Tuesday, March 19, 2013

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!!!

Monday, March 18, 2013

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!!}
 

Thursday, March 14, 2013

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! :)

Wednesday, March 13, 2013

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!!

Thursday, March 7, 2013

Frustrated & Flattered

FRUSTRATED
I LOVE seeing our babygirl like THIS!
But the norm lately, has been THIS:
She does look pretty precious sleeping though!
But, I want, and NEED, Jocelyn to sleep more and sleep better at night.

She will be three on March 22nd ... THREE! So this whole waking at 2:30am, 3am or 4am business (the time always changes but its always way too early!) and then being so tired after breakfast that she can't even cry about being tired?
Its not working.
And I'm sick to death of it.
 
The days are too long and we have too much to accomplish without wasting away the day sleeping.

Yesterday, Jocelyn woke at 2:30am and I was up and down with her until 5am when I finally said forget it, lets get some water and food in you. Come 7:30ish, she was so tired that nothing could keep her awake. She slept from 7:30ish - 11am. At 11am I went into her room to wake her because hello, it was now time for more water and lunch!

It took thirty minutes to wake the princess.
And she's not even a teenager yet!

This morning was a repeat of getting up early but she triggered at 4am ... or at least that's when I heard her. She woke me with giggles (and I suppose she thought that was a better approach than the morning before). It truly is difficult to be angry or upset when your daughter wakes you with giggling.

We are pretty confident that her lack of sleep is because of the brain damage. The brain bleeds damage some pretty integral parts in there, one being the pineal gland.

We are already giving her 5mg of Melatonin and even 1mL of Valium to help with any muscle spasms. I suppose soon I will again have to call the neurologist and inform them that we might have to try something else. I hate to add more meds because I just got her off several different kinds (ie prevacid, etc). Its like everytime I wean her off one, we add another one. And I say wean her because the medical field does a poor job of reevaluating medication usage ... they just add and add without thought to maybe "hmmm, she might not need this anymore."
So I guess I will do it!!!
 
I may be more stressed about the whole sleeping thing lately (besides the fact that the hubby's been gone, I need sleep and this has been going on for 3 years ... yea I know ... those are enough reasons), but we will be trying a new preschool in an actual school district here in a few weeks (more on this subject soon!!!) and there is NO WAY she will succeed if we can't even get sleep.
 
I know what many of you are thinking, "She will adjust" and "she will get on a schedule" and "she will get worn out and probably sleep better at night." Trust me, I've been trying to get her, and keep her, on a schedule from day one! Not to mention, we've tried the preschool thing outside the home for a month and she never adjusted.
 
We will just have to try, wait and see ... that's all you can do!

FLATTERED
Yesterday, after we had physical therapy, Jocelyn and I went swimming and two things happened. Oh, before I tell you about the "two things," let me tell you about our PT session.

Little miss fancy pants not only crawled the length of the therapy room once, but TWICE and even right out the door and into the hallway!!! Hallelujah!!! Now, we used sesame street/Elmo as her motivator, and it took her about 20 minutes, but it matters not -- SHE DID IT!!!

I felt like the richest mama in the world!
 
Now, about the two things:
 
- ONE -
Before we even got into the pool, we had to get dressed of course. Jocelyn and I have not been swimming much because we both were so sick. Now that we're better, it was time to get back to our pool therapy of 2x's/week.
 
I went to put my swimsuit on, and instantly I became THAT mom!!! You know, the kind of mom that other kids look at and go "Oh my god I'm so glad she's not MY mom!!!" My swimsuit had totally grown! Seriously, its a tankini and the top was so big and loose that at any moment when I moved a boob was going to fly out and say "HEY!!" Then, the swim bottoms looked like I took a poo in them. I looked in our bag and was relieved when I saw that I also had board shorts. Unfortuantely, when I pulled them on and cinched them up as tight as they would go (thinking that was going to be my saving grace!), nothing happened. Once I let go ... BAM! They just dropped to the floor!

Really? Was I THIS much of a chubby bunny??
 
We still went swimming because I promised Boogie, but it was an adventure to say the least.

- TWO -
While we were swimming, we met a lady named Emily and her son named Ethan. Ethan is 21 months old and during delivery, he suddenly suffered from a massive stroke. His stroke was so massive in fact, that if an adult would have incurred one just like it, they would have more than likely have died.

Anyways, after chatting for a while, Emily said that it finally dawned on her who Jocelyn and I were. She told me how learning about our story and success through the Easter Seals Capper Foundation is what made them want to get therapy there. She said she found our pictures and story for the Easter Seals Donor Reception from 2011 and even watched our Video. She told me "after learning about you guys, I thought if they can do it ... we can too." She went on to say how much of an inspiration we were, etc and how she also found our story about using the iPad for communication in the Topeka Journal and even on a website called "Therapeutic Resources Blog."

I was floored ... felt a bit stalked ... but floored in a good way.

I totally had to go looking for our article on both sites she talked about and yep, there they surely were. I absolutely cried the entire 7 minutes of the video ... again! Its hard to re-live all that in a snapshot and see Boogie so small.

I guess its true, you have no idea the impact you make on a persons life ... even a complete stranger.

Lots of true, feel-good moments yesterday!

Wednesday, March 6, 2013

Celebrity Doppleganger

I thought this was funny!

My sweet friend Amber told me yesterday that she thought the celebrity ... who is Ari Graynor (I didn't know her name) ... is my celebrity doppleganger.

When I saw the picture I thought wow -- it kind of is!

I sent the picture to my sister this morning and she instantly thought of this picture of me ...


This side-by-side comparison is CREEPY!! And it makes me laugh for two reasons: 1 - because I'm NEVER this serious hahaha and 2 - because I got a curl-fro for reals! Just put a flat-iron to that jheri curl of mine and bam -- I could be Ari haha

But seriously, here and especially when they are right next to each other, I can totally see I've got a famous doppleganger! Fun!

Friday, March 1, 2013

Did You Know...

... That the month of March is National Brain Injury Awareness AND Developmental Disabilities Month??!!

Jocelyn happens to have both a brain injury (ie from massive hemorrhaging) and developmental disabilities.
          For this blog, I wanted to focus on brain injury awareness.

How many of you personally know someone that has had a brain injury? How many of you personally live with a brain injury?

               Sometimes its hard to tell, some manage themselves just fine, and yet for others, they are completely dependent for the remainder of their lives.

No one is safe from sustaining a brain injury - NO ONE!
 

If you know us and our family, then you already know that our most treasured possession ... our sweet princess Jocelyn ... acquired a nasty brain injury after birth. Some have what is called a "traumatic brain injury" or TBI.

I will attempt to not utterly bore you to tears, but when you have someone so close and so precious to you that suffers from brain damage, you want others to be aware of this life altering injury, to increase understanding and support.

After Jocelyn was born, she went without the necessary oxygen that her body required and her brain hemorrhaged ... and it hemorrhaged BAD. After everything was said and done, she sustained grade IV bleeds on both sides of her brain which damaged so many precious parts and has affected her ability to see, hear, talk and eat. Also, her brain injury has affected the muscles of her body which hinders her ability to perform tasks such as moving and manipulating things.

This is the reason why Jocelyn requires a wheelchair, its why she has spastic muscles and continuously requires Botox injections, why she has to wear special boots on her feet, why she has problems with sleeping/vomiting/expressing herself, why we are constantly going to therapy as well as doing it at home, why one day soon she will need bilateral hip replacements, why we have a g-tube, why we go to appointment after appointment after appointment ...

Because of Jocelyn's acquired brain injury, this is the reason she has a shunt in her brain as the severity of the hemorrhaging caused structural damage preventing the cerebral spinal fluid (CSF) to drain from her ventricles appropriately.

In our particular case, when ALL this happened -- what do you get?

CEREBRAL PALSY
- And it affects our WHOLE family! -
 

You don't have to look hard to see that a brain insult/injury can change your life instantly without any warning. A brain injury can affect thinking, language, learning, emotions, behavior, sensation, mobility ... the list is long and endless it seems. How do I know this? Because Jocelyn is affected in ALL these areas.

Generally, there are long-term consequences of an acquired brain injury and/or a TBI. The CDC & Prevention estimate over 5 million Americans alone have a long-term or lifelong need for help to perform activities of daily living as a direct result of a TBI.

To help spread awareness, I thought I would provide examples of an ABI & TBI.
 
An Acquired Brain Injury (ABI), from traumatic and non traumatic causes, is a leading cause of disability worldwide.

Examples of an Acquired Brain Injury:
  • Stroke
  • Brain Tumor
  • Encephalitis
  • Hypoxia
  • Brain Hemorrhage
  • Traumatic Brain Injury
Examples of Traumatic Brain Injury (TBI):
  • Falls
  • Vehicle Accidents
  • Assaults or being struck in the head
  • Blasts (like what the military experience during war zones)

A brain injury can HAPPEN TO A.N.Y.O.N.E!!!


Brain injuries do not always present the same in each person -- almost never are there two people with the same injury that demonstrate the exact same problems -- they can be similar, but never are any two brain injuries exactly alike. You want to talk about frustrating ... this is frustrating for the injuired individual, the family and health professionals. Why? Because there is no special recipe, no particular procedure, treatment, etc that works for each person. Sometimes there seems to be no rhyme or reason to why a treatment or procedure works for one, and doesn't work for another.

Brain injuries can range from levels that are mild to severe. Jocelyn had a severe brain injury which manifested into moderate to severe cerebral palsy.

Some stats of those affected by Acquired Brain Injuries:
  • Stroke: 795,000
  • Tumor: 64,530
  • Aneurysm: 27,000
  • Encephalitis: 20,000
  • Multiple Sclerosis: 10,400
  • Anoxic/Hypoxic: number unknown
The direct medical costs in an ABI population are substantial in the first year post-injury and typically costs greater than $40,000.

I was also curious about TBI statistics, did a little research and wanted to share.

Of the 1.7 million people who sustain a TBI each year in the United States alone (MILLION ... so our daughter is by far not the only one affected ... and 475,000 of these cases are in children) the following occurs:
  • 52,000 DIE
  • 275,000 are hospitalized and
  • 1.365 million are treated and released from the ER
  • 3.1 million will live with a life-long disability as a direct result of a TBI
The cost to treat the average TBI?
  • Post acute care: $850-$2,500/day
  • Average hospital-based acute rehab: $8,000/day
  • Therapy/Treatment Programs (ie 4hrs of therapy ... we do this easily): $600-$1,000/day or week
    • And we aren't even getting to any secondary surgeries like Jocelyn has had (ie eyes, gtube, soon-to-be hips, etc)
  • CBC & Prevention estimate direct medical cost & indirect costs (ie loss productivity, etc): $76.3 billion ... BILLION ... each YEAR!
Living with a brain injury, caring for person with a a brain injury, is no joke!

I pray all of us, and those we love, never experience this often life-altering disability.

What we can all do?

Learn and talk about it,
love and help each other,
be sensitive and encouraging,
do not judge,
to not discriminate
...
HELP when and wherever you can!