CP Humor

1. "I'm not krumping, I have cerebral palsy"
2. "It takes talent to trip over nothing...or CP...that'll work too"
3. "Some say disabled but I say I'm EXCEPTIONALLY abled"
4. "CP. To some that stands for Cerebral Palsy. For my daughter it stands for Cutie-Pie"
5. "QU_T!" I will have no part in it"
6. "My brain has cerebral palsy, I do not"
7. "I understand you...you're just boring me to death"
8. "I can do what you can, we just do it differently"
9. "I don't need my legs...I've got wheels baby"
10. "I might not always be able to control my arms, but I make lookin' gangsta easy"

***My confession -- I came up with four of these "quotes" (yes, I crack myself up hahaha). Can you guess which ones??

Feeding Self

HOLY SMOKES PEOPLE!!!!

 

This has OFFICIALLY been the FIRST TIME...did you get that?

 

FIRST

 

FIRST

 

FIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIRST TIME

 

Jocelyn has EVER tried to feed herself!!!!

 

Being able to eat independently is what most of us take for granted each day. We cook something up for ourselves, grab something from drive-through, pop that favorite piece of candy in our mouths or drink that unbelievably delicious drink and go on about our business.

 

For Jocelyn, she has trouble with eating and drinking because of the lack of muscle coordination/control, and she also rarely demonstrates that she's hungry or thirsty.

 

Currently, we feed Jocelyn three blenderized meals a day along with four 8oz water flushes. During one of those meals, usually its lunch or supper as she is awfully nausea during the mornings, we attempt to spend 10-15 minutes at the beginning of her meal to have her at least taste something, touch food or even open her mouth at all. We have learned not to expect her to do anything and make this her "food play time" and absolutely view it as a time to do whatever she wants with food. Trust me when I say this was (and continues to be) a tremendously difficult thing for us to learn because we want her to eat and drink on her own so badly! We know if she could eat and drink that she of course would. What kid wouldn't love to down a cupcake or fries? I generally do most all of Jocelyn's feedings and I've had to learn the the hard way that I can't control this issue and to be patient! 

 

I push Jocelyn to try things that she's put off by such as veggie straws (she hates the texture of carbohydrate type of foods but will tolerate tasting the ranch flavor), but I've learned to only do it as she will allow since we are trying to teach her that eating is an awesome part of life!!! It hasn't been until recently that she enjoys and wants to drink from anything at all. Now, throughout the day Jocie tries to drink from a plastic water bottle. She typically only gets her mouth wet but sometimes she really does get a drink, and she even tries to hold the thing with both hands -- DOUBLE SCORE!!!

 

Tonight Jocelyn surprised Justin and I both. As we started her tube-feeding, I offered her some smooth strawberry yogurt. She didn't want to open her mouth to taste any of it (pretty typical) but after I put a tiny bit on her lips and she licked it off, she opened her mouth for more. After about three times of that, she wanted to put her hand in the container and she NEVER does that -- its a sensory issue. Next thing we know, she is putting her hand to her nose and smelling it and then BAM! She puts her hand in her mouth and starts sucking the yogurt off her fingers. She repeated this over and over for 10 minutes!!! She even tried to use a spoon!

 

I attached some video of us capturing her pure awesomeness! I know it's not "pretty" eating and especially with her being older, but none of that matters, what matters is that she's TRYING!! :)

 

 

 

Tonight is just wanted we needed -- progression and encouragement!! We are still beaming!



Under_Construction

It seems like its been a long while since I've last blogged (I'm on withdrawals people!). This is in part because during the last week or so, we inherited a dog, my sisters come from Virginia to visit (YAHOO!!!) and I've been consumed by a book called "Choosing to SEE."

I will have lots more to say on all three of these things very soon.

For now, since I only have literally five minutes, I want to tell you about a little something I had special ordered and recently received.

There is a site on Facebook called "Under_Construction Survival Bracelets" that you can order one-of-kind support bracelets, watches, keychains, dog tags and so much more. Normally I don't advertise for people, places, things (well, maybe occasionally) but this lady is married to a military man and they are currently stationed in Azores, Portugal. She has a wide variety of items to choose from to make fun, creative combinations. Also, as an added bonus, all her items are very well priced in my opinion.

Here is what I ordered:

What you see above is a dog tag bracelet that says "Mother to a CP Warrior." Without a doubt I'm a proud, proud mama and Jocelyn is the bravest warrior I've ever had the privilege of meeting and caring for. The cord colors I chose were green to represent cerebral palsy and silver for brain injuries/disabled children. There are many different types of bracelet designs/styles you can choose from. I went with the heart-style bracelet because it seemed the most fitting seeing how Jocelyn is "my heart." On the back side of the dog tag has her birthdate and a metal "hope" closure.

I think part of the reason that I love having things like this is because not only do I get to proudly support Jocelyn, but when people ask about the bracelet, it gives me an opportunity to share and teach them about cerebral palsy. It has become no surprise to me at how much the general public doesn't understand or know about cerebral palsy. I suppose in all honesty neither would I if it wasn't for having my own angel with this diagnosis. I believe it is a lack of knowledge which causes people to innocently make comments or ask unknowingly hurtful questions. I decided that if I do something like this or even make business cards with cerebral palsy information on it to hand out to the inquisitive staring eyes, that people react much differently.

 

I love the bracelet because it was very well done, but mostly because of its beautiful meaning!

 



Disgustingly Poo-tastic!

To quickly educate you...

When you have cerebral palsy you typically have hypotonic (weak) or hypertonic (tight) muscles. Jocelyn has a mixture (aren't we lucky? Insert a large amount of sarcasm HERE!). Anyways, Jocelyn has low muscle tone/control of her trunk which means its difficult for her to utilize those abdominal and back muscles normally. This also means that the muscles are weakened on the inside of her body (aka her bowels).

Many people with cerebral palsy have to take some kind of supplement to help them have a bowel movement. Even though Jocelyn gets plenty of free water and lots of fiber in her blenderized diet, she still requires medications such as Miralax or Naturals Calm. We prefer the Naturals Calm because well, its more natural and its not a laxative like the Miralax. Yes, we want her to be able to poo, but we also want her to learn some bowel training so that battle later on might not be so severe.

Anyhue, so there you have it. Jocelyn has trouble with her poo factory. Sometimes we all do, don't deny it, its part of life.

So the point of this little blurb tonight is to let you know that I must REALLY love our daughter! Once in a while she requires an enema like Pedi-lax. I try my best to stay on top of things to prevent having to use these because I don't want her to be dependent on them, but they work fast and I.MEAN.FAST!!!

Tonight wasn't my first rodeo and I know Jocelyn doesn't like getting them. I wouldn't want a piece of plastic rammed up my butt either and then for someone to squirt water in there. Too graphic? Sorry, but this is some true reality folks. Well, this evening, Jocelyn got me back.

Not only did poo-filled Pedi-lax shoot back at me hitting my clothes and face (it was minuscules from my eyes and I'm not completely sure my mouth was closed), but then...THEN...once she was "unplugged" I instantly was covered in a warm waterfall of backed-up poo. How did this happen you ask? Well, after giving the medicine, I often put Jocelyn in a crouching type of position to help her and provide resistance on her tummy so she has something to push her abdominal muscles against since they are weak. This time was oh so special because well, she decided to thank me in her own sweet way. Whatever visual you are now getting, you are more than likely spot on!

Thank you for letting me share this with you so you can be just as grossed out as I was...and still am...you're welcome!

Questioning Without Thought

Over the last few weeks I was asked two questions that keep getting played over and over in my head, and today, those questions have been on replay.

Question #1
"How are you going to make sure Jocelyn is part of your life and not your total life?"

Question #2
"How does Jocelyn fit into you and your husband's life?"

I'm not sure what your reaction to these questions would be, and to be honest, I don't recall how I responded either. These two questions were asked by two different people in totally different settings, but yet I think the questions are quite similar in nature.

When I was asked these questions I remember thinking "hmmm, thats a weird question to ask" and then blew it off. I can't help but wonder if Jocelyn didn't have so many special needs, would these even be questions a person would ask me? I have to say, I think not!

For all you  parents out there, even those with children grown and gone, have you ever been asked something like this? I don't understand why people think they can treat Jocelyn, and us as a family, so differently just because Jocelyn has cerebral palsy and developmental delays.

Why would someone even ask how Jocelyn would fit into our lives? She's our child and "fits" into our lives just like any other parent/child relationship. Furthermore, I don't know of any parent that doesn't make their child(ren) their life. Don't get me wrong, I personally know of some people that can wash their hands clean of their children and appear like they never had them in the first place, but true loving, caring parents are all about their kids. I think when you become a parent, its a natural calling to give your best for your child.

From the wonderful mothers I know, we all go without so our kids can have, we eat late or our food is cold because we are busy attending to our kids and family, we go without sleep endlessly sometimes because when a child is in the early stages they need a bottle, or when they get older its because they can't sleep, are crying or are sick. We've all done it, and in some form of another, we are all still doing it. Its called love and sacrifice!!! I don't think a parent ever stops "giving" to their child. I think the way a parent gives and cares for their child just changes over time, but it never stops. So why is it that just because my daughter isn't progressing as quickly and is staying in certain developmental stages longer, makes things worse and like I'm not doing a good job of "balancing life." For that matter, why is it anyone's business if my husband and I want our life to be all about our daughter and us as a family? Since when is caring about your family a bad thing? If we want to live and breath for Jocelyn and we are HAPPY with that, why does anyone care? I just don't understand how we couldn't make our lives about Jocelyn. Justin and I both believe children are a parents legacy and not something you take lightly.

Justin made a comment a while back that has been embedded into my heart and mind. With this comment, his perception on life and us as a family, has only made me fall that much more in love with him. What he said was "I love being around you and Jocelyn. I could only hope that I can spend my entire life with you both. If I get to spend my days with Boogie loving on her, hearing her laugh and enjoying one another? Then that is all I ever need and I could think of a million 'worse' things in this life than getting to take care of our daughter all my life." Yes, THAT is the kind of MAN I have for a husband. A man that sees it as a privilege to care for his daughter all his life if for some reason she would prove to need that kind of care.

Maybe those two questions that were asked, were asked out of concern or love, but I just find it hard to believe that a person would think it is okay to ask questions like these. I have never looked at a parent and thought such things and therefore, I have to believe its because our daughter has special needs. So what, she has "special needs" oooOOOOooooOOO, that isn't what defines her as a person, or us as a family. Yes, Jocelyn's motor issues, development issues and sometimes plain 'ol health issues come with there own set of rules and more often than not, these things do end up setting us apart from other families. However, the fundamentals of being parents is the exact same, but we just do things a little different.

Do I get exhausted? Yes. Do I wish things were different? Hell Yes! Do I get sad, or angry and think things are unfair? Most definitely. But I think every person, whether you're a parent or not, experiences those same feelings and frustrations about life in general. No matter if my feelings are in a positive or negative state, because "feelings" can change at a drop of a hat, I will not apologize for how we choose to live our life as a family. I feel no need to justify how Jocelyn "fits" into our family or how well we are balancing our life from another persons perspective. I don't make it my business to tell people how to live, and I don't appreciate others that think they have the authority to dictate how we live ours.

3-D with Texture

We had another visit with TARC this morning (that's the Shawnee County Infant Child Development) and it went very well. Our coach, Sarah, who is a physical therapist, also brought along a girl named Melissa who is a special education teacher. With only first meeting Jocelyn and to have a limited amount of time this morning, we made a lot of plans for hopeful progress. Let me be the first to say that it is very difficult to have age appropriate toys for a child when vision, motor and communication is a problem. I did learn some new things I can try with her and that's all I ever want - guidance, direction and ideas.

Since Jocelyn decided it would be fun to get up before 3am and stay awake, she was getting pretty tired towards the end of the visit. Once the girls left, I started on a little project that I organized last week. Since I'm always having to factor vision and motor into everything we do, I decided I would get lightweight wooden letters from the store and cover them with textured, colorful material. With the letters being 3-D, Jocelyn will be able to feel the letters, and with them being fun textures and colors, she will be able to see the letters. In my mind I'm thinking okay, she will be able to feel the letters, see the letters, hear the letters when I say them and maybe...just maaaaaaaaaaaybe...this will help her with learning the alphabet. That's three modes of learning right there so I'm being hopeful.

I haven't bought all the letters of the alphabet yet because I wanted to make sure my idea would work, but below are six letters that I sprayed with glue, covered with the textured material and trimmed with an exacto knife.

It's hard to tell from the picture, but each letter has a different texture. Some are smooth (like the snake skin), others are bumpy (like the zebra & cow print or the letter "A"...and they are all 3 different types of "bumpy"), rough & shiny (like the letter "E") or fuzzy (like the letter "F").

Once I have all the letters completed, I'm going to put a small piece of velcro to the back of each one so they can be attached to a felt covered board. By doing this, we can easily spell words or just work on the letters and the alphabet in general. One idea that the teacher gave me today in regards to the letters, was that I could put paper over them and have Jocelyn use a marker and shade over the letter. That would not only give her another way to learn the letters, but also a cool texture underneath, or at least that would be the idea.

Anyways, like I said, after the girls left and I laid Jocelyn down for a much needed nap, I started making the letters. I have only finished these six and it took longer than I thought it would. I like fast easy projects, and just for the six letters, it took me 20 minutes. Ouch! Time is precious for all of us isn't it? Here's to praying the letters help Jocelyn learn in a fun, creative way.

Lighted Cocoon

One of the swings that we received from the Kansas Deaf/Blind Fund for Jocelyn, is a Joki Swing. There are literally hundreds of different types of therapy swings, but we used this particular one during an OT session and Jocie seemed to really enjoy it, and since we could use the funding, we decided to go ahead and get one.

The purpose for this swing (other than it being a swing and what kiddo doesn't like a swing?) is to produce relaxation, promote security and for us, to provide an enclosed area to assist Jocelyn visually, to enhance vestibular stimulation and so that her toys can't "get away from her."

When you look at the swing in pictures, what you can't see, is that there is a large fluffy, removable cushion that sits in the bottom of the swing. Having a removable seat is necessary for any child in my opinion because I've never met a mess-free kiddo. The only thing that I don't really like about the swing, is that there is no seatbelt or a way to partially seal the opening to keep a child from falling out. I suppose that would defeat the purpose though.

Anyways, I got the idea the other day to try and do something different with this "cocoon" type swing that would be more visually exciting. The thoughts of how I would flip over backwards a million times for a lighted therapy room continued to go through my mind (they are WAY too expensive...like thousands of dollars...so that will never ever happen). So hmmmm, what to do? There is always something you can come up with to resemble something else you got your eye on right? Or at least in an attempt to get the same result?

I mean, look how cool a room like this would be for any kid!!

So today, I strung up Jocelyn's Joki swing from the hooks we put in the ceiling and got out some fun different types of toys that squeaked, that are rubbery, fuzzy, etc to put inside. Before I put her in the swing, I cut a tiny slit towards the top of the swing and threaded through some little baby christmas lights. I had some unused ones packed away, both plain and colored, and thought "hey, this will work great!" Once I got them threaded through, I clipped them around the opening of the swing so she wouldn't get tangled in them. I closed the blinds, turned off the lights and played a Zen CD for some auditory stim too.

Here she is being all curious-like!

Its hard to see the lights and this was before I got them all clipped around the opening of the swing but you get the idea. It really did make the inside of the swing glow in a fun way!

After she was all snug inside and her toys within reach, I gently gave her a push, left the room and snuck in a quick shower. Not too sure what she thought about everything, but I think it was successful nevertheless.

PS - As a side note, this swing has a weight-limit of 175lbs so uhm, just throwing that out there for all you "big kids" that wouldn't mind having a swing like this too! And take it from me, its cozy! :) :)

A Dream of Divine Intervention

This morning while Jocelyn was eating breakfast and gettin' down to some Sesame Street tunes, and Justin was in the livingroom attempting to tidy up some loose-ends at work, I decided to take a look at a book called Choosing to SEE by Mary Beth Chapman and Ellen Vaughn.

This particular book was mailed to me by a very sweet friend and past co-worker, her name is Sue, probably about a year ago as she thought this book would help keep me encouraged. This friend that often times doesn't say much with her words but speak volumes with her eyes and actions, has had more than her fair share of struggles in this life. I know that she has been through more difficult times than she will probably ever share with me or others, but I know this is true for her because of her outlook on life, her wisdom and compassion. Even just today she told me, "Getting through the first emotion of pain to see the gift God's provided, and to receive the other emotions, is the key to love."

To be honest, I'm not sure if I simply misplaced this book, or purposefully avoided reading it for the mere fact that it is hard to dive into someone else's pain and experience their personal struggles and sorrow. My first impression of the book proved to be true. I simply read the dedications, forward, prologue and the first chapter, and I both smiled and cried twice. I have to ask myself, "What am I about to get myself into?"

In the little that I read this morning, a portion of the content concerned itself with a special dream that a friend of the author experienced one night. As I continued to read about this dream and how the end results manifested, one particular dream that I had over two years ago...one very special dream...came to my mind.

During some of the darkest days that I have experienced, I had a dream that caused me to wake up to the sound of my own laughter and tears. Man, as I write this sentence my eyes are starting to sting with tears as I both remember those dark days and because the dream remains just as vivid.

When I had this dream, Justin and I were spending endless nights in the Ronald McDonald House directly across from the Wesley Medical Center where our babygirl constantly fought for her life. I would spend countless hours simply staring at her through the glass of the incubator and all I could do was read to her, sing and talk to her and eagerly await for the next three hours to roll around so I could reach my hands inside to change her diaper, turn her over...just touch her. I would plead and beg for God to take the pain away, give it me, please God PLEASE heal her, protect her...DO YOU EVEN HEAR ME???

I can tell the pain of those days are still so fresh for me as tears are definitely freely flowing now and my heart has that feeling like someone is cranking on it with a vice-grip. But I want to tell you about this dream during a time of such desperation.

We were already told that Jocelyn had massive brain bleeds, that her quality of life would be nothing short of terrible and that we should consider "letting her go." I remember it was like Justin and I never even heard what they were saying or at least we definitely weren't processing any of it. I don't remember how many nights I cried myself to sleep and yet at times there were no tears left. One night in particular I was thoroughly exhausted and fell asleep the second my head touched the pillow. During my dream I was watching Jocelyn in her incubator while the staff bustled around the NICU like they so often did. I didn't talk to anyone...didn't say anything at all...it was like no one knew I was secretly standing there watching. It was like I had tunnel vision, a direct visual shot right to my baby, and then everything went quiet and I could suddenly only hear her. In my dream I remember thinking "why can I hear her? She's just baby...is that really her." I remember slightly opening my mouth to say a silent, breathy "awwww" in amazement as I saw my baby girl jumping up and down in a what looked like a mini Jenny Jump-Up and laughing. The laughter was that of an angel and unlike anything I had ever experienced in my entire life. It was the single most beautiful thing I had ever heard. She was pushing like mad with her legs and bouncing off the sides of the incubator which only fueled her laughter more. She wasn't in any pain, had no fear, there wasn't anything "wrong," she wasn't "different." In that moment she was carefree, genuinely happy and wanted to be here. It felt like I was standing there watching her for hours taking mental snap-shots for future reference. I just couldn't seem to look away from what was for me, a majestic sight. My own personal excitement during the dream eventually ripped me awake, but in that brief moment of when you are half asleep and half awake, I felt nothing but peace, love and affirmation.

When I began to truly wake up, those peaceful feelings quickly turned into what reality had set before me. However, I knew then what was true...what was real...and continually clung to it. Jocelyn was meant to be here with us and we would not be letting her go. It was like God was telling me, "I plan to bless you endlessly with her beautiful laughter and spirit...this is my gift to you my daughter." I cry now even typing this because I knew then, and I know now, that is EXACTLY what God told me and He gave me His promise. We have had more scary times in nearly two and half years than I would ever wish on anyone, but His promise remains true as EVERY.SINGLE.DAY I am showered with endless smiles and giggles. So maybe Jocelyn isn't bouncing around in some contraption or off the walls, but so what, she's with us, is happy, healthy and ours.

I agree with Mary Beth Chapman when she wrote, "...it's in the most unlikey times and places of hurt and chaos that God gives us a profound sense of His presence and the real light of His hope in the dark places" and that I can only find them if I choose to SEE!!!

2-in-1

I have been needing a light-weight communication board for quite some time to assist Jocelyn and I, so today was the day I finally made one. I am not quite sure why its taken me so long considering it cost less than $7 and took me under 10 minutes to make this simple little thing.

We actually already have a 2-in-1 board that came from the Kansas Deaf/Blind School and it works wonderfully, but its heavy and bulky. I know with a light-weight board it will be quicker and easier to stay consistent with our communication efforts.

The 5 things I used:
1) Poster Board - because its very sturdy, cheap (it was even on sale!) and light-weight
2) GO-Write Dry Erase Poster Board - came in a set of 3 and is thin as computer paper
3) 1 large, single piece of black felt
4) Spray Glue
5) Exacto Knife - its easier to use than scissors

 {poster board & glue -- there is even lots of board left over for whatever}

{black felt & dry erase board}

All that's needed is to spray the glue on the back of the dry erase board, stick it on the poster board with matching up the corners, and do the same thing with the felt. My only warning is to be careful not to get the glue on the dry erase part when spraying or with your dirty-little-glued fingers! ;) Since the dry erase board sheet was smaller than the felt, I cut everything to the size of the dry erase board sheet. Easy-peasy for sure!!

I'm so excited start using our board later today and especially since its both functional and light-weight!

Here's what it looks like -- pretty simple but will be very useful!!

 {Now we can practice writing indefinitely! Ha!}



{Sequencing tasks -- 1st we get in car, 2nd we ride bike}

Adapting

When you have a kiddo, and a mighty fantastic one at that, that has motor and vision issues, playing with the normal everyday toy poses a big challenge. For Jocelyn, she has difficulty with both fine and gross motor, and has CVI (Cerebral Vision Impairment) which only makes reaching, grasping and processing that much more difficult. When you consider buying "special" toys to play with, you have to think twice because they are out of this world insanely expensive! Over the last few years I'm proud to say that I have become increasingly better at taking regular, inexpensive toys, and modify them to suit Jocie.

Take this puzzle for example, it cost under $5 at Wal-Mart and can be easily enhanced to help a child with motor and vision issues so they can be successful at playing and learning. The little red peg that you see attached to the puzzle piece is super small and something that no matter how hard Jocie tries, she just can't grasp them. It probably is a combination of both the peg being small, and the fact that a red peg on a red colored shape is hard for a person with CVI to process.

So what did I do? I went to Hobby Lobby (my guilty addiction!), and found wooden pegs for $2 that I could glue over the original red pegs. Lots of different types of glues work, but I used liquid cement (its what I had), and then colored the top of the wooden pegs black with a sharpie pen. By doing this "build-up" technique and then coloring the top of the peg black, not only is the puzzle piece easier to grab, but easier to see!

Even with gluing and coloring, this took maaaaaybe 5 minutes but saved probably $30-$40.

Also, to help with matching, I colored the bottoms of each puzzle piece with the corresponding color to hopefully help Jocie that much more.

{"Blue with blue babygirl!"}

Jocelyn loves taking puzzles apart and now she can do it successfully!

Shawnee Lake

Isn't this beautiful? No? Then how about this...

Or this...

I have officially decided that Lake Shawnee was created just for Boogie and I. We venture the short 2.5 miles from our house to the lake nearly every morning for Jocie to ride her trike. We typically get a good 1-2 miles in and it is sometimes the best part of the day. This place is so peaceful and beautiful...the perfect little oasis. Don't get me wrong, I crave my tropical dream spot daily, but for now, this suits me/us perfectly.

They even have my favorite trees! I love Willow trees and how they sway in the wind...they're almost mesmerizing.

My favorite part of going to the lake is that there are sidewalks around the whole thing, big sidewalks, and Boogie can ride her bike freely. Her smiles and chattiness is priceless for me!

{Chatting away!}

This is definitely an activity, therapy...whatever you want to call it...that we both enjoy! I'm beyond thankful that there is special equipment, like this AmTryke, that allows Jocelyn to enjoy a trike just like any other kiddo. She loves the wind in her face, being outside, feeling her body MOVE and again, you just can't buy that.

{Mama loves you Princess!}

Funniest Card

Be afraid...be very afraid...proceed with caution!

WARNING!!!

The picture you are about to view is not for virgin eyes or the weakened stomach, although proceed if you want a good laugh!

This is a birthday card I got in the mail yesterday, but didn't open until today since I didn't check my mail. 

Anyways, I opened this card and thought "OH MYLANTA!!!!" The inside of the card reads "See, there are things more frightening than having another birthday." I seriously about died laughing and couldn't seem to stop. This is the funniest card I have ever gotten and had to share it! I love everything about this card from his hat, to his hair and rockin stach, to his backpack and booty shorts! Hahahahahahaha What a way to ring in the new decade! Thank you Greg and Kristi for such a good laugh this morning - definitely a great way to start the day!!!

Random Thoughts

- Since I'm now 30, I thought this morning was a fabulous one to make my very 1st homemade cinnamon rolls! They were actually not difficult at all, just time consuming with making the dough, letting it rise, doing the filling & glaze, and then of course letting it cook. I was even able to roll them real tight so there were lots of real thin layers just the way Justin likes them.

I have to be honest, I was surprised I got these suckers rolled out. Even though I've been on my own for over 10 years, I still do not own a rolling-pin. I mean, c'mon, how often do you use those things. Well, today I needed one but what I did have and worked great, was an unopened jar of queen green olives! Ha! The jar was heavy, smooth and with a little dusting of flour, it worked like a champ. The best part about making the cinnamon rolls is letting it cook because the house fills with the delicious scent of bread, cinnamon and sugar and you know the eating of the yummy, ooey-gooey part is coming soon!!! They were AWESOME!

- I think I spoke way too soon about Jocelyn sleeping better. Don't get me wrong, the weighted blankets have and continue to be a God send as she seems to sleep more deeply, but only after 2-3 days of sleeping-in until after 6am, she is now back at getting up at 4am. You would think after over 2 years she would "grow out" of this, but sadly, it doesn't seem to be happening. Sometimes we let her whine and cry it out for a while, and then other times it just doesn't work because one of us needs some sleep and that needs to be Justin as much as possible with him flying those Blackhawks. Something about flying expensive equipment and how it can be dangerous just makes me seem to think he needs a teeny-tiny bit more sleep than me.

- I've ran nearly 20 miles in a week and pretty thrilled with that number after taking a little hiatus. Next week my goal will be to focus on a different cardio such as Tae-Bo (I love kickboxing) and then I'll switch it up the following week again to keep interested and the body guessing. Sounds like a good plan anyways. :)

- Last Thursday Jocelyn got discharged from Occupational Therapy for at least six months. When we went to therapy on Thursday, that was the last thing from my mind. However, after discussing things with our therapist, she felt we had everything we needed to continue our own OT regimen and that Jocelyn had made enough progress to take a break for a little while. I am all for taking a break from therapies as I think it is good for both the person and the caregiver as long as there is no back-sliding etc. I think this will be a great opportunity to do different things or even actually be able to stick to a more routine schedule at home. I'm pretty excited as this is our first break in therapy so hopefully when we do resume OT, we will have new skills and be set to impress!

- I'm terribly excited for the latter part of August as several of our friends, Justin's co-workers and my girlfriends hubby's are coming home from a long tour from Kuwait!!! It will be so nice seeing my friends have smiles on their faces, and a complete home again with full and happy hearts. We had quite a bit of things going on with Jocelyn, pretty scary and unknown things, so fortunately Justin was granted permission to come home from Kuwait early which was totally unexpected. There are no words that can express my gratitude for the Army allowing Justin to come home to be by my side through everything, and luckily over the last several months all has been okay.

- The Powers' family has a new business now!! I'm sure there will be several as we don't want everything put into one pot, but the business name is JJNA Enterprises, LLC. What does that stand for? Justin, Jocelyn and Angie!!! Might seem silly to some but my heart about exploded when Justin decided that was going to be the name of our first business in honor of us...our family! Justin said I can now add "business owner" or "entrepreneur" to my resume hahaha uhm, you bet!

Birthday

Yesterday I talked about turning the big 'THREE-O' and yep, I'm still excited to be starting my thirties!

I spent most of the day with Jocelyn doing our normal routine, but I also got to talk to a lot of people on the phone, through texts and the infamous social network Facebook. I know some people hate social networks and I can see their point, but its really nice to be able to hear from people that are so far away, drop a quick instant note to let someone know you're thinking about them and on days like your birthday, all your friends and family make you feel...well...like a rockstar! ;)

Thank you for the birthday wishes it made the day very special!

We really didn't have anything planned for the day, other than being together and going out for a nice supper. Well, let me tell you how the evening went.

Justin and I got dressed-up, well casually dressed-up, and planned to head over to Lawrence to try a new seafood restaurant called Anglers that we heard about.

On my big day, I definitely made sure I snapped a picture of me with my love.

 And of course I also had to snap one with our cute little stinky.

Once we were ready to go, we all loaded up in the car and headed over to Lawrence with Mass Street being the destination. We drove down Mass one two three times and still couldn't find this so called Anglers. We had an idea of where it was at and still no luck. While Justin was driving around, I was texting my friend Cherry, and she sent me the address and said she called and they were open until 9pm. So we thought, lets park and go take a look. Turns out there was no sign for Anglers and they had moved...next door. So where is Anglers now? Now Anglers is part of a 3-in-1 restaurant that is called "The Orient, 'Oh Boy! Chicken', Anglers" which basically serves a little bit everything which was not really what we were going for. We were so disappointed. I mean really, who combines Asian, fried chicken and seafood when they were clearly three different restaurants. They even handed you three different menus when you sat down, one for each of the three restaurants.

On top of everything, yesterday was this "3-in-1 restaurant's" grand opening and we were shocked that they even opened with the huge mess and disorganization they had going on inside. We should have left, but we didn't and I'm not sure why we didn't other than it was getting late and we were hungry. The decor inside was comprised of cheap diner furniture, a ridiculously huge 'Oh Boy! Chicken' sign on the wall and tons of Asian influence decorations. I probably sound so snobby, don't mean too, but it definitely gave us a bad first impression, and that first impression did not improve as things carried over through dinner. As Justin mentioned, we felt like we were on an episode of restaurant impossible.

Once we got seated, we ordered drinks. We were going to order tea but the lady said they were out. I thought, "well I can wait for some to be made," and then she told me they were totally out of tea bags. We went to order something else and again they were out of that as well. We quickly saw a theme forming and I kept thinking "isn't this your reopening day?" I told Justin, this is not going to be a good experience. After ordering drinks, I needed to use the restroom and also change Jocie, so I grabbed our stuff and ventured off through the maze that was set for you in order to get to the restroom. The owner and waitress stopped me and a made a big...I mean huge...ordeal about how they didn't have a baby changing station in the bathroom. I told them "I figured that, that's why I have a full-length towel to use" (I carry one in the bag just for things like this). The owner was refusing to let me change her in the bathroom which totally caught me off guard and I wanted say "well what the heck do you want me to do lady?" She then directs me over to a different booth, and insists repeatedly to change Jocelyn right there, in the middle of the restaurant, because it was more comfortable and cleaner for us. Ha! Now, with looking around the place it was pretty much just us (that should've been a big clue), but I couldn't help but think "you really want me to change her diaper where others are eating?" It was a very sweet gesture, and we did change her there, but definitely one of the many odd things I seem to continually experience.

We went ahead and ordered our food, blackened salmon for me and coconut curry chicken for Justin, and the food wasn't completely terrible despite our given first impressions. We had hoped for a relaxing supper with maybe a tasty martini, but we simply tried to eat the food while the waitress apologized for nearly everything (I felt bad for her that she felt the need to make so many apologies as it wasn't her fault). Without a doubt, that will not be a place we go back to again though.

After supper, we decided to stop and grab some frappuccino's from Starbucks, both the caramel coconut and the mocha cookie crumble are both equally delish! While I was getting the drinks, Justin grabbed a Redbox DVD called Casa de mi Padre which starred Will Ferrel. It has Will Ferrel in it, how bad could it be? Double strike out!! hahaha It was all in Spanish with English subtitles and seriously may have been the worst movie we've ever seen.

So all in all, the evening didn't particularly go as planned but come this morning we reenacted our night out and scenes from the movie which provided a lot of comical relief. That's just how we roll! And like I said, I got to be with my loves so no matter what we do, if we do it together, that's all I ever want and need!

Dirty 30's

Today's My BIRTHDAY & I AM 30!!!

Needless to say, I'm pretty pumped about turning 30 today! I've earned my 30 and excited what I have accomplished in my 30 short years of life. The best part is that I really feel like I'm just getting started!! I mean, come on, there are Olympians in their 30's so it's gotta be a powerful decade to be in!! :)

Sometimes when I reflect on being THIRTY.YEARS.OLD (sounds so weird that I've been here so long), but I can't believe how quickly time has flown by and how many things change in three decades. At 10, you know nothing about the world except for what directly applies to you. You're a kid or as other people say, including me, "a baby." Then the next decade you're in your 20's, officially an independent adult, maybe married or have kids, have a career, own big girl possessions like a car and a house, and sadly, are often so far away from many of the people you love. You learn so much about yourself and grow confidence in your abilities, hone-in on your strength and weakness to make a better you and you're ready to take on the world. Now that I'm entering my 30's, I feel like there are so many more things to accomplish and experience. I know it sounds cliche, but I truly feel like "the best is yet to come!"

The things that I love most about being 30 in no particular order:

1. I can look back and have such a sense of accomplishment. I can be proud that I attained 2 bachelor degrees, travel throughout the world (there is much more to see though and I will see it), how enriched my life has been by others, and I've been successful in both finance and love as we have everything we need physically and I was lucky enough to find a phenomenal partner in life. My greatest achievement? Our beautiful, inspiring daughter Jocelyn. It is such an honor to be her mother, sometimes the path is bumpy and down right exhausting, but man am I lucky!
2. I have confidence in myself and my abilities to care for my husband, daughter as well as myself.
3. I feel like I have achieved balance in my life when at so many times there was pure chaos. Ask me again in a week and I might tell you that balance is long gone, but for now, in this moment, I feel centered.
4. I have never felt so beautiful both on the inside and outside. I may not be the supermodel you see on TV or in tip-top physical shape, but that is okay because I am a pretty damn good ME! I feel equally beautiful with or without make-up and my hair all fixed which once was not the case in the past. I may not always think, say or do the right thing, but I sure try and I know my heart is in the right place even if my mind or mouth isn't.
5. I know what it feels to both love and feel loved. Some never find that in their lives, even if it is right in front of their face.
6. Even though there are no guarantees in life, I feel a sense of security and peace even though all around us things are so topsy-tury and in disarray.
7. I feel more permanently settled (well, unless the military changes our minds). I can't tell you how awesome it feels to have a home that we love and know that we will be here longer than a year. Let me say it again...I love having a place to call home! We won't be here forever and ever as we will move to our dream destination after Justin retires, but we are going to be here a long while and there is something to be said for planting some roots.
8. I GET TO BE A WORK-AT-HOME-MOMMY! I see so many that are my age that have to work outside the home, some want to work (I'll admit I do at times too), but what a blessing to get to have the choice. If you would've asked me in my 20's what I thought I would be doing at 30, this would not have been on the list I am sure, but boy am I glad that this is the case as most days I love it.

As I sit here my mind is flooded with a millions thoughts faster than I can process and type. So, I'm going to stop typing and get to enjoying the day! Tonight we are going to go try a new seafood place because I'm craving some mean Mahi-Mahi and since its my special day, my non-fish loving husband is taking me there! :)

Do-It-Yourself Toy Box

Pinterest.

What an amazing resource!

A while back when looking up ideas for Jocelyn's therapy room, I ran across a blurb about how to convert diaper boxes into a unique toy box. I thought to myself "I could surely do this, and they would be the perfect size to keep toys categorized." I read the "how-to" and kept thinking "there has to be a quicker and easier way!!" Well, I completed two fabric covered toy boxes today during nap time, and it only took me 30 minutes. Uhm, yes, I'm pretty stoked about it and have to brag because nothing I do is ever easy or that quick hahaha!

I totally love them because they are definitely one of a kind! :)

What I used:
2 - Diaper Boxes
2 - Homemade curtain valances (courtesy of Grandma Garlow - and using a valance means that the fabric already has nice smooth, even edges which cuts time in half)
Elmer's Spray Glue (it didn't take much at all)
Several Pieces of white card stock
Scissors

First thing first, I took the diaper box and cut off the top flaps so there was nice even rim. The next thing I did was take the box outside and sprayed each side with glue while pressing on the white card stock. I decided to cover the box in card stock first so that it would hide the writing and colors on the box because I didn't want all of that to show through the lighter pieces of the fabric. I really wasn't pretty with applying the card stock because who cares, it won't be seen.

Here's what the first 2 steps look like.

As a side note, originally we did Jocelyn's baby-room in sock monkey's and we loved it. Now that we are in our new home and have beautiful wooden window blinds, we don't want to hang curtains, but wanted to put the hard work that was put into these to good use.

Here is what the valance looked like prior.

Once the whole box was covered with the card stock, I immediately sprayed the card stock with glue and begin to cover it with the curtain valance. It was so simple, spray one side of the box, apply the fabric, pull tight, turn box, spray again, apply & pull and repeat, repeat, repeat until completely finished. Seriously, so simple.

After all the sides of the box were covered, there was excess fabric above the rim that needed to be folded down, and excess fabric that needed to be tucked underneath.

Here's how I made the slits.

Once I made the slits on top and bottom, I sprayed the cardboard and pressed the remaining fabric over the glue and made it nice and smooth.

Here is one of the boxes all finished.

All that I had to do then was fill the boxes with toys, and since the glue dried so fast, I filled them within 5 minutes.

I had one box for visually/sensory stimulating toys.

And one box for tactile stimulating toys.

I couldn't be more thrilled that this was (a) crazy simple thing to make and (b) only took me about 30 minutes to complete which also meant that I had left over time to do something else before nap time was over! Double score!!

Replacing Mic-Key

It's no big thing (well not now anyways), but today was the day to change Jocelyn's Mic-Key Button. We typically change her button around every 3-4 months. The professionals say the buttons can last up to 6+ months, but we've notice after about 3 months or so, the button is hard to close, or the flap begins to tear, etc.

Even with being a nurse, changing this button can be intimidating, but I think that has more to do with actually doing this to my daughter more so than the actual task.

Before we begin, of course we wash our hands! You have no idea how many times people forget to wash their hands before they want to do something with Jocelyn. Its so simple and can prevent so many other problems. Ok, I won't get on that soapbox.

After washing our hands, I open her g-tube supplies and start to get everything ready. Here is a picture of Jocelyn's tube feeding kit.

{Included are 2 different feeding extension sets, the

Mic-Key Button and both a 20mL & 5mL syringe)

Once I know all the parts are in there (sometimes your missing some pieces which is always a fun time), I fill the 5mL syringe with 4mL of regular tap water (no more than 4mL because it could cause the balloon to rupture). Next, you attach the syringe to the Mic-Key Button and inflate the balloon with the full 4mL of water to ensure the integrity of the balloon like you see below.

There is only one way to attach the syringe so you can't mess it up! :) The port that you attach it to also has the letters 'BAL' to stand for 'balloon' to help you remember. Once you know the balloon is good, you draw the 4mL of water back out of the balloon to deflate it so it can be inserted. I leave the syringe, with the 4mL of water inside, attached to the button so once I have it in the abdomen, I can push the plunger without fumbling through it. Also, to make the balloon glide into the abdomen with greater ease, I roll the deflated balloon through some kind of lubricant like Astroglide or KY Jelly which only make things more comfortable for Jocelyn without causing any damage to the balloon.

Once I've got everything tested and ready to go, its simply time to switch this sucker out! I always make sure the skin around the old Mic-Key button is clean before starting, and I have Jocie lying on her back with the supplies next to me.

{Her sweet, kissable little belly}

All that's next is to attach a different 5mL syringe to the 'BAL' port on the old Mic-Key button, and remove the water that is inside the balloon. Once all the water is out of the old balloon, lift up on the Mic-Key button and out it comes. What is left is a little hole like you see below. Don't let this little hole fool you though. It is really important to note that you should change a g-tube button on an empty stomach because this thing can spew like crazy if the tummy is full.

{This looks so weird to me now that I am use to her having a button}

Without too much wait time, I slip the new Mic-Key button right in and inflate the balloon with the 4mL of water. Wallah! All finished and truly this only takes minutes from start to finish. No tears, no whining and we have a fresh, new Mic-Key button.

{When they are new, the buttons are so fresh and white!

The gastric juices change the color overtime}

I still clearly remember when I had to change Jocelyn's Mic-Key button for the first time and thought I was literally going to die from a panic attack. I kept thinking, "I can not do this...I didn't even want this stupid thing in the first place...this is not fair to ask me to do this to my daughter..." I know I am a nurse, I know this, but that doesn't mean a thing when it comes to your baby. And let me tell you, changing a g-tube is NOTHING compared to having to repeatedly insert a NG-tube down your babygirl!!!

THAT WILL BREAK YOUR HEART!

Before Jocelyn ever got out of the NICU/Special Care Unit, all the physicians were saying "She's going to need a g-tube...we need to put one in." I'm sure they felt they knew what was best, but they also didn't know us and that we would try everything in our power to be successful because that's who we are. We fought them, and won, because I felt like she and we, deserved the chance to try and be successful with eating and drinking independently.

We were successful for a long while until her body's demand for fluids could not be met despite all our efforts. When push came to shove, I had to realize that we were spending the bulk of our day simply trying to drink enough to have at least 3 wet diapers/day, and I was dang near force feeding her. It's devastating when you feel like you can't provide the most basic needs for your child, and you feel defeated because no matter how hard we tried, it wasn't enough. The point I had to realize was that we did try...we tried! And just because we have a g-tube now, doesn't mean we don't keep trying. Only now, we are able to do so much more during our day and it doesn't solely revolve around eating and drinking. Since getting the g-tube we are able go and do things together and with others, actually do therapies and learn, we enjoy our day, have fun...we actually LIVE now!

There were a million reasons for why we did not want a g-tube for Jocelyn, but the top 3 reasons were probably the following:

1. It was another invasive procedure to add to her already super long repertoire of surgeries. The thought of her having to endure the pain and recovery of a another surgery was horrible, and not to mention how it can cause set backs in achieving our goals.
2. An increase risk of infection because of having a surgery, and also in regards to her previously placed shunt. Her shunt tubing goes from her brain down to her abdomen. Since this is an abdominal surgery, we didn't want to risk getting her shunt infected which in turn would infect her brain.
3. And maybe one of the biggest reasons was in regards to the stigma that is associated with a g-tube. Once a child has a g-tube placed, especially one with the diagnoses like Jocelyn has, its like people automatically view and treat that child differently. Meaning, all kinds of assumptions are made in regards to what will and won't be achieved physically & cognitively, and its easy to write a child off with the thought "well, this is just never going to happen" in regards to nearly all facets of life. I will NEVER accept that type of approach for our daughter...EVER!

I know I've digressed a bit, but hopefully none of you will look at a child, see that they have a g-tube, and think of what they will not achieve. Instead, I pray that we look at one another and see all the unlocked potential that is within!