totally freaked him out! He did, however, take the stem off!

So basically, I carved three pumpkins-mine and the boys's!! Here they all are:

Little Miss's is the bottom left pumpkin.

So, there. We carved the pumpkins. But we still didn't have any decorations up. The kids kept asking if we could go ahead and put them up, and so I figured that we would do that on Friday. Sure, there would be only one day left before Halloween, but at least it was a day before and not the day after! Besides, I decided I would only pull out a few things so that it wouldn't be as exhausting and as much work for me.

Friday night came (all too quickly)! And there we were, pulling out the Halloween decorations. All of a sudden, MiracleMan  started running around the house shrieking, "Aahhhh! It's a spider! Aahhhh!!" He had pulled out one of my furry spiders and was so thrilled with the thing that he was making a huge deal out of it!

And it was at that moment that I realized that I had to do this for my children. No matter how terrible I felt. It was important to them. And they loved it!

The more they all screamed and shreiked and got excited, the more I kept pulling out and hanging up. Miracle Man's excitement especially continued to escalate! He grabbed my phone and started snapping pictures. He's a budding photographer (wink, wink). Here's a sample of his work:

They almost look like pics from a horror movie, don't they!?

Chub-chub was fun, too. His excitement for the night was setting up my giant skeleton that stands over 6 feet tall and says things when you walk past him. I set him up inside the house on Friday, but on Saturday I put him outside the house where the trick-or-treaters would be walking past. Mwahahahaha!!!!

Chub-chub couldn't wait to open the box and put him together, but once he heard the skeleton speaking, he wanted me to put him back in the box! Immediately!! Which I did NOT do! Of course, that doesn't quite compare to our dog, Kallie's, reaction. She was quite unnerved by this giant skeleton man! She wouldn't stop barking at him!! I had to turn him off and "introduce" him to her. She did eventually get used to him last night and all was well.

So, in the end, we had a great time, even if I got to the point where I was flat-out exhausted! The kids were thrilled to have decorations up for Halloween! And I was grateful to them for bringing me back some of my Halloween joy. 

When Saturday finally dawned, I couldn't wait to take them trick-or-treating! We cleaned a little bit and prepared some food, as we also got ready for trick-or-treaters. The boys took their afternoon nap, and once they woke up, it was time for costumes! :-) The boys were firemen, and Little Miss was her rockstar costume. She was too cold in it, though, so she covered up with her jacket. Kallie was a bumble bee, and I was a "good" witch (though some might argue that point). Prince Charming pulled out his cow costume that we got for him many years ago. Our whole family was ready to go!

We had a nice evening, walking, chatting with neighbors...and the kids brought home a ton of candy for us! Oops! I mean for themselves....yeah, themselves!

Today, I'm a train wreck. Every single part of my body hurts. And I am feeling incredibly fatigued. I didn't really move around the house much today at all. But, I am thrilled that I had enough energy yesterday so that I could enjoy trick-or-treating with my children! 

And in the end, I'm grateful to my children for reminding me, once again, that this is all about them. And I have to push through my pain, exhaustion, and depression, for them! They need me. They need me to show them how to have fun and how to celebrate holidays. They need me to teach them that it's OK to still be young and not have to shoulder any adult burdens. They need their momma to be who she used to be...even if only for a day!! I'm thankful for my kiddles...in some new ways, even.

Feeling blessed,

Marathon Momma 

Wednesday, October 28, 2015

Geocaching Inside My House

My kids and I love to go geocaching and letterboxing.  It is a wonderful family activity that gets us outside and exploring new places and things.  The thrill of the hunt and the excitement of locating the treasures keeps us coming back for more.  Not surprisingly, Little Miss loves geocaching and letterboxing the most out of all of my kiddles.  Naturally, she is at the perfect age for hiking trips deep into the woods.  And at her age, she understands the process the best.  It can be difficult taking the boys on one of these expeditions, though.  Chub-Chub loves to find treasures and is quite the willing participant, but he is still a toddler and, as such, can be challenging to reign in on long nature walks.  Miracle Man is an entirely different story.  He gets too hot or too cold...and cranky very easily.  He tires sooner than his siblings, and he gets easily distracted.  As for me, chasing after two toddlers while trying to keep up with Little Miss is painful and exhausting for me at the moment. Long story short, we don't go letterboxing or geocaching nearly as often as we would like to.  In fact, as the boys have gotten older (and less easily confined to their stroller), we have gone on fewer and fewer of these types of hunts (and none for this year).  I am sure that, with time, it will get easier and we will be able to geocache and letterbox all over the place once again.

Lucky for me, I recently discovered that each day I do my own treasure hunting of sorts.  When I vacuum.  Of course there is the usual dirt, dust, cat hair, dog hair, etc.  But each time I vacuum, I am always surprised at what is lurking in the nooks and crannies of my house a mere day after the last time I plugged it in and began a search.  So while I cannot go on geocaching outings as often as I would like,  I take comfort in knowing that each day, there will be a new cache to find right inside my own home with my favorite machine, the vacuum.

Here is a list of the top 10 most interesting items found in today's vacuum cache:

10.  Cheerios...yes, AGAIN! Today's location:  the couch.  Because everyone knows that you simply cannot watch the Smurf movie without cheerios, mommy.

9.  A tiny leaf...I'm not quite sure how that got into the living room.  Are we growing a tree inside our house?  Am I that oblivious to the sheer number of living things in our home that I did not notice an entire tree growing in here??  Alas! It's gone now, anyway!

8.  A black olive...so glad it was in the kitchen where it belonged at least!

7.   Kitty litter...always, always, always.  Today, though, it wasn't just scattered pieces kicked off paws from jumping out of the litter box.  Nooooooo, today, there was a whole pile of litter next to the litter box (obviously in an attempt to cover up a stinky floor tile).

6.   Dried up playdough.  Of course.

5.  A paperclip...ummmm, do we even USE those in the house?  I can't remember the last time I took out a paperclip.

4.  An earring backing...we should own stock in the company that makes these things!

3.  A feather.  Nope, we do NOT, nor will we EVER own any kind of bird!  NEVER!!!  Did the cat bring it in the house, then?  And, if so, where IS the rest of what used to be attached to said feather????  YIKES!

2.  A turquoise, high heeled Barbie shoe...I guess her prince won't be able to see if the shoe fits her now!

1.   A cheese stick wrapper.  On.the.floor.  (Oh no you didn't!)  Now, I KNOW that none of my children would ever throw their wrapper right on the floor.  There must be some logical  explanation for this.  Like:  Chub-Chub's arm broke off and was swallowed up by the dog just as he was about to put the wrapper in the garbage maybe? Or perhaps Miracle Man tripped over a giant elephant with pink polka dots on his way to throw it out, and that caused him to miss the garbage can completely? No, these stories could not be true you say? Then what the ever-loving-heck caused the cheese stick wrapper to end up on the freaking floor for crying-out-loud? A child carelessly dropped it?  Nahhhhh!  That's too far-fetched for sure!

Well, there you have it.  My cache for the day!  I can't wait to see what tomorrow brings!

Yours in geocaching,
Marathon Momma

Tuesday, October 27, 2015

In a Nutshell

It's been a while again since my last post.  It's been hectic in our household. Miracle Man and Chub-Chub have turned four and Little Miss has turned nine. We lost our beloved doggie, Khloe, unexpectedly and suddenly. Prince Charming is working around-the-clock, and his business is doing well. Miracle Man is making good progress in his school program, Chub-Chub loves being a big boy now, and Little Miss is thriving in school! Phew!! That's the shortest update I think I've ever written!

As for me, well, I continue to receive diagnoses. "Woohoo!" (She says sarcastically!) And with another one potentially on the way, sometimes it feels like the diagnoses just won't stop coming! 

Daily, fatigue remains a fire-breathing-dragon chasing me down and often incinerating me. Yesterday I was so fatigued, for instance, that I took not one, but TWO long naps!!! The changing weather definitely effects my pain and fatigue. I am trying to live in the moment, acknowledging my body's needs with acceptance and flexibility. It can be frustrating, though, especially when it comes to my children. I feel like I am missing out on a lot with them due to the fatigue in particular...especially all the little moments. On the days when I have more energy, I try to make it a point to do things with them that will be memorable and enriching.

I've recently begun to learn about meditation and mindfulness to help me cope with the emotional aspects of living with these illnesses. I haven't gotten very much into it yet, having only read one book and tried meditating just once so far. I struggled with the intense focus required during that meditation because the pain factor was kicking in. My shoulders and back were aching and I had stabbing pains while I was sitting on the floor. I'm hoping that when I try it again, I won't be experiencing the pain. 

I have also begun following the FODMAP diet on my doctor's orders, which is similar in some ways to the Paleo diet, only more strict. For example, I have had to eliminate garlic and onions from my diet! Imagine that!! Try cooking without garlic!! It's a feat unto itself!! Though, I have to say that I am getting used to it by now, since I've been on the diet for several months. But sometimes it does feel like SUFFERING! Lol

That's about it in a nutshell...feel free to leave a comment below...especially if you have experience with the FODMAP diet, as I'd love some more tips!

Garlic-less yours,
Marathon Momma

P.S. No vampires are welcome in my house! ;)

Sunday, March 29, 2015

The Bus Stops Here

I was driving by a bus stop today and started thinking to myself...I could park my car in the parking lot........get on the bus........and go somewhere....Forever. I could leave behind this life that, at the moment (a very long moment), I feel like I merely........exist.........in.

I actually started plotting out my escape as I was driving further down the road. I could get on one bus, take it somewhere, anywhere. Then, transfer to another one, and make my way down to Tennessee to visit my brother, whom I have not seen in 3 years. From there, I would go down even further south, like Florida, perhaps...where it's warmer and the cold and damp wouldn't hurt my body so much. Of course, it is damp there, though. Or maybe I could head over to California. I would love to go back to San Diego sometime! I could travel. Alone. Without anybody. I've done it before. I could do it again. I don't need anything.  There are soooooo many places I could go! And there would be so much freedom! And...quiet. Ahhh, yes! Quiet.

But I've never been a quitter. One of my favorite songs has always been Simon and Garfunkel's, "The Boxer." There's a line in it that says, "In the clearing stands a boxer, and a fighter by his trade. And he carries a reminder of every club that laid him down or cut him till he cried out, in his anger and his shame, 'I am leaving, I am leaving,' but the fighter still remains." I had wanted that to be my yearbook quote when I was a senior in high school, because that was, and is me. Even despite it all, and despite any complaining, I always stick it out, push through it, and fight for what I believe is right. Unfortunately, that quote that was so near and dear to me was too long to fit in the eensy weensy space below my photograph in the yearbook, so I couldn't use it.  I ended up choosing another line from a different song, by the way...this time by the Beatles. "Here comes the sun."

Life has never been easy for me. I grew up in a broken home, emotionally abused, physically abused, neglected. I overcame obstacles that were insurmountable. I went to college, graduated with honors; then went on to graduate school and got my Masters...with a 3.9 GPA. I made something of myself. I followed all the rules. I did everything I was supposed to. And I never, ever quit. I always took a difficult situation as a challenge...and overcame it. But I never, no never quit. So I will not quit now. But damn, it sure sounds easier!  And where did all this goody-two-shoeing get me in the end? I've got this horrible illness that nobody understands, some people don't believe, and it is debilitating. I can't work. I can't use my degree that I worked so hard for (and am still paying on). I don't get to enjoy the career I longed for and loved. I don't get to really and truly live life and enjoy it. I feel like I've been robbed of the life and future I worked so hard to earn. And I feel like my children are being robbed of the mother they deserve.

Maybe instead of being a rule-follower, from now on I should be a rule-breaker? Hmmm....thinking...thinking...

Wondering if I really could rebel,
Marathon Momma

P.S. Just in case I do end up a "missing person," please don't tell 'em where I am! ;)
P.P.S. It is also true that I wouldn't make it very far in my travels with this crappy body that I have now.

Tuesday, March 24, 2015

Behavioral Specialist Through Family Support Services

In yesterday's post, I gave a very general overview of how the Medicaid Waiver Program works. There are many, many more details, but I doubt you want me to get into the nitty-gritty, eh? (No, I'm not Canadian...I just like to pretend to be every now and then!) Anyway, I found out today that we are looking to mail out our application in the middle of April sometime. So there is an end in sight! :)

Today I want to discuss something called Family Support Services.Family Support   Services are another avenue through which a family who has a child with disabilities can receive outside support. To receive Family Support Services (FSS), you do not need to have Medicaid or a Medicaid Waiver. I am still learning a lot about FSS, so by no means am I an expert on it. Basically what it is, though, is a program through which you can apply to different agencies for different things like emergency respite and some different material items that might be beneficial to your family to have in your home.  Now, you can get the material items through the Medicaid Waiver, as well, but if you don't qualify for Medicaid or a Medicaid Waiver, this is one more opportunity to seek out assistance. 

There are also programs funded by FSS that agencies run to help families such as ours with things like challenging behavior. I found out about the Behavior Support Program offered through our Medicaid Service Coordination agency.  With all of the challenging behaviors that I see at home, I knew this would be beneficial to us. Again, this is another waitlisted type of service. I was put on the waitlist forthe Behavior Support Program back in June, and we just finally started working with the behavioral specialist last week.

Typically, I guess the Behavioral Support Program works differently than we are receiving it at this time, however the professional who runs the program is pregnant and since her maternity leave would interrupt the flow of the normal program, they are offering me a different option that is a shorter length of time. With this option, I am being taught how to target specific behaviors and figure out the meaning behind them. For my education and therapy friends, you may know it as an Applied Behavior Analysis.

What it is, is a very scientific way of approaching the challenging behaviors we see from Miracle Man. Last week, the behavioral specialist and I met for three hours and she talked with me about Miracle Man's needs and explained to me how the program works. We also chose three specific behaviors to target during our seven-week session.

One of the behaviors I chose to focus on was Miracle Man's meltdowns. They can be very disruptive to the flow of the household. At times, they can continue for an entire evening (so 2 to 3 hours of non-stop screaming..sound like fun? Yeah, me neither.)  Another behavior that I chose to focus on is his destruction of property. He likes to cut, rip, tear, and destroy all sorts of things. He also likes to draw on anything...except paper. Lastly, I chose to address his issue of "improper elimination". Basically...he removes his diapers after they have been peed or pooped in. Sometimes he likes to play with his poop...those of you who are close to me may recall my favorite line "poopy is not play dough".  Recently, he has also decided to do a little something that I would like to call "squat and dump". He removed his diaper and went poop right in the middle of his bedroom floor...several times!! So, there is obviously a lot to work on in this area, as well. Now, when he does any of these targeted behaviors, they are not attention-seeking behaviors. They are meeting some other need within him, and that, folks, is what we are trying to figure out (and the purpose of doing this Applied Behavior Analysis).

Last week's "homework" for me after our first meeting with the behavior specialist was to track as many of these specific behaviors as I could. I had to fill out a chart where I briefly described what happened before the incident, what happened during the incident, and what happened after the incident. I also had to fill out a form called a Motivation Assessment Scale. This Scale essentially tries to break down the three target behaviors into what it is that he is getting out of doing them. For example, is it a sensory-based behavior, is he looking to "escape", is he seeking attention, or is there some tangible reason for it? We found that one of the behaviors is more tangible. And that was the meltdowns. He has a very difficult time transitioning between activities. In particular, transitioning between being asleep and being awake. So that would be considered a "tangible" reason behind the meltdown behavior.

This week, we met yesterday and discussed the results of last week's notetaking, as well as the plan for this coming week. I am actually quite excited to try this week's "homework"! We will be doing a Preference Assessment. This means that we will be looking at preferred items or activities, and preferred foods that Miracle Man seems to enjoy the most. I was surprised to learn what it actually meant to do this. I had assumed that meant that we would figure out what his favorite thing was and then use that every time to encourage better behavior. As I explain below, however, that is not quite how it works.

I will explain to you what we will be doing with the Preferred Foods Assessment before I explain the Preferred Items Assessment, because we all love and can understand food...am I right? So, a Preferred Foods Assessment, as you may have guessed, is geared towards figuring out what food, "reward", if you will, Miracle Man would be most motivated by, as well as which of his favorite treats are least motivating. I chose six different foods: mini marshmallows, M&Ms, Skittles, Reese's Pieces, Pringles, and Combos. The foods have to be something that he will like a lot, but they cannot be something that he eats routinely. I have to be able to withhold the food and only give it to him when he has cooperated fully. Now, Miracle Man's favorite food happens to be hummus. With pretzels.  But, if I withheld that until he cooperated fully, he would never eat! So the choices needed to be highly preferred, small, easy, and manageable "treats", rather than real foods that he already eats during meal times.

Later today, the behavioral specialist is actually coming to do the assessment with us because she is curious and interested in seeing how it goes. Also, she has not yet met Miracle Man, so this is a perfect opportunity for her to do so. What we will do is to sit down across from Miracle Man with all six food items on the side. I will pick up one mini marshmallow and one M&M and present them to him at the same time. I will tell him he can choose one. Whichever one he chooses first is the preferred treat. I will mark down on paper which treat he chose. Then I will take one M&M and one Reese's Pieces and present them to him to choose again. Having six different foods, we have to do this trial with all possible combinations in a systematic way. So next, I might take an M&M and a skittle and present both of them to him. Throughout this process, I will be keeping track of what treat he prefers each time in order to find out what he prefers the most. And then I will create a hierarchical list of the treats according to Miracle Man's preferences so that I can use them appropriately to reinforce good behavior. I cannot wait to see what treats he is most motivated by! It will be fun!

Now, the interesting part of this that the behavior specialist explained to me is that when I am trying to get him to cooperate with me throughout the week, I will offer him his least favorite treat as a reinforcement first. The goal behind this theory is to get him to cooperate fully--without needing his absolute favorite reward    every.single.time     he is asked to do something.

Now, the Tangible Item Preference Assessment is set up so that I choose six different things or activities that he likes to do--that are not things he uses all the time. It has to be something that I can remove (just like the treats), and only give to him as a reinforcer. So, his toy electronic smart phone that we use to get him to go on the bus in the morning (every morning) is not the best choice.

I chose stickers because he always goes into my craft drawers to take my stickers out...and put them all over our furniture. But perhaps, if he is earning stickers in a more controlled way, it will be highly motivating to him (and also safer for our furniture)??? That's my plan, anyway!  I also chose bubbles, because I thought it would be kind of fun to reward him with a quick bubble game or activity after behaving accordingly. Miracle Man loves music, so the next item I chose was allowing him to listen to his favorite song on my iPod. And for the fourth item, I chose to sing a song of his choice together. Typically, Miracle Man will stand in the middle of our kitchen and sing songs over and over...and over again. Sometimes, I sing with him, sometimes I don't. Sometimes he wants me to sing with them, other times he doesn't. But, if I offer it as a reward, maybe he would like to sing with me? We shall see! The fifth item I chose was for him to be able to choose a TV show that he could watch as a reward. And the sixth item was to be tickled. He loooooooves to be tickled, and I mean loooooooves it!  He often asks to be tickled! He is so adorable when he giggles!!

After we figure out his preferences for these items, we will then be able to start talking about plans for approaching his challenging behaviors...and tying in his preferred reinforcers. I am not sure yet exactly how that will look, but the behavioral specialist did explain that because Miracle Man understands "first, then" already, we will be using a lot of "first, then" approaches. For example, first he has to pick up his toys, then he can choose a TV show. Or, first he must eat his dinner, then he can have an M&M. 

Regardless of what preferences Miracle Man ends up having, this is going to be an exciting afternoon here!  It's like my own positive reinforcer!

Wishing you many positive reinforcers today,
Marathon Momma

Monday, March 23, 2015

State Services for Miracle Man

For about the past year I have been working on getting Miracle Man services through our state. He already receives services through the local channels, and attends a special education preschool program. He goes there every day for about 4 1/2 hours. While he is there, he receives many different therapies daily and throughout each week. Those therapies are all geared towards helping him grow socially, cognitively, and physically.

At the state level, there are programs out there that can assist him in ways that are above and beyond the scope of the educational program. One of the ways our state helps families who have children with disabilities is a Medicaid Service Program. I am not sure how it works in other states, only how I am experiencing it in my state.

In any case, through the Medicaid Service Program, children with disabilities whose families are at a certain income level can receive the state services and programs.  If you do not meet income eligibility, however, there is another option in order to receive services for your child at the state level. This is called a Medicaid Waiver Program. To receive any kind of service through this avenue, you first have to apply for the Medicaid Waiver.

I started this process in the spring time of last year. It is quite a lengthy process, but once we get through it and can start receiving services, it will totally be worth it! So the first thing you need to do in my state is go through a "front door" program. When I did this, it was before they implemented new regulations. I got in just in the nick of time. From what I hear, it is quite cumbersome now. In any case, for me the "front door" program consisted of meeting with somebody from the Office for People with Developmental Disabilities (OPWDD). At the meeting, the gentleman that I spoke with gave me paperwork and outlined for me a basic idea of what the program can do. After that, I was sent on my merry way to start contacting agencies that provide Medicaid Services and get a Medicaid Service Coordinator.

The Medicaid Service Coordinator does 90% of the paperwork, with my assistance. Sometimes acquiring a Medicaid Service Coordinator is challenging, especially for the younger children. I called around to several agencies and asked to have a Medicaid Service Coordinator, but many of them didn't have any availability. At the agency that I'm with now, I was actually put on a waiting list initially.

Every time you contact an agency to acquire a Medicaid Service Coordinator, the intake person gathers information about your child to see if their agency can support your child and service her or him properly. So for each agency I called, it meant that I would be spending at least an hour on the phone talking with the intake person explaining Miracle Man's complete social and medical history. And at the agencies where I went a little bit further, I then had to repeat the entire same story with another person.  I spent quite a bit of time on the phone in the summer and then again in the fall. 

In the end, the agency we were waitlisted at was really the best fit our family.  Luckily, by the time I had done some of the legwork with the other agencies, our agency had an opening for us. And, for those of you in the "know", I never actually got as far as the start of the application with any of the other agencies.  It was just a lot of bureaucratic red tape.
So all of these things take time, and several months later, in the middle of the fall, I was assigned a Medicaid Service Coordinator who would help me get the Medicaid Waiver application completed and sent out to the state. I've been working with this lovely woman for the past several months. She fills out all of the paperwork, but we meet several times for several hours each time...going over history, medical needs, social needs, everything that has to do with our little guy. Then she goes back to her office and fills out all of the paperwork.  She then contacts me with changes that need to be made, or questions that she has. I believe that we are nearing the end of the application process, and then we will be sending it in and waiting to hear back from the state.

Once the application is approved, it will still take some time before we can start receiving some of the services that we are seeking to meet Miracle Man's needs. I can't wait until that happens! One of the things that we will receive is some respite. But, it is going to be several more months before all of that can take place. I will explain how respite works in another post.

For now, though, I am in pain, and completely exhausted, so it's off to bed for me. It was a long, very challenging day. Good night all!

Wishing you wonderful dreams,
Marathon Momma

Sunday, March 22, 2015

Straight on 'til Morning

I went to my daughter's play last night. It was adorable! She is in Peter Pan. The set, the costumes, the props, and the actors are all amazing! What a treat to see my daughter smiling so much! She did a super job in her role as a fairy. So cute!

My stupid fibromyalgia, however, really flared up during the performance. I had pain in my back, my tailbone, my legs, and my hips. I got very stiff and achy sitting there. But the worst part was in my upper body. My right shoulder and neck had stabbing pain that radiated all the way down through my arm into my wrist. It hurt so badly I just wanted to cry. I had Prince Charming massage my arm a little bit while I was sitting there, but it didn't really relieve the pain. What I really needed was some meds, but I didn't have any on me. I am going to have to remember to carry some in my purse at all times. 

As much as I enjoyed the play, I was grateful when it was over so that I could go home. It was difficult to get to sleep last night with the pain. But eventually I did, and I slept like a rock. These outings really take all of my energy. It's 10 AM and I still haven't moved to get out of bed. The fatigue of Fibro really sucks. 

Hoping for a pain-free day (despite the fatigue),
Marathon Momma

Saturday, March 14, 2015

Done With the ER

So, it was about 12:30 AM before I finally saw the doctor in the ER yesterday...That would be about 11 hours after I arrived. When I finally saw the doctor at that point, I had a terrible migraine. I was so beside myself I was actually crying to the doctor about how much pain I was in and how terribly I felt they treated me.

Somewhere around 9 PM, I had finally asked the nurse for Tylenol, just to take the edge off the migraine throughout the evening, but they couldn't do anything for me until I saw the doc. I couldn't have anything to drink, and I was in the middle of the hallway right underneath the florescence lights. I did what I could to cover my eyes from the brightness, but I was just in so much pain. By the time the docs saw me, I hadn't had anything to drink in 11 hours. When I spoke with doctor, she decided that I probably was dehydrated, and luckily she did have the sense to realize that they had exacerbated the whole problem.

When I had left the urgent care center, the doctor there thought that I might have vertigo. But because of my EKG, she wanted me to get my heart checked out more. When I arrived at the ER, they did do another EKG, which the doc that I spoke with at 12:30 AM finally said that it did come out normal. But because of my migraine and because of my now dehydration, that was what she focused on. She never did look into my ears to check to see if there are indeed was fluid, like urgent care had said. And she never did address the vertigo issue. Pretty much, she treated the symptoms for the migraine and the dehydration.

The good news is, though, that she did say that one of the medications I'm on does create dehydration if you don't stay on top of your fluids. She said that you have to drink way more than you actually would normally have to because of the way the medication works. So, it very well could have been dehydration that caused the dizzy feeling I was having. I think that the whole experience, though, which I likened to a form of torture, made it difficult for me to trust that she knew what she was talking about.

In any case, she decided the plan would be to pump me with fluids and to get me medication ASAP. She even agreed that what had happened to me was unacceptable. When she left the side of my bed, she said she was going straight over to put the orders in to get the blood work going, and get me on the fluids and pain meds. So I covered my head back up to avoid the light, and waited. It was at least another hour before she was walking by in the hall again and noticed that I didn't have an IV.  She said that it was completely unacceptable and went back down the hall to go get somebody to get the fluids and meds immediately.

So I was probably hooked up to fluids and meds sometime around 2:30 a.m. By then I was sooooo exhausted. As soon as the pain meds were administered, I was moved out of the center hallway into a curtained off area where the lights could be dimmed and I was finally able to relax a little bit to catch some sleep here and there throughout the night.

At some point in the middle of the night, the doctor came back to me to talk about the results of the blood work and she said that everything came back normal. She was going with the diagnosis of dehydration. At that point, I was so woozy from the medicine they gave me to stop the migraine, that I couldn't quite think straight to ask my questions. Of course, now I have many questions, but it's too late. I am going to follow up with my primary care doc, though, and see if I can get some of my questions answered by her.

Once I woke up this morning, they told me that I could leave whenever I was ready to leave. I couldn't wait to get the heck out of there! I called Prince Charming and he got the kids up and dressed, shuffled them into the car, and then came to the hospital to get me. I still had to go and get my car from the urgent care center where it was left yesterday, but that was easy enough.

When I finally got home, I rested on and off while the kids watched some TV. My mother's helper came in the afternoon for a couple of hours to help with the kids and a couple of light chores, which was a huge help to me today. I'm finally starting to feel a little bit more like myself. However, I definitely still need to catch up on some more rest. Tonight was a takeout night, for sure!

Grateful for your support,
Marathon Momma

Friday, March 13, 2015

Lovin' Me Some ER time!

Today hasn't been the best of days. It started out alright...except for that it was a Friday (I'm currently working on a post about Friday's...look for it soon!). 

After I got all the kids out the door and drove Chub-Chub to school, I needed to make a couple of stops. Simple things...like running into the post office to get stamps (which I wouldn't have done with the boys in tow--or god for bid--all three kids)...and grabbing a gift for somebody. So I took care of those errands, and realized that I was hungry. My energy was already severely depleted, so I decided to drive through the Bruegger's nearby and grab a bagel sandwich, rather than attempt to walk in there on foot. 

After they handed me my order, I pulled over into the parking lot next to Walmart to enjoy the lovely flavors of my tarragon chicken salad sandwich. While I was sitting there in my car eating, I noticed that I was getting really dizzy and just felt awful. 

I have been getting dizziness a bit frequently lately. Over the past several weeks, I have had to sit back down several times when I've been trying to stand up. It's been something I've been concerned about because my doctor is monitoring my blood pressure right now (I have been prehypertensive). And last night, while I was laying down to go to bed, I got really dizzy and decided to take my blood pressure. It ended up being pretty high, so I was planning on calling my doctor today about it anyway.

Ok...getting back to this morning...so given my overwhelming fatigue, pain, and blood pressure for the week, I did not have much on my agenda that I needed to accomplish today. I wanted to get back to the house and rest. But the errands that I ran this morning had to be done today. They just couldn't wait. 

So there I was, sitting in my car...getting dizzy, and feeling worse and worse by the second. I decided that I should find a place to take my blood pressure. Walmart used to have a cuff right near the pharmacy, so despite the fatigue, I climbed down out of my ginormous vehicle and walked in there.  I looked around the pharmacy, but couldn't find the blood-pressure cuff. Realizing how terribly I felt from walking around, I decided that it would be best to get some help so that I could hopefully get my blood pressure taken immediately. I had to wait in line to ask someone in the pharmacy about it, and by the time it was my turn, I felt like I was going to pass out. Unfortunately, the pharmacist said there wasn't a blood pressure monitor anymore.

I walked back out to my car and called my doctor's office. Since it is nearby, I was hoping that maybe they would tell me to come right over and just take my blood pressure. But, given the symptoms that I had, they told me to go right to urgent care if I believed I could make it there...or call 911 and have the ambulance meet me in the parking lot. 

I drove right over to urgent care, which was only a three minute ride or so. And they got me right in and started taking care of me. They took my blood pressure, which was higher than normal, but not as high as it was last night. They did a blood sugar test, which came out normal.

And then they did an EKG. They noticed that my EKG had a change in it from my last EKG only a month or two ago.

After getting those results, they decided that it would be best if I headed to the ER. But of course, being dizzy, they wouldn't let me drive. I was lucky enough to find someone to drive me, andPrince  Charming was able to go home and take care of the kids. 

Tonight is a big night for our Little Miss, who is performing in her school's talent show. She is doing a solo act of headstands and dancing to Taylor Swift's Shake It Off. I am terribly sad that I'm missing it. :(

Anyway, I got to the ER sometime around 1 PM this afternoon. I'm going to be here all night, as I have only seen the nurse so far and the doctor will want to run tests. So here I lay on the stretcher, in the middle of the hospital ER hallway, six hours after arriving. With no end in sight. 

It's a good thing I can make friends anywhere!

Hoping your night is going better than mine,
Marathon Momma

Thursday, March 12, 2015

The Sound of Silence

A rough several months have gone by without a post from me. I think I should probably explain why I don't write very often. You see, I have always hated complaining. For me, it's kind of like that saying, "If you don't have something nice to say, then don't say anything at all." While I do know that saying is not intended for this purpose, it still feels appropriate to me. When I'm having a flareup or things are really difficult and there are many challenging things happening, I don't want to keep writing about the negatives and how difficult things are.  So I usually try to write posts that are upbeat or uplifting in someway. Even if it was a difficult time, I try to find the positive in the situation or else I will try to write about something that I think is humorous. So when you don't hear from me for a while, it usually means that I'm not doing too well, and I'm having a difficult time finding something positive to write about.

The truth is, though, the last couple of months have been extremely difficult. Things of been crazy with Miracle Man, Little Miss, Chub Chub, and myself.

Miracle man is doing well in school in a lot of ways. He has made huge gains in several areas, especially with his speech. But we are still struggling with a lot of things as well. The good news is we are finally getting a chance to go to the Epilepsy Monitoring Unit at the local hospital. This is something that we have wanted to do for at least a year, and now we finally get to go.

The major catalyst for this opportunity is that Miracle Man had an episode while he was at school recently. He was sitting down at the table and the teacher's assistant was talking to him, but he wasn't responding. When she looked at him, his eyes were rolling into the back of his head. Next thing she knew, he had fallen off his chair and bumped his chin. This was the first type of seizure that we have seen where he didn't hit his head hard before having one. So, on the one hand, it's scarier and more frustrating that he had one without bumping his head first. But on the other hand, now we get to finally go to the Epilepsy Monitoring Unit and hopefully get at least one diagnosis. He is 3 and a half years old and he still does not have any diagnosis other than developmental delay, even though every one of his doctors believes he has several things going on. Having at least one diagnosis would be great!

We will be doing this in a few months. I do not have the appointment scheduled yet. I have to wait for them to call me. But, when we do get to go, this is how it works: I will take Miracle Man to the hospital and he and I will camp out there in the room. The entire time we are there, he will be hooked up to electrodes to run a long-term EEG. We will stay there for up to as long as a week. Hopefully we will get some concrete data to prove that he is having seizures during that week.

I am really glad that this whole experience will be in a month or two, and not right now. For those of you who don't know me well, or don't follow me on Facebook, my daughter was just in the hospital for a week. She had a pretty severe kidney infection. We are extremely grateful that she has healed well and is doing much better. She has to go to the urologist next week to have some testing done, and we are hoping that everything comes back normal.

In any case, it was a terribly difficult time on our family while she was in the hospital. It will be much easier the next time I am at the hospital with one of our children for a lengthy time because this time it will be planned. We will know far in advance that I will not be around at home to help out with all of the other kids and pets!

All of the stress and extra work over the past several months has really taken a toll on me. My body is barely making it through each day. I am extremely fatigued at this point. In fact, This week I have been struggling with getting out of bed pretty much at all. One morning, Prince Charming had to get everybody out the door without any of my help.  I simply couldn't get out of bed.

And my pain level has been high as well. Everything hurts. My legs, my ankles, my feet, my hips, my back, my arms, my shoulders, my hands, everything.

When I was in graduate school, I had developed carpal tunnel syndrome. I had to wear braces on my wrists for quite some time. But once I was out of school, everything resolved on it's own. I wasn't typing like a fiend anymore, so my wriss and forearms were able to relax. I haven't had this in a very long time. It's been about 15 years, actually. But, now it seems to be back with a vengeance. My wrists and forearms are so bad right now, I'm having trouble holding anything even as heavy as my phone. I am also having trouble writing, twisting knobs, grabbing at things, and of course typing. This entire post has been dictated so that I wouldn't have to type. Buckling car seats are a particular challenge for me. I try to not have to go anywhere if it means I will have to buckle the boys into their car seats. It is really annoying, quite frankly.

So there's a little snippet of the difficulties, but I do have another positive! Over the last few weeks, I have found a whole community of people out there online who are suffering through fibromyalgia, just like me. I am making friends and connections through Facebook and other social media outlets. This has been extremely helpful to me. Knowing that I am not alone is just  huge. And reading my very own thoughts in other people's Facebook posts has been affirming. I cannot believe I didn't search for these forums before. But, I am extremely grateful that I have them now! And, by opening up to people, I have learned that there are people that I actually know who have this illness as well. I am looking forward to learning a lot from people who have been going through it longer than I have.

That's all for today. No more energy, no more time. I hope you're all having a good week! 😉

Follow by Email