Berryton Visit

Last week ... Wednesday to be exact ... Jocelyn and I went to visit her preschool. It actually made it the THIRD time we've "visited," but we spent over an hour in the classroom with all the other kids, the teacher and the two paras.

We arrived to the classroom between 8:45-9am, and of course we were the first ones there. I again wheeled Jocelyn around the room to see everything and to start getting familiar with a new environment.

She was a pretty happy camper right away.

{She looks mischievous to me here -- like, oh yea, this is MY classroom! haha}

Even though no one was there, no matter, we made ourselves at home and found some toys to play with. Sometimes its the simplest of things! :)

 

I of course had to take pictures of her classroom -- for memory sake I tell ya!!

{The colorful number/letter rug is a play area, the colored discs in a 1/2 circle is where they do "circle-time," the tables are where they do crafts/activities and then of course they have their own cute little locker/cubbies for all their stuff. Its a pretty big classroom for the most part, and that's a good thing because Jocie's wheelchair/equipment can take up some space!}

Even though they try to be tidy and organized, MANY parts of a classroom is simply not CVI (Cerebral Vision Impairment) friendly. :(

{So much clutter & overwhelming to me & I can see just fine!}

The Staff in the Class?

          Teacher: Lisa Baker

          Paras: Michele & Shelia

 

Number of Kids? 8 ... Boogs will make 9! :)

 

The Therapist that will work with Jocelyn?

          PT: David Fath

          OT: Shelle Werner

          SLP: Sarah Khan

 

Other Specialists?

          Nurse: Lorraine

          Vision: Phyllis Schmidt

          Hearing: Anne

 

That's A LOT of people huh? Yeah, I know.

 

The plan is for us to attend Tuesday's and Thursdays from 9am-11:45am for the remainder of the year. We only have about 1 1/2 months, or 14 total days {who's counting right?!}, but basically we will be simply getting our feet wet, getting to know the staff & kids, and for everyone to become acquainted and comfortable with Jocelyn.

 

Truth be told, I'm not even sure we will last the whole 2 1/2 hours each day. We are going to try, but with Jocelyn not EVER sleeping at night and her wanting to take her naps between 9-11am, it will be a challenge. This is a little off subject, but we will be visiting a sleep clinic on May 6th to see what we can do to help ALL of us get a better night's sleep.

 

I'm not living in a dream world - we are ALL nervous -- both staff and I! The staff has not had a kiddo with Jocelyn's needs in quite some time. Jocelyn is going to change the dynamics of the entire classroom and that's okay. It will be good for everyone, but it will definitely be an adjustment.

 

Jocelyn will receive 20mins of each therapy (ie PT/OT/SLP) during her preschool time. I know that doesn't seem like much, but we are only there for two days and for basically a total of 5-5 1/2 hours. Really, that's not very much when you count in a total of 1 hour of therapies, recess time, playing with the other kids {hopefully...she wasn't really "included" in the last preschool we tried}, learning, etc. And in case your wondering, yes, we will still continue our outside therapies (ie PT, speech, hippotherapy & aquatic therapy).

 

I am trying my best to be as optimistic as I possibly can. I think the staff, as well as myself, are all relieved that I will be in the classroom with Jocelyn. I'm not sure if I will be there for the rest of the school year or not ... maybe ... maybe not?!

 

Hopefully I will feel comfortable, encouraged and like Jocelyn is safe, learning and loving it!

 

That's my hope anyways.

 

Our Immediate Goals with Preschool for Jocelyn?

1. To have fun & enjoy herself
2. To be excited for school and comfortable with her new surroundings
3. A chance for everyone to get to know her
4. For her to get accustom to everyone, the noise level, commotion & environment
5. Begin learning, interacting & communicating with others

***We feel like we have to establish these basic goals, so that Jocelyn then has the opportunity for growth, development and learning OUTSIDE the home. So, we aim for these goals, and the rest will fall into place.

 

Jocelyn's three now, she's a big girl -- and mama knows she needs to give her new opportunities. I will be able to tell if this is the right path, but I have to allow people the chance to make a difference and also give them an appropriate amount of time.

 

I'm not gonna lie, I'm nervous and scared!! I don't want Jocelyn to be scared, I don't want her to get hurt with someone else lifting/handling her, I don't want the other kids to be mean to her, I don't want her to be ignored or people get frustrated with her, I don't want her to not be given opportunities just because she can't do something like everyone else ... I want to see her succeed, learn and flourish!!

 

We start on Tuesday -- any and all prayers are appreciated!!



THREE

Our BIG, BRAVE, BOLD & BEAUTIFUL

Baby girl is THREE!!!

 

{I didn't think it was possible - but we love you more & more EVERY YEAR!!!}

Happiest of birthday's sweet princess of ours! I wish there was some way you could TRULY know how much we love you, how thankful and happy that you are HERE with us, how we would do ANYTHING and EVERYTHING for you ... I would give you the world if possible!!

 

You have grown and changed so much over the past three years ... you CONSTANTLY surprise us and so many others. I don't think anyone should EVER doubt your will, your strength, your determination ... just all of your complete amazingness!

I will NEVER forget people telling us to "let you go." I know its been a long, hard road for you sweet girl & us as a family/couple ... but I look at you, your life, your love, your energy ... and you ARE MEANT TO BE HERE!!!

I look at the day you were born, and then I look into those sparkling big brown eyes that are so full of life and love, and I'm ALWAYS brought to tears! You are my hero Boogie -- my EVERYTHING!

 

I can't WAIT to celebrate you today, tomorrow with our family and always!

 

HAPPY BIRTHDAY PRINCESS!

INFURIATED!!!

YES! I AM BEYOND INFURIATED!!!

... If that is at all possible!

 

I will try to only give you the basics but I'm still so mad, I have to write about it to not only make myself feel better -- relinquish the anger -- but hopefully ensure that this doesn't happen to someone else!

 

Back in November ... November 9th, 2012 to be exact ... Jocelyn's shunt failed for the 4th time. You can read the story {HERE}! Well, of course something like this costs A LOT -- no big surprise. However, thankfully because we are military {which comes at a huge price in regards to our family mind you} but that said, we fortunately have pretty good insurance. And don't think for one second that we haven't paid our dues or haven't earned having this insurance!

 

Lots of medical supply companies, industries, hospitals, clinics, etc don't particularly like Tricare because they don't pay the bazillion dollars that they ask for. That's fine ... that's okay! But don't think you can sign a contract accepting Tricare's terms & conditions, and then think you can do whatever you want. YOU as the company, made a conscious decision to be in participation with Tricare! And on a side note, I do think Tricare is pretty fair in what they pay, but they are not going to pay over and beyond just so these places can attempt to recoup what they lose from other people.

 

So with that said, the company called American Medical Response (also know as Medevac Mid-America) has billed us thousands of dollars for transporting Jocelyn from our house to a local hospital. We wouldn't have even used an ambulance, but we couldn't get the seizures to stop. But that's neither here nor there.

 

The hospital we were transported to was not equipped to help us (we already knew that but KS City was a long drive while Jocelyn was unstable) but then, we had to be transported from the hospital to children's mercy which is about an hours drive.

 

Anyways, they have submitted both ambulance trips to our insurance and then accepted Tricare's payment to them. They didn't like what Tricare was willing to pay, so they again sent us bills in January. I called the company and Tricare, had everything resubmitted, etc and thought that was all taken care of.

 

WRONG!

 

Again, we got more bills for several hundred dollars and this is when the fun began today.

 

I ended up calling both American Medical Response (AMR) three times and Tricare three times.

From Tricare - I talked to Sherri, Sherry & Barb

From AMR - I talked to Maria, a girl that made me so mad I forgot to write her name & Ashley

 

***Write names, times & dates -- very important lesson that I learned when I was young and worked for Great Plains Inspection & Butterfly Supply when I first started college! Thank you for the lesson Gary Burke.

 

Come to find out, Tricare wanted AMR to contact them & AMR wanted Tricare to contact them. I found myself as the middle-man.

 

I don't do the middle-man thing.

This is YOUR job -- I'm not getting paid -- YOU figure it out!!!

 

The first lady, Maria, from AMR said it was not their company's responsibility to ensure things got paid and that it was both mine and our insurance. The second lady, who was straight up an idiot, said they filed an appeal to Tricare on 1/18/13 (because Tricare paid too little in their opinion) and have never received a response since that appeal. I asked her "Well who is responsible for doing a follow-up ... perhaps they didn't get the appeal?" She literally told me "Of course they did ... why wouldn't they ... we did our part & I don't know what else you want." This would be where this mama started to get REALLY PISSED OFF!! This second girl refused to transfer me to a manager or anyone else (only further fueling my anger) and we finished the conversation with me telling her that she can go ahead and write in her notes that I'm not going to pay this damn bill because I know my insurance, I know what is covered, I know that I have no responsibility and what they were doing was AGAINST THE LAW and I wouldn't stand for it!!!

 

So in between talking to the 2 ladies from AMR, I talked to the ladies from Tricare. Come to find out, Tricare DID receive the appeal, and paid AMR even MORE money upon re-evaluation!

 

For everyone keeping score -- what was AMR doing? I'll tell you ...

 

It's called "BALANCE BILLING!"

          What does this mean?

                    It means, AMR is trying to recoup even more money from people like me who may not know the difference. I mean afterall, you don't want a bill going to a collection agency right? So you might be aped to pay the bill and then "figure things out later."

 

I could give two shits because I WILL NOT BE TAKEN ADVANTAGE OF!! And I won't be held responsible for a company that is literally breaking the law.

 

This bill they sent has an invoice date of 2/19/13 and you know what I found out through my investigation? After Tricare received the appeal from AMR, they cut a check for a few hundred dollars, thus paying them even more (so their appeal efforts actually did get them more in the end ... great for them!). Anyways, Tricare cut that check on 2/7/13 and it was mailed 2/8/13. AMR ended up CASHING the damn thing on 2/15/13 and then they had the nerve to bill me AGAIN come 2/19/13 just to see if they can get the rest??

 

YOU CAN KISS MY ASS!

 

Once a company decides to accept an "assignment of benefit" then they are required, by law, to write off the remaining balance thus leaving a ZERO balance to the consumer!!

 

It is against the law!

Period!

After talking to the 3rd girl from AMR, Ashley, she told me "Oh yea, after looking through things I see where they did pay more. I will put in here that the responsibility will be taken off the patient for now as its being reviewed by our company. If you don't receive another bill, then great! But if you do, or you are curious, just call back for a status update in about a week."

People -- I'm glad I got through ONE of their thick skulls, but I'm telling you, that last little bit from her? I could've exploded!

So after over an hour of non-stop calling between the two companies, a million questions asked, doing some basic investigation, getting down right ugly about things, holding people by the hand to guide them through a computer and documents like a small child ... what ended up happening?

We currently have no bill -- I think?

And all this will be submitted to Tricare's grievance department because I know for a fact I am not the only one they are trying to pull this bullshit on and I feel bad for all the other family's that have fallen for this.

The Lesson Learned?

Be prepared.

Don't quit after one try.

Don't take no for answer.

Demand explanations.

Stand your ground.

Exercise your knowledge.

Don't allow someone to take advantage of you.

and flipping your "bitch switch" has a place!

It's not good-bye ... It's see you later!

Today marked Jocelyn and I's final day with TARC!

We have officially graduated from the program and will now receive services through the school district.

 

We made a special trip into town today just to see Sarah, our friend and coach, one last time within the TARC realm. We of course were not saying "good-bye" because we will always be in one another's lives, so instead, it was more of a "see you later!"

 

In an attempt to express our love and gratitude to Sarah and ALL THAT SHE'S DONE FOR US, we made her a special gift ...

 

{We used Jocelyn's preemie feet to make the "V" & used a picture of
the two of them from last year's Halloween fun that took place at TARC}

{Keeping with a "preemie" theme - we snagged us some of the most delicious preemie cupcakes around! Aren't these the prettiest? Hope they're super yummy!}

These two "gifts" pale in comparison to all that Sarah as done for both Jocelyn, and us as a family, in order for us to be successful.

Sarah has been so giving of her time and talent - she's went over and beyond! How do you thank someone for that?

Some might say "Its her job" or "That's what she's suppose to do" but this is not true. In the last three years, we have come across PLENTY of people who are in their field because its a job, because a person needs a paycheck, etc.

Sarah is FAR FROM this stereotype.

We started our infant/child development journey with an incredible team in Salina, we had a huge hiccup in the middle, and its so rewarding to finish this chapter of our lives on such a positive note.

Our dear Sarah, you truly have impacted our lives in more ways than I could possibly count. You've been incredibly encouraging and supportive. You've been our researcher, coordinator, go-to person, our cheerleader ... you've seen us at our best and worse. You've loved us like we were family. Thank you is not nearly enough, but from the bottom of our hearts ...

Thank you for being you ...
          for everything you've done ...
                    for loving us!!!

New Bed

I meant to post this a while back but uh, things have been B.U.S.Y!!

Unfortunately, as much as I love it, blogging hasn't been at the top of the "to-do" list!

 

Waaaaaaay back in the beginning of February, I talked about how the hubby was working on a new bed frame for the little princess. That particular story can be found {HERE}!

We basically needed/wanted something to ...
 

         #1: Get her bed OFF the ground

         #2: Something that would be high enough to save our backs & knees with getting her in & out of the bed

         #3: Something that would keep her from rolling all over the damn room at night only to FURTHER wake me up

         #4: And lastly, something that was fairly inexpensive, personalized & made BY DADDY!

 

Here is Boogie's new bed made my her daddy! Oh, and the color? Boogie picked this bed color multiple times over, so a hot-pepto-pink bed she got! :)

{The other "bed rail" isn't attached because we didn't need it afterall}

{And I would say it has Boogie's stamp of approval! Daddy did a GREAT job!!}

 

T.W.E.N.T.Y

Yes, you read that correctly ...
          I've lost TWENTY pounds in just a little over 60 days!

TWENTY.

TWENTY!!!

 

I honestly ... truly, honestly ... can't not believe I've lost 20 pounds in about 2 months!

 

So keeping with what I love most? Let's visualize what 20 whole pounds LOOKS like!

 

{A car tire! Yes, a TIRE! I quite literally lost my "spare tire!"}

{Milk ... 2 1/2 gallons of milk in fact. Doesn't sound like much? Strap 2 1/2 gallons around you, or hold on to them all day, THEN see how you feel!! Definitely a lot of extra weight!!}

 And all you parents can appreciate this one ...

 

{Over thirty -- 30! -- CASES of the 112 count Huggies Little Movers Size 6 diapers!!!}

No matter how you slice, dice or figure ... 20 pounds is A LOT!

 

I feel accomplished, successful and better than ever! I've lost it the right way ... the healthy way ... and my body is loving me for it!

 

Definitely will be smiling all day! :)

Big Day with Big Promise

Often times, so many of my wonderful friends and family (out of true meaningful, loving hearts) say the following things ... but how I feel is ...

And last Friday ... whew! ... it was a big day for all of us.
I had to put my big girl panties on and ...

In case your wondering, that "fear" that this mama had to punch square in the face, was the fear of trying another preschool for Jocelyn. I have waaaaay more than just one little thing that I fear when it comes to Boogie, but us mamas worry about EVERYTHING it seems.

In regards to preschool fears and Jocelyn:

• Not being with her
• Not being mobile = dependency & danger
• Being around other kids
• Getting hurt
• Shunt failing yet again; seizures
• Having her scared of everything
• People not understanding her or being mean
• G-tube getting pulled out
• Being in her wheelchair the whole time
• Lack of therapy & those techniques being implemented in the classroom
• Not getting what she needs to thrive
• Lack of patience and understanding to help her succeed
• Poor communication with both her and I
• Not believing that she can learn & it affecting her cognitively
• ...the list is endless people!

And PLEASE nobody tell me that if I'm trusting in God, then I wouldn't be fearful! That is a joke and I will hate you forever for even saying that to me. Ok, not really, but I find it supremely annoying when people say that crap to me! We all worry, stress, freak out, etc and yes, even the "best follower of Christ" does it to...(now I will come off my soapbox).

So yes, regardless of the fears, we are trying another preschool. Why? Because I need to see if they can offer something for Jocelyn that I can not. We obviously have no other children (and we won't be), and her interaction with people other than her therapists and the gazillion appointments that we have, she is never around other little kids. I need to see if being around other kids makes a difference for her, get her accustom to different environments, people, places, ways of doing things, etc. If this decision to try another preschool proves to be beneficial, I will know it. I trusted my gut with our last preschool experience and my gut was right. I also know that I have to give everyone ample time to get to know Jocelyn, how to help her, etc ... and I WILL do just that!

I've already given myself the pep-talk I need in order to ensure that I do not hinder a potentially positive thing. But you bet your ass that my eyes are open even more this time!

We had our IEP (this is short for an Individualized Educational Plan) meeting just this last Friday and it went pretty well. It was long ... 2 full hours ... but I think, and hope, we all understand each other, and truly want to see Jocelyn succeed.

Not everyone was present for the meeting (ie the physical therapist which I feel is highly important of course), but Jocelyn's teacher, the OT, Speech, Nurse and my side-kick Sarah were all present. It was such a comfort to have my girl Sarah with me. She didn't really even have to say much, but sometimes a persons presence and support can mean the world to someone. Thanks for always have my back hun!

The hubby couldn't be with me because he was still in Pennsylvania for military training/schooling. Throughout the two hours we discussed several things, signed papers, blah blah blah. But I do think I made a good first impression.
(First impressions are not always my strong suit! :P)

In order to be prepared as best I know how, I made cookies the night before (because who doesn't love cookies? And, I thought it'd be a great ice-breaker ... my mama taught me right ... win them over with food buddy), but I also made a transition portfolio for each and every person there.

What is a transition portfolio?
 

Basically its a way to offer information to the staff to help know/understand Jocelyn better without me having to verbally say everything.

 

Besides, you know I would eventually get tuned out anyways!

And, its nice to have something to refer to later for additional information.

 

I think some of the best parts about the portfolio was that I created it as if Jocelyn was talking to them, and incorporated a lot of pictures. Its true what they say ... A picture can speak a thousand words. I wanted them to actually SEE Jocelyn doing certain things and not think that I embellished things or that she can't do certain things.

We just have to adapt and do things differently.

 

Here's part of what the notebook looked like.

{All the books were in a black binder and each binder already had sheet protectors inside. The page on the right is the cover page of course - J's so cute! And then on the bottom you can see where the information begins. There were 4 pages total that discussed things that Boogie likes - favorite books/songs/toys/activities - things that she's afraid of, information about going to the bathroom, getting dressed, meals, activities of daily living, how she communicates, therapy needs & expectations and then medical information}

{Then there were fun picture pages showing them some of our preschool activities and a variety of other fun things that she does throughout the week. We also included documents like her most recent vision and hearing exams, and her most recent therapy notes from her PT/OT/Speech from Easter Seals Capper Foundation for added info}

Overall, I think they loved and appreciated both the books and the cookies.

 

I made a total of 10 books - which contained 8 pages that I created - 2 medical exams - several therapy notes - a bit of time - and it all came to a lot of paper and nearly 2 rounds of both black and colored ink. All of which were totally worth it for helping Jocelyn.

 

A special thank you to everyone that helped me proof read, add, delete, etc -- you helped make this portfolio wonderful, very special and effective!!

 

I feel like everyone at the IEP meeting were all on the same page, understood that I was a very involved parent with high expectations, and that all I want is for EVERYONE to try their very best, be creative with their teaching/therapy approaches, include Jocelyn as much as possible, to see her as a person and not her diagnosis and to help her adjust and HAVE FUN!!

After all, its preschool!!

Not medical school!

 

Oh my gosh, I almost forgot! While we were meeting, we of course discussed things with the school nurse (who was actually pretty impressive as she has had 25 years of ICU experience and currently works with a lot of special needs kids, kids with cancer, etc -- so that was comforting), she asked me if I was a nurse as well. I of course told her yes. She asked if my license was up-to-date, which of course it is. Then later on, I guess she liked me enough, was impressed enough, that she told me she wanted to get me hired as a school nurse there because they will have an opening soon. She even went and got the other nursing staff to meet me and introduced me as their "new nurse!" hahaha

 

SAY WHAT THE WHAT?!?!?!

 

Would that not be the most glorious thing in the world?? I could practice a bit, make a little bit of money and most importantly ... BE IN THE SCHOOL WITH JOCELYN!!!

 

It might be an LPN position (so it'd be less pay) but seriously, you think I care about that? NO WAY!! I'd get to peek in on Jocelyn whenever and just know that I'm right there for the "what ifs!"

If its meant to be, it will come to pass, but I left there feeling pretty good all around.

 

Many blessings!

 

We will only be going for a few weeks as summer is right around the corner, but praying these next few weeks are a time of discovery, fun and growth that will set a positive tone for the next year to come.

 

We start Tuesday March 26th!!