Pies, Push-N-Pull & Preschool

Tonight we should all have happy mouths and tummies! I'm going to try a new recipe (and its suppose to be quick and easy). So what is it? Chicken Pot Pie Cupcakes!!! Sounds delish on a cloudy, cool day doesn't it? Also, since its on our Fall 2012 Bucket List and because I seem to be in a baking mood, I'm making a homemade carmel apple pie.

Justin bought some thoroughly disgusting $1 pot pies the other day because he "just had to have one," and the whole time that thing was cooking (which was forever), he was like a giddy school girl and going on and on about how good it was going to be. Mind you, he made one for me too and I was equally as excited -- NOT! So, being the wonderfully thoughtful wife I am, I saw this recipe on a girlfriends Pinterest wall (thanks Amber for finding the fun, tasty stuff) and decided to make it tonight. I'll have to let you know how all of it turns out! :)

When Jocie and I went grocery shopping yesterday, we tried something a little different. Seeing how this last Botox session has made Jocie like a cooked noodle, sitting in the shopping cart is extremely difficult for her. Sitting in the shopping cart is also more of a challenge since I lost the black foam-type seat thingy the Lawrence Infant Child Development made for me that helped keep her planted in one place (I'm pretty upset I left it in the shopping cart a few weeks back). But anyways, the last time we went to the store, it was very difficult for us both and I knew I couldn't do that again seeing how I physically had to carry her the whole time and about broke my back :|!! So yesterday I put Boogie in her wheelchair and decided I would try pushing her and pulling the shopping cart behind me as we did our shopping. To my surprise it went really well. We drew an audience and watchful eyes from time to time, but I didn't have to kill myself trying to help her sit or by holding her, she was positioned well and she seemed to be having a good time which was evident by her endless giggling (she loves going to the store because she gets to touch everything -- or at least I try to get her too! The produce section is an awesome place for talking about colors, smells, textures, sizes, same/different concepts, etc!).

In other news we are actually -- shockingly -- and some may say finally!

 

~*~***STARTING PRESCHOOL***~*~

 

Yep! You read that right. We are beginning "official" preschool next week on Wednesday October 4th at the Easter Seals Capper Foundation Kidlink program. I am sure you can all imagine how difficult this is going to be for me. I must have completely and utterly lost my mind!!!

 

We never had any intentions of putting Jocelyn in preschool (neither Justin nor I ever went to preschool and we turned out just fine ... I think :P). Our decision to enroll Jocelyn in a preschool program is not one we intended to do as we actually have been leaning more and more towards homeschooling rather than public school. Even though we are trying preschool, homeschooling is very much still in the forefront of our minds, but here are some reasons we've decided to try preschool outside of the home:

1. It will only be 3 days a week (W/Th/F) from 8:45am-11:15am. For the same fees they actually provide preschool 5 days/wk, and this preschool is year round. Just because we are leery and seeing how this will be a dramatic change for Jocelyn (and for mama), we are starting with only 3 days/wk.
2. It will be at the exact same place Jocie has received her therapies over the last year and half which will help easy the transition.
3. During those 3 days, Jocelyn will also receive her normal PT, OT and SLP.
4. Every six weeks, for a six week period, Jocelyn will get one-on-one swimming in their indoor pool with her classmates.
5. Jocelyn has no other siblings for continual interaction, and this particular preschool will offer peer models as it contains children 2 1/2 to 5 years-old.
6. And finally, it will give us a chance to trust someone else with the care and education of Jocelyn.

That last reason is a biggie for me! I hate that I don't automatically trust people with Jocelyn, but I'm her mama, no one loves her more than I do, and I still sometimes have to step back, take a deep breath and then approach things differently. Its a lot of hard work taking care of Jocelyn in regards to patience and even physically. So if I get tired or frustrated, I know someone else will too and maybe even more so, which of course is always a worry. However, I also know there is a very good chance that Jocelyn may perform more, or better for someone else, and maybe ... just maybe ... watching and seeing what other kids are doing might inspire Jocelyn to do the same.

Oh and WOOHOO! for us -- in a past blog entry called Busy, Busy, Busy -- I talked about taking Jocelyn to see an Endocrinologist. Well, both the x-ray and lab results came back within normal limits!!!! Yahoo! So it looks like no beginning of precocious puberty for us! So thankful! 

---------------------------------------------------------------------------------------------------------UPDATE:

The cupcake pot pies turned out INCREDIBLE!!! I made half with crescent rolls and half with flaky biscuits. I thought the crescent roll ones were divine and Justin preferred the biscuit ones. Seriously people -- these are the most amazing things I've made and eaten in a long, long time!!! You've gotta try them. The proclamation that these are fast and easy to make was indeed correct. They are actually filled with healthy ingredients too so that's a perk! Oh and the apple pie? It got served with drizzled caramel and a scoop of vanilla ice cream! Tonight's been a delicious night and calorie free! Well, I'm pretending its calorie free -- who cares anyways? :)

 

 



"Welcome to Holland!"

While looking for something else entirely, I ran across a letter today that we were given during our treacherous NICU days.

The title of this letter is called Welcome to Holland by Emily Kingsley. I remembered one of the NICU nurses gave me this story as it pertained to having a child with special needs. I suppose even then it was obvious the road we were about to embark on, and I think this was the nurses way of providing encouragement. Looking back now, its always most appreciated when a nurse can do more than chart and pass meds, and that is speaking from my own personal experience as a practicing nurse. So often long gone are the days when you can take a more holistic approach and also be concerned about a patients' (or patients family) emotional, mental or spiritual well-being.

I vaguely remember reading this story over two years ago (I'm sure it was during one of the many long, stressful days while sitting next to Jocelyn's incubator). Today, I took a second to re-read this story, and although this mother shares her experience of raising a child with a disability plainly and simply, it contains much truth.

Perhaps several of you other NICU mamas or special needs mamas have also read this story, but for those of you who have not, I thought I would share it with you.

Welcome to Holland!

By Emily Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

 

It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

Just as Emily proclaims, "Holland" might not be where we thought we would be, but it has the most unexpected beauty!

Revelation of the Heart

Yesterday, through the mounds of tears, I had a true revelation of my heart.

It's probably been a long time coming and I'm not one (I don't think so anyways) to just spat out everything I'm thinking and feeling in regards to me and my life (not the deep down stuff anyways), but I know if I don't write this out and be honest, I will be able to cover my heart with false lies, justifications or simply not entertain what my soul is trying to tell me.

I was cozy in the recliner watching an episode of LifeCoach on the OWN channel (first time I watched this show) while Jocelyn slept peacefully on me. Truthfully, I was hoping it would be so boring that I too would fall asleep. Wrong answer. Instead, I found myself crying nearly uncontrollably about the reality of how I felt about our situation ... my life ... my future.

There is no doubt that Jocelyn is my world, my love, my life. I have never known love like the love I have for our baby girl. She is nothing short of miraculous! Even though I would give everything for her, it comes with a price. In a sense, I feel like I have given everything for her ... my entire life. In some form or another, all parents sacrifice their "old" or "future" life. Sometimes the reality of the sacrifice being given can harbour some sadness or even resentment. Your ideal life, and the reality of your true life, often doesn't match up. When you feel like there are more withdrawals from your life than the deposits you receive, its difficult to keep giving ... keep pushing forward ... and right now, the withdrawals in my life far out weight the deposits.

There is so much fear in my heart when it comes to Jocelyn. Sometimes I fear that we will lose her far too early and yet other times my fear shifts to her out-living us. That is what is suppose to happen ... children are suppose to out-live their parents. In our case though, I fear what that could mean for Jocelyn. You see, I'm looking at her right now, with all the "needs" she has, and trying to project what things will look like in the future, yet I truly have no idea. What I have to go off of is the fact that I can guess what they would look like if we can't seem to move forward or progress.

When Jocelyn was first born, I think Justin and I were consumed with fear ... so much was unknown. Life is always like that though isn't it? But once we were able to bring our angel home, we felt peace and hope. That first year of her life was definitely a honeymoon phase for us. We were ecstatic to have her home, waking up to her each day, falling asleep knowing she was with us, that she was eating, thriving and happy. As the additional weeks, months and year have carried on, that honeymoon phase has somewhat worn off. What I mean by that, is that reality has set in more. The reality that Jocelyn has far greater problems than you can possibly foresee in the beginning. I sometimes will say "it only takes one choking experience ... or a car wreck ... and anyone could be in this situation." Although true, I think sometimes I say these things to remind myself that this really could happen to anyone, like I need to hear that or something, that there are no guarantees, but in reality, it does not bring much comfort.

We've always been a step ahead of the game when its came to getting Jocelyn the diagnoses needed so we could get the necessary therapies and equipment to help her succeed. We quickly accepted her diagnosis on paper, jumped right in with routine therapy sessions, learned all we could, etc. But what didn't happen, was being able to step back and truly SEE the situation and how our life as individuals, as a couple, as a family ... would be so different than the typical family.

This is when fear easily swoops in like a thief in the night to rob you from anything good you are holding onto.

I have realized that by holding on to the fear, I will never ... NEVER ... be able to move forward as a mother, wife and an individual. Fear is so paralyzing, a stripper of joy and happiness, and a deceitful liar! God made us to be warriors and victorious!!

I am ashamed to admit that at times I wish I could just run away from it all ... pretend we didn't have all these problems and such a hard, different life. That I could pretend this was not my life. Sounds horrible doesn't it? But I think there are many that feel this way too but the guilt of feeling this way is often more than we want to share with anyone. Who wants to feel judged in your most raw moments ... no one. How can you love your husband and daughter SO MUCH and still think such things? Then something occurred to me. Sometimes it is our past that also makes us fearful.

You see, I think I feel even more remorse for having feelings like this at times because this is exactly what my birth mother did to me, my brothers and father. The fact that she was able to walk away from her family and never look back is proof that a person can do that. Does she feel remorse and pain? Perhaps. I thought a long time ago I had forgiven her but I don't think I have. I have always said "I forgive her but still want nothing to do with her." The reality is that I have the ability to forget and I think I've always viewed that as forgiveness. I have come to the conclusion that this is often the reason I can "get over things" so easily ... I just don't think about them ... or ... simply forget. But forgetting and forgiving are two totally different things. I'm fearful that I will become just the same terrible, awful mother that she was to me. Despite that I was given a spectacular mother to raise me and set the example I needed, something deep down feels like I've inherited my birth mother's bad traits, like they have been infused into me, so I fight those bad thoughts I have even more instead of facing them head on and not being ashamed.

In my heart and mind, I know that I am a great mother to Jocelyn, but your feelings can be deceiving. I've decided that since I've realized that feelings come and go so easily, I will demand my feelings to obey my heart and mind. No longer will I be a slave to fleeting emotions because they come and go in an instant, and they will not dictate the way I act and respond. I don't have to "feel" a certain way to know the truth of my heart. My "self-talk" will be one of truthfulness and positivity. I might not always be able to control how I feel, but I can chose how I self-talk.

I was sharing with Justin that until yesterday I didn't realize that I was sad and maybe disappointed that we would not be having any further children. There was a time in my life when I never wanted kids, but that was before meeting Justin. In the early stages when I was pregnant with Jocelyn, I remember thinking "yep, can't wait to do this at least another 2 or 3 more times." Don't get me wrong, Justin and I could have more children, but we won't, as we both feel it would take so much away from what is necessary to give to Jocelyn. She might love having a brother or sister, but we are not prepared to add another child into our family. We feel like it'd just be too much.

Even though I was brought to tears yesterday, it was good for the soul and I was actually able to put thoughts and words to what has been eating away at me, which something I haven't been able to do for quite some time. Sometimes its really difficult to know what is going on inside you, why you think a certain way or respond things.

I hope no matter what all of you are going through, that you truly do know that others have been there, and realize that there are others that have already pushed past that storm to the other side. I've realized that I am trying to reap and sow at the same time. I want to see the pay off for all the effort that I am putting into Jocelyn NOW!!

What's that saying "we want to eat our supper for breakfast?" Meaning, we often want now what is meant for at the end of our lives. If we have what is meant for the end of our lives now, what will be have at the end? I will continue to sow in our daughter, my husband, my family and friends because I believe the harvest will be plentiful. Sometimes its hard to believe that, but I know the promise God has given me ... given us!

Hodge-Podge

Its been a few days since I've blogged and uhm, that might have to do with a little thing called Netflix and the show called The Vampire Diaries. I mean seriously people, I don't watch TV ... I really don't! I find it all mostly repetitive, boring and mindless (although sometimes that's exactly what I need!). So why am I so into the VD show? I have no freaking clue!! I've never seen this show before and when I came across it I thought "hmm, I'll check out an episode" and now its an obsession, and on Netflix, you can watch one episode after the other and oh my goodness ... its bad, bad news and a huge time eater!!!!! Its been the first show in a long time where I go from not liking a character because they are terrible to everyone (ie Damon), to totally loving them. The main girl character, Elena, is actually quite perfect for the role and doesn't irritate me like the Bella from Twilight (I always thought she was so whiny and weak -- very annoying!). But I just can't seem to get enough and I'm finding myself wanting to watch it at naptime rather than working out, watching it at night or early in the morning ... what did I call it? IT'S BECOME AN OBSESSION!!

"Hi, my name is Angie, and I'm addicted to The Vampire Diaries."

Ever since I can remember I've always been into vampires, werewolves, witches and basically all things mystical. I have no idea why its always been interesting to me, but I've always loved reading books or watching movies about these subject matters. I never went all weird or Emo on my parents or anything, but being parents, and my mom in particular, they were always discouraging this type of interest. I remember I always wanted to watch Buffy the Vampire Slayer series and my mom would make me change the channel to something else. I guess they were just being parents, and now that I am one, I can understand. Despite what many have thought and said to me, you can still like this stuff and be a Christian ... I am!

I'm really upset by two things right now...

1. I broke the iPad that we got for Jocelyn over a year ago. I'm supremely upset and there is nothing I can do about it. We use the iPad for all sorts of things for Jocelyn and now it is completely busted. I'm a maximum klutz and often surprised that I can even walk and talk at the same time. I swear door frames move and furniture reaches out and grabs me. We haven't decided what we are going to do, but here in the next two weeks, I was really depending on using it.
2. Jocelyn's new DAFO's aren't living up with what I hoped for. She is such a Houdini when it comes to these things and nothing seems to work. She doesn't wear them for very long, but when she does, I need her feet to be in there good and she just slips that heel right out of them and of course it gets super red from the awkward pressure. Again, not sure what we are going to do about it, but I still have a few things up my sleeve to try.

I've also decided that I would like to have a theme song, or theme songs to be exact. You know, a song that will magically play when I'm walking or running around the lake or out and about in town. Songs like Eye of the Tiger or What Faith Can Do or Pocket Full of Sunshine or Regulate or Courageous or Someone Like You or I Will Survive or Rosanna's Little Sister. I'd pretty much have a whole repertoire of songs ... I would need a playlist ... that I could sort through to make the most appropriate selection. I wouldn't want everyone to have a theme song ... I don't like noise clutter ... but I would want it. Okay, that makes me sound weird, but admit it, it would be cool.

Oh, and there is this book called the I Like Book ... they make them for kids, couples, women, etc. Here's what one looks like:

They come in all different types of colors that you can choose from. My sister got one for me so I could write down all the things I "like" about Jocelyn. We have the green one because that's my favorite color and the color I choose to be Jocie's favorite too haha. Basically, this book provides a child's parents' (or whoever) to daily write two things about their child that they love or "like." It encourages communication, confidence and a positive focus for each day. Not every page is for personal writing (well it could be), but there are also pages for a kiddo to scribble, notes of inspiration and so forth. These are two inserts that I really like:

 

The Eyes of Love

A grandmother and a little girl whose face was sprinkled with bright red freckles spent the day at the zoo. The children were waiting in line to get their cheeks painted by a local artist who was decorating them with tiger paws.

 

"You've got so many freckles, there's no place to paint!" a boy in line cried. Embarrassed, the little girl dropped her head. Her grandmother knelt down next to her. "I love your freckles," she said.

 

"Not me," the girl replied.

 

"Well, when I was a little girl I always wanted freckles," she said, tracing her finger across the child's cheek. "Freckles are beautiful!"

 

The girl looked up. "Really?"

 

"Of course," said the grandmother. "Why, just name me on thing that's prettier than freckles." The littler girl peered into the old woman's smiling face.

 

"Wrinkles," she answered softly.

 

How Do You Talk to Yourself?

A man and his small son were out walking through the mountains and at one point, the little boy slipped 20-30 yards down the mountain side. Finally he was able to grab onto a tree branch and hold on, then he screamed out, "help me!"

This voice boomed back, "help me!"

 

He looked kind of confused and yelled, "who are you?"

The voice boomed back, "who are you?"

 

The small boy was aggravated and said, "you are a fool!"

The voice came back, "you are a fool!"

 

He said, "you are a coward!"

The voice yelled back, "you are a coward!"

 

Just about that time, his father got to him. The small boy asked his dad, "who is that?"

His dad laughed and said, "son, that's called an echo but really its called life. See, let me show you something son."

 

The dad hollered out, "you are a winner!"

The voice boomed back, "you are a winner!"

 

"You are talented!"

It came back, "you are talented!"

 

The dad yelled, "you've got what it takes!"

The voice rang out, "you've got what it takes!"

 

The dad said, "son, that's how life is. Whatever you sent out always comes back to you. The question is, what are you sending out about yourself? Start sending out I am strong, I am talented, and I am the best. I'll make it, I am creative, I am healthy, I am prosperous and I am VICTORIOUS. What you send out is going to come back to you. Don't dare go through life being against yourself.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

I think sometimes we just have to remember how beautiful we are and ensure that however we "self-talk" ... that its positive, encouraging talk!! 

Eat-n-Run

This weekend ended up not going exactly as planned, but that's okay, you just roll with whatever comes. We had intentions of riding "Big Al" during Hippotherapy on Saturday, but our therapist ended up being really sick so all those plans got cancelled. It doesn't surprise me that she's sick though, she's on the go perhaps more than us because she attempts to help so many people. God bless her for loving and caring others so much.

Even though Saturday was pretty laid back and filled with typical activities for Jocelyn, today was filled with yummy eats and shopping.

We ventured down Mass Street over in Lawrence and originally wanted to eat at BWW's (I'm a hot wing fanatic!), but seeing how football season is in full swing, there wasn't an open seat in that place. We always have to think ahead and consider accessibility in places when it comes to Jocelyn's wheelchair, and this place is a tight-fit even when theres not a full house. It worked out for the best though because as we walked on we came upon Papa Keno's (we've eaten here before) and even the slightest thought of pizza gave Justin tunnel vision to the first available table.

At first I was hesitant to eat at Papa Keno's because I've started Jocelyn on a gluten-free diet as of Monday (and now its gluten & lactose-free diet) in hopes to stop the frequent vomiting. Seeing how Jocelyn doesn't really eat by mouth, eating at a pizza place is no big deal. What made me hesitant was that I decided to try to do the gluten-free diet with her (I'm crazy), and of course on this diet you can't have things like bread, pasta ... and definitely not pizza! Well, after a week of being gluten-free I caved and had 2 slices :s ... they were pure warm, gooey, zesty glorious slices though!!!

After lunch we walked down to Garry Gribbles Running Store and I had a gait analysis, tried on a bazillion shoes and then scored these running pumps.

These shoes are the Brooks Ghost 4th Edition and I love them already! I'm imagining that I will be so fast that you'll think you saw a ghost ... Ha! Okay maybe not, but I can hope! :P I've been an avid Saucony fan for many years now, but I've been so disappointed in my current pair that I was open to try any running shoe.

 

I honestly had never heard of Brooks running shoes until today. Come to find out (here's your history lesson for the day ... yes, I'm a nerd and looked this company up), but they have been around since the early 1900's! Brooks is the first shoe company to introduce the natural bend arch support, developed the industry's standard in what a shoes midsole is made up of, created the first running shoe to combat against over-pronation problems and they introduced a women's line of running shoes which were the first running shoes that were anatomically adjusted to women's needs. Pretty cool I thought!

With just getting the shoes I of course haven't tried them out yet, but come tomorrow morning, I'll dominate a few miles in them ... on the treadmil that is. They told me I can run in them for 30 days on a treadmil and if I don't like them, I can exchange them!! Uhm, FANTASTIC!!!

Busy, Busy, Busy

Or at least that is how this mama feels lately.

I'm thinking this is our norm!

Jocelyn and I got down and messy with our first Fall craft this week. On the agenda -- Leaf Coffee Filter Tie-dyes. I'm finding that Boogie hates most all crafts or "learning-type" things we do, but I still keep at it in hopes she's learning and that eventually we will find something she actually enjoys.

 

This activity she enjoyed!! -- well, mostly!

She had absolutely no hesitation with diving right into the paint this time which really surprised me, and not to mention it was going everywhere because she was getting crazy with it. Apparently I watered the paint down too much. As you can see, she was also "tasting" the paint like she does food ... thank goodness for non-toxic! Oh and do you see that? She was getting BOTH hands all paint-ah-fied!

I liked this craft because you only needed coffee filters, watered down Crayola fingerpaints, some computer printed leaf stencils for tracing (that's if you are like me and can't draw) and a good place to get messy.

Here was how her coffee filters turned out after drying, and then I cut them into leaf shapes for her.

Jocelyn makes such good pretties!

In other news, we had an initial appointment with an Endocrinologist yesterday at Children's Mercy. There is nothing scary going on with Jocelyn (thank you Lord), but she has been having really strong body odor for several months now. However, since using Lafes, Jocelyn smells just as clean as she is beautiful! Woohoo for a natural product that works!! But because of the amount of trauma Jocelyn received to her brain after birth, her chances of incurring precocious puberty is greatly increased. The major signs of this happening would be breast development, pubic or underarm hair and so forth. In my opinion these are late signs. Another sign would be strong body odor which has already been occurring. I'm not in the business of waiting and I've learned the hard way to listen to my inner voice, so I asked to have things checked out early. As far as the physical examination, the physician was pleased, but we went ahead and did an x-ray of her hand (to check for increased bone maturation) and some lab work. With the aid of the app called Sparkabilities on the iPad, Jocelyn barely even winced with the lab draw. She's insanely tough! Sometime next week we should find out the good news that all is well and to keep using the Lafes when needed. I can live with that.

Today we traveled to Salina again to see our ICD team. We got to pick up Jocelyn's new DAFO's, have her wheelchair adjusted to accommodate her lovely hearty thighs, and as an added bonus, although it is technically too big for Jocelyn, we were allowed to take home a KidWalker so we can practice with it and decide if we want one.

This time for Jocelyn's DAFO's, we selected a rear-entry floor reactor boot with a blue jean design, purple padding/velcro, and a fun "kids" strap across the ankle. They look HUGE ... because they are! We will have to see if they work, and hopefully they will, so that we wont have to make new ones.

When daddy came home this evening he got to see Jocelyn trying the KidWalker demo out on the driveway. He's her second biggest cheerleader ... okay, maybe its a tie between the two of us!

There's always some kind of adventure we are on and it keeps going as far as I can see.

Tomorrow? Hippotherapy

... and this will be the first time after taking over a month off! Hopefully Jocelyn will be able to ride, and ride well, despite her loss in head control. I'm sure this weekend will be filled with fun stuff! Sleep well guys!

Tasty-Tuesday!

Somtimes all you need is CHOCOLATE & the whole world seems better!

Hope everyone's having a Tasty-Tuesday! :)

Bombarded

The last two days have been a test of my patience and character. I've made a conscious decision to respond differently ... positively ... to those who are so blatantly rude to Jocelyn and I in an attempt to preserve my heart and integrity, and to try and set a good example for Jocelyn.

Allow me to share with you two stories. I'm only picking two stories as I don't have much time, but trust me when I say that in the last two days, I have been bombarded with rude, arrogant and I guess basically those who simply speak more than they think.

So here I am in Wal-Mart of all places (I hate going to big stores because there is almost always a person there that seems to want to share their tiny mind with me), at the customer service desk needing to exchange a few workout shirts (they were really cute so I was excited to get to run in them). Anyways, I take them up to the lady and tell her "I need to exchange these please" and then go about getting a different size. When I come back with my different sizes the lady says "Well, I guess we thought we were smaller than we really are huh ... you had to go up 2 additional sizes." Really lady? I mean, rrrrrrrrreally? Why does anyone comment on the things a person buys? As I stood there looking at her disheveled, uncleaned, oversized appearance I had a million different thoughts run through my head...

Instead of saying, and doing, what initially popped into my head, I looked at her and said "Yep, and I look fieeeeeeeeerce in them honey."

As this lady was doing all the transactions to exchange my items, a different lady was standing behind Jocelyn and I. Jocelyn was sitting in the cart minding her own business and looking all cute when this lady came closer, leaned towards Jocelyn's face and said "Don't you think its about time you lose that pacifier little girl?" When I looked at the lady I asked her "Are you talking to my daughter?" (I knew she was, and not sure why I even asked that, but I did). The lady didn't answer yes or no, but instead replied "Well how old is she anyways? Big kids really shouldn't be dependent on those things ya know."

I think because people say things to us all the time, I know when I'm about to explode. Its like I feel this bomb go off in the pit of my stomach and its contents soar up my chest and throat, then out my arms, fingertips and mouth. The grace of God must've been with me this day because for the first few milliseconds, seemed like minutes, I didn't say a word. Instead I thought to myself, "I'm trying hard, so hard, to learn how to deal with people these days and I have not one, but two nitwits right here at the exact same time. Is this a joke?" I told the lady "I've learned that many people ask and say stupid things because they don't know our situation, so I don't hold that against you." I turned back around to the Wal-Mart employee that was doing my transaction and thinking surely this lady understood that I had nothing more to say to her, but no, that wasn't the case. The lady didn't seem to understand that I didn't want to hear anything she had to say, but she pressed on with asking "Well whats going on with you guys then?" LEAVE ME ALONE!

Ultimately, I did end up telling her that Jocelyn was a preemie and had cerebral palsy which then her whole demeanor changed. I shouldn't have to tell people my whole life story though. Why does someone make it their business if a child has a pacifier "too long?" Its not their kid. Don't get me wrong, I don't mind people asking questions about Jocelyn ... how we do things, what does this mean for you guys, where we get stuff ... I love it in fact because those who ask, instead of making remarks or comments to my daughter in hopes that I hear them, are asking so they can understand or learn, not because they think I'm doing something wrong, want to correct me or feel "they know best."

Enough about those ladies, on to the next story...

So yesterday I planned a full day for us which in part included going to the library to find books about Fall/Autumn, leaves, apples, pumpkins, harvesting, etc. After an early nap and lunch, Jocelyn and I took off. Once we got to the library, I got the stroller out, unbuckled Jocelyn and then picked her up to put her in the stroller. When I picked Jocie up she instantly started vomiting everywhere. We don't know why she pukes, but trust me when I say we hate it as I'm sure she does too, and the fact that it happens so much is exhausting. But anyways, Jocelyn was vomiting really hard, it of course was going everywhere, and I'm trying to hold her in a good position. I've said it before, it is hard to hold a 30+lb kid that has cerebral palsy with low-tone, while they are vomiting, so their body isn't collapsing all the while trying to keep a good airway.

As Jocelyn was vomiting (we were in the parking lot of course), people would pass by making comments and literally just stop to stare. If your going to stop, then help me. There is very minimal common courtesy anymore.

One lady stopped in front of us and said "Gosh is she sick? She is getting puke all over you guys." Another lady told her kid as they passed by "Come over here, you don't want what they have." Finally after Jocelyn was done vomiting, I had the aftermath of cleaning us both up with new clothes (well for Jocelyn anyways ... I just rinsed my shoes off). I changed Jocelyn in the back of the van into a new outfit (didn't even have to change her diaper ... just a pair of shorts & a shirt) and someone in passing said "It's not appropriate to change your daughter in the middle of the parking lot."

Seriously you guys, I'm either going to lose it one day or need some strong anxiety meds to deal with everything each time we try to go somewhere. I refuse to allow people to determine what kind of person I will become because if the world had its way, I would be secluded, self-centered and consumed with hatefulness.

All I can do is keep learning from each experience and hopefully surpass my expectations for myself. I pray I learn more of God's wisdom with how to deal with the general public and society itself.

Fall 2012 Bucket List

In no particular order, here's a mighty fine start to our Fall family-fun time!!!

1. Lawrence Color Run
2. Watch lots of football
3. Make Homemade Hot Coco
4. Visit Pumpkin Patch
5. Go on a Hay Ride
6. Fingerprint Indian Corn Craft
7. Make Pumpkin Bread
8. Carve Pumpkins
9. Roast Pumpkin Seeds
10. Bake a Pumpkin Pie
11. Play in the leaves
12. Make a Leaf Book
13. Leaf Coffee Filter Tie-Dyes
14. Visit an Apple Orchard
15. Make Apple Stamps
16. Bake an Apple Pie
17. Make Homemade Applesauce
18. Hand Print Apple Tree
19. Go to a Fall Festival
20. Read Books about Fall
21. Bake French Bread
22. Make Green Bean Dumpling Soup
23. Nature Walk
24. Make Family Tree
25. Buy/Make Halloween Costumes
26. Go Trick-or-Treating
27. Watch a scary movie
28. Fall Spice Painting
29. Thanksgiving with family
30. Make a Thankful Tree
31. Turkey Handprint Craft
32. Watch the Macy’s Thanksgiving Day parade on TV.
33. Visit Deanna Rose Farmstead
34. Visit Smoke on the Water
35. Yarn & Sandpaper Craft
36. Fairlawn Oktoberfest

I'm really quickly throwing this together but my mind is going & going & going like the little energizer bunny! Yay for fun!

Baffled, Botox & Balloons

Yesterday we had another Botox session for Jocelyn which makes this her 5th go-around (I originally thought it was her 6th, but 5 is already too many in my books so no need to rush into the next one).

On the way to Shawnee Mission Medical Center (we normally go to Heartland, but since our last injections, they had sold out), we thought we would stop at Dunkin Donuts to grab some yummy coffee and a treat to "start the day out right." It was a total and complete disaster! I told Justin, "I'll just run in because it'll be faster than drive-thru"... definitely not the case! There was literally almost no one in there, other than the long drive-thru line, and all I ordered was a cafe mocha & fritter for Justin, and a plain coffee with milk and oatmeal for me. I'm waiting and waiting while other customers are coming in and having their order taken as well. I normally just chill out and wait for things like this, but it didn't help that we wanted to have plenty of time to find this new place since we've never been, the traffic towards Kansas City is totally insane and it's pure craziness with the constant construction.

So anyways, after about 10 minutes or so, I ask the guy, "excuse me, have you made our order" and then I have to tell him repeatedly what I ordered in the first place. Finally, 15 minutes and over $8 later, I walked out the door with super sweet coconut coffee, a tasteless non-mocha, undercooked oatmeal and a soggy apple fritter. Needless to say, this was NOT a good way to start the morning. I was completely in awe ... baffled in fact ... that it was so difficult to get such a simple order and yet it still be wrong. I know I'm ranting ... sorry! Between that and the nutso's out driving, we were getting ourselves all kinds of stressed out. No bueno!

Once we got to the medical center and were settled, things were mostly okay. Everyone seemed a little off kilter though and not communicating well which only fueled the brewing anxiety from the morning. We had to review the injections sites because the middle man transposed sites, ensure the meds were correct (ie Jocelyn needs an accurate weight if uhm, oh I don't know, you are going to be giving sedating meds since its a good idea to ensure the weight is correct so too much medication isn't given), make sure baseline vitals are taken in case there is a change after the procedure (yes, sometimes you have to remind the staff) ... and this would be exactly why I'm "one of those moms."

For the most part we really love our orthopedic surgeon, Dr. Gupta, but we would of course rather not have to see him at all. He's a super energetic physician, extremely opinionated, passionate, forward-thinker and doesn't just consider Jocelyn's joints/bones/muscles. We like him because he is concerned about her diet, supplements, exercise, sleep, bowels and so forth. He follows both evidence-based practice and yet critically thinks about all the children he sees and notices how sometimes he does completely disassociated muscles groups and gets a strange but positive result (ie he will inject a child's latissimus dorsi and then all of a sudden the child can use their hand better which very cool in my books).

Prior to going back for her injections, Jocelyn was given some Versed to help make her sleepy. She was of course already sleepy from being up since before 5am, so after that med, she was down for the count before even going back there. She was so cute though, before the pulse ox was attached to her big toe it continued to make a dinging noise. Apparently in her drug-induced drowsiness, Jocelyn thought that "dinging" was funny because she kept giggling while asleep. It truly was the most precious thing and melted the hearts of everyone in the room. Her giggling, smiling face made any anxiety we had totally disappear and definitely a great way to go off surgery.

Prior to yesterday, all the sites had been previously picked out, but seeing how I can't seem to leave well enough alone, I had ideas about "what was best" or "tell me what you think about this?" which Dr. Gupta always seems to so greatly appreciate! Ha! Well, if I have a concern, you don't have to agree, but I at least want you to stop, listen, think and then we can discuss. No harm in that! :) I told Dr. Gupta that I had concerns about her calves/ankles as she was putting even the best ballerina to shame with those pointed toes. He of course smiled at me, did his little thinking jig and then said "oh ok, we'll put some there too." I know I'm not a surgeon ... I know that ... but I also know our daughter and a heel cord release is really not on my "to-do list" right now. We did a total of 11 different sites and I didn't actually count the number of needle sticks this time (some sites are injected in several different spots so even though only 11 sites are picked, she might actually end up with 30+ needle injections).

During recovery Jocelyn did mostly well with minimal crying which always makes that transition period more tolerable and easier on our hearts. She of course slept the whole way home and was sleepy throughout the day. Justin had to fly last night so it worked well that we were sleepy so naps could be had by all. Of course after Justin left, the vomiting kicked in but it wasn't too awful.

Towards the end of the evening Jocelyn seemed to perk-up a little bit so we thought instead of being stuck in the house for the evening, we would venture the short 2 miles over to Lake Shawnee for the Huff-n-Puff festivities and meet our friends Brian & Dani. The Huff-n-Puff is going on all weekend and its where there are vendors selling things, they have that terrible-for-you type of foods and of course it wouldn't be huffy or puffy if there weren't lots of hot-air balloons! For a $10 donation towards the Topeka Ronald McDonald House, they give tethered balloon rides which we are hoping to do late tonight or tomorrow if Jocie's feeling up to it. I think it sounds awesome, it might not be a full-blown balloon ride, but I'll take whatever I can get! :)

Brian and Dani took such a cute pictures of Boogie & I. She was a mega giggle-box last night which is the best! I did lose the "Mother-of-the-Year" award though because it was C.O.L.D and I had Jocie in a little dress with no pants or shoes ... after a procedure ... I mean HEEEELLLLLOOOOO! I guess I had temporarily misplaced my brain :s Lucky for Boogie and I, we have great friends! Dani disrobed herself of her long-sleeved undershirt so we could slip it onto Jocie's legs to keep her warm. We are so loved!

Dani even caught Uncle Brian attacking Jocie in action. You can almost hear her excitment in these picture!

Here is a taste of one of the balloons for all you awful KU fans! Its been a long while since I've seen a hot-air balloon and was taken by surprise at its size!

Last night I counted at least 10 different balloon baskets, so they seem prepared for all those who want a tether ride. Hopefully they raise a lot of money because its for a great cause and this is a pretty creative and fun way to do it!

Yesterday was a long day ... LONG DAY, but to end it with happy smiles, giggles, friends and balloons? ... Makes me feel blessed!

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Found some pics!!

 

Whirlwind

Things have been absolutely crazy lately, but fun at the same time. Gotta tell ya though, I'm pretty darn exhausted.

My sister Cindy flew in from Virgina on Wednesday August 22nd and we've been on the go ever since it seems. I haven't seen her in a year, so I was excited to get to spend a few days with her before she went to go pick up my super studly nephews from being at their dads house all summer.

We were lucky enough to get to spend about three days together before she was off to see a few friends and hang with the parentals. In light of her having recent surgery we didn't do a whole lot, but we are more about hanging out, talking, watching movies or playing games than actually going out and about.

While Cindy was here, we got to take her along to speech therapy so she could see Jocelyn in action, and I even think Jocelyn showed off a little bit for her auntie. That Friday we traveled to Salina to see our beloved physical therapist, Joyce, to cast some new DAFO's since Bobby chewed-up hers and because she has pretty much out-grown the current pair. While we were there, I also got to see my sweetie-pie of a friend, Allison, and she even had time to visit with us for a little while which was so lovely. The trip to Salina seemed long since the weather was terrible and at times the rain was coming down so hard you couldn't even see, but Aunt Cindy got to help pick out Jocelyn's design on her boots so they will be even more special. Who knows, maybe this will be the pair that we'll see big results with?

Of course Aunt Cindy gave Boogie lots of smooches while she was here -- hopefully enough to last another year if need be.

One of the things that Boogie loooooves for Aunt Cindy to do is sing sing SING! Singing is something they do together all the time via Skype, so it comes at no surprise that she'd want it on demand while she was here! Two of Boogies favorite songs are A Poor Old Slave and Gilly Gilly Oseenfeffer Katzenellen Bogen by the Sea.

Its been several years since my sister and I have had pictures together, so it was nice to snap a few.

After my sister left with my parents and picked up her boys, they came back to our house to finish out her stay. It was so fun getting to see my nephews Donnell and Tristen again. They've grown up overnight it seems (that's always the case) and still can't believe they are 12 and 10 years-old. Time goes too fast!

Donnell is now almost as tall as me and Tristen is still a cute little shrimp, but I know his time is coming soon. The first night the boys were here, Justin helped them set up a tent in our yard (we live in the country so we have a huge yard) so they could camp outside one of the nights and roast marshmallows. That was sort of a failure ... epic failure in fact ... Tristen didn't last 30 minutes and I woke up to Donnell watching TV on the couch at 1:30am. Needless to say, it was a sleepless night for all, but we wanted to try something new with them ... they are boys, don't boys like that kind of stuff?? But anyways, the next day Justin was able to get us into the flight facility at his work to see all the Blackhawk helicopters. The boys had a blast climbing in and out of them, checking out all the equipment and repeatedly would say "I can't believe Uncle Justin flies these big things." It was pretty cute and I had fun getting to see them so excited!

On Saturday September 1st, the family all left early that morning to head back to VA, and Justin, Jocelyn and I headed out for Kearney, Nebraska for a wedding reception. My friend and fellow nursing classmate Mickayla married her sweetheart Michael, and we wanted to be there to celebrate with them.

It took about six hours to get there, but we stopped at an amazing BBQ restaurant along the way in Nebraska City. Mickayla (she was the one that sent me that awesome care package a couple months ago that I blogged about) looked absolutely stunning in her wedding dress, and it was wonderful getting to wrap my arms around her and give her a great big hug! Its been several years since I've gotten to see her. A double score for me was that my other nursing friend Nicole came as well and we all got to hang out for the night. That was the first time I got the chance to meet her little boy Thayer and pictures just didn't do this squishy-faced sweetie justice!

We spent the night talking, laughing, eating and dancing. The night went entirely too fast and Jocelyn loved every minute of it. Between Justin and I, we danced every ounce of energy out of her. I honestly think she laughed from 8pm until 10:30pm ... non-stop ... no joking! I don't know how she laughs so much but we love it!!

I would post pictures of Mickayla, Nicole and I but of course I'm not awesome and didn't take any. :s Somtimes you just have to not worry about pictures and enjoy the moment. Lucky for us though, Nicole did take a few pictures and there was one that was super cute of us three, and then there were some that I seriously looked 6 months pregnant. Say what? How do I go from getting asked "You look amazing, have you been working out?" to "when are you due?" If those pictures ever get posted by Nicole, she better do some cropping that's all I gotta say hahaha. Oh, and just so you know how lovely my husband is, I told him how terrible I looked in the pictures and he says "Well, I told you to wear the other dress ... it was more flattering." Thanks honey ... thanks!

Here is a picture of the three of us from four years ago that will have to do for now. This was when Nicole got married right after nursing school. There is even another friend/classmate in this picture that is also getting married soon. She's the one not wearing green and her name is Jill -- she's a dollface!

After the fun night of celebrating a couples love and seeing my friends, we had to make the long trip back home. On our way back home Justin suggested that we go through Hays, KS which would only add 10 miles to our trip, but also meant that we would get to eat the most delicious burgers from The Q. He had me at burgers, so we headed that way. As expected, the burgers, fries, hot wings, jalapeno poppers and beer were phenomenal (yes, we ate all that ... don't judge ... I'm six months pregnant don't you remember?).

Since we were in Hays anyways and have been looking at vans for months, we decided to stop by Hays AutoWorld. We have bought cars from this place before as they have always had impeccable customer service and wonderful cars. Now, I never thought I would EVER want a van, but Jocelyn has quite a bit of equipment that gets really heavy and I am tried of tearing everything apart just to put it in the car only to have to put things back together when we get somewhere.

AutoWorld had a large selection of Dodge and Chevy vans but we weren't impressed with those whatsoever. Then, to our surprise, we see a 2011 silver Toyota Sienna with only 5,000 miles on it. Our first thought was "hmmmmm, whats wrong with this van?" Come to find out, this van was a repo and nothing was wrong with it other than needing to be in the Powers' garage.

We took the van for a drive (these people don't even ask to see your ID -- a little too trusting maybe?) and we fell in love with it ... or at least I sure did. The sales rep didn't offer what we wanted for a trade in value on my car, but he did offer what we wanted on Justin's car which was back in Tecumseh no less. So what to do? We leave the car dealership, head home, Justin takes a few pictures of his car, emails them, makes a deal and then drives all the way BACK to Hays the very next morning!!! Yes, after all that driving over the weekend, he decides on Labor Day no less, that he would spend his day off and drive over six hours, to get me a much needed van. Needless to say, his lack of compassion regarding me looking pregnant was instantly forgotten.

Here is our amazing van -- or as Justin calls it -- "The Silver Bullet" because shockingly its wicked fast!

This van is a total dream! I truly never thought I would love a vehicle so much. Most of the vans we tried out seemed rickety and cheap, but this one is sleek and comfortable. Look at all that space in the back because of the stow-away seats. What you see in the back is Jocelyn's wheelchair, trike and a few other things and there is so much room for more. Can we say this is a dream? What I love the most is that it is now easy to get Jocelyn in and out of her carseat without nearly breaking my back, and I think she loves having her own air-system because she just giggles and smiles when I kick on the air and it blows in her face -- so cute!

I am feeling amazingly blessed with being able to get this van! Even though I told Justin "NO! We are not getting a van right now" (and I totally meant it), I'm glad he didn't listen to me and did what was best for us as a family. Sometimes I am too stubborn for my own good, but thankful my hubby balances me out.

Once my hubby got back from a second trip to hays in less than 12 hours, we quickly got ready for a BBQ at our house to celebrate labor day (and because we haven't had anyone over since we've moved into our new home). That night we had at least 13 adults and 5 kids at our house and it was a lot of fun. Sometimes I secretly get anxious about having people over because I don't want people to not enjoy themselves, sometimes I can be wrapped up with caring for Jocelyn, and I worry the kids will have a horrible time. It was the exact opposite! The kids loved Jocie's play/therapy room, the toys weren't too baby-ish for them, they had a blast running around outside, and it was all around a wonderful evening getting to chat with our friends. If any of you end up reading this, thank you so much for coming over, chowing down and spending the evening together. Justin and I really enjoyed having you all over!!

Okay, so simply writing this blog might have made me more tired for the fact that I've written way more than should be allowed in any single blog entry, and re-living the past two weeks has made me go "Whoa! That was definitely a whirlwind of fun and laughter, but now I'm oh so tired."

FIRST World Cerebral Palsy Day 2012

You guessed it!

Today marks the FIRST World Cerebral Palsy Day!!!

CP Facts:

• Cerebral Palsy is the most common motor disability among children
• Spastic CP is the most common type as it affects approximately 80% of children with CP
• About 30% of children with CP also have seizures
• Prevalence of CP around the world range from 1.5 to more than 4 children per 1,000 births
• Approximately 40% of those children born with cerebral palsy will have a severe case
• The United Cerebral Palsy (UCP) Research & Educational Foundation estimate between 1.5-2 million children & adults have CP in the United States alone
• Currently, at least 10,000 babies & infants are diagnosed with CP annually
• About half of people with CP use assistive devices including braces, walkers &/or wheelchairs to help them be more mobile

For those of you who don't know me -- My name is Jocelyn and I'm the cutest little girl you will ever meet that just so happens to also be affected by cerebral palsy.

Lucky for me, I have parents that would do anything for me and love me to infinity and beyond!

Today marks a special day of raising awareness for all children and adults that are affected by cerebral palsy across the globe.

In honor of Jocelyn, I took on the World Cerebral Palsy Challenge of taking 10,000 steps a day. So since 10,000 steps is close to 5 miles ... thats what I ran today!

We encourage you to throw on some green or attach that green ribbon to show support for someone you know that lives with CP. From what we have learned from our daughter is that she doesn't suffer from CP, she succeeds in making every day her masterpiece even though she has CP!

Bobby

On Sunday, August 19th, we adopted a dog that was a male grey hound/shepherd mix named Bobby from Prairie Paws Animal Shelter in Ottawa, KS. We looked at several other shelters in Topeka and Lawrence, then made the even longer trip to Ottawa, which of course was where we found our lover of a beast.

Bobby had a previous owner who taught him well, but do to financial reasons, they had to move into an apartment and the apartment that they could afford wouldn't allow pets. We've been there before and understand how difficult it is to give away a family member. Several years ago we had to give away our sweet Tabby cat named Mr. Bigglesworth, and sometimes you are just forced to ensure they have a new or better home.

Here was my baby before I had our little Jocie-Bear.

Because of Bobby's last family, he already knew how to sit, lay, shake with both hands and was exceptionally well potty trained.

Isn't he the cutest? The color of his fur was really cool and he was actually hard to see when laying on the rug in the livingroom.

We have had our bout with Bobby being destructive, and his worse occurrence was when he chewed up Jocelyn's DAFO boots. For those of you who don't know what DAFO's are, they are special boots that Jocelyn wears in an attempt to keep her feet and ankles properly aligned and prevent contractures. Seeing how these cost at least $2,000 for one pair...I literally thought I would kill him! He knew the second I found those DAFO's, and said his name, that he was in trouble. No sooner did I say his name did he take off with his tail tucked and head down which of course made me feel bad for even getting mad. Poor pooch!

Other upsets we had were a destroyed garage door, shredded blankets, torn up garden, lots of holes in the yard and one terrified little girl.

Bobby was as gentle as a big dog could be and would give her kisses, but Jocelyn was terrified of him and she was constantly upset whenever he would even get close to her. He was a big time smoocher, and craved both attention and love. Another battle besides Jocelyn was apparently we are gone quite a bit because of our therapy and doctor appointments and with Justin's work schedule. The shelter was not aware of this, but Bobby has extreme separation anxiety. We tried putting him in different rooms, a kennel, outside...anywhere and everywhere...and he was always so upset and definitely destructive. 

Now, its been greater than a decade since either Justin nor I have had a dog of our own and there are many things that we have forgotten. Unfortunately, because of what Bobby's been through, we think being left alone was so much worse for him. It was absolutely heartbreaking, but we took him back to the shelter because we felt that we couldn't come close to providing what he needed. I know, many of you are shaking your head at use or disappointed in our decision, but we felt it was worse to keep him if it was a terrible fit for all of us. We are not in the business of doing something like this, its been a new experience for us all, and Jocelyn is just not ready in the slightest.

The shelter informed us that there was doggy Prozac and other things we could try, but we just really already have our hands so full with simply taking care of Jocelyn, and adding a dog that requires special treatment just wasn't going to work in our life right now.

While we had him in our care, we provided a tremendous amount of love, fun and treats so we know he got spoiled as much as we could. Taking him back was very difficult so this is all I'm going to say about this right now because it still makes me very sad that he couldn't be a permanent member of our family.