Family Things

Our last days of September, and first week in October, have been filled with traveling, family and fun.

After Justin got off work on Saturday {that made him working 14 days straight :|}, we finished the remaining, daunting task of packing our stuff which actually meant all of Boogies stuff. It's ludicrous how much we have to pack for her! Once we were all finished and the fab van was packed by none other than the master car organizer Jib-tastic, we were on the road for Wellington and Winfield.

Once we got into Wichita, we took Jocelyn's poor busted iPad to the Apple shop to see what they could do for us. Not only is the iPad glass broken, but so is the screen itself. I guess that makes everything much more complicated -- meaning more $$$$$! Hopefully we will be pleasantly surprised ... I know, I know ... but I said HOPEFULLY!

After the quick computer shop stop, we found ourselves at the new casino between Wichita and Wellington. For a little bit of fun, we stopped and spent some money. Here's my handsome fella ... don't let him fool you, he only lost $5!! Ha!

When we arrived to Justin's moms' house, we had a nice relaxing evening with a yummy home-cooked meal. Isn't that the best?

We all turned in early Saturday night after a busy day of work, traveling and all the normal stuff. Sunday was quite the interesting day for us though. We tried a new protein source (walnuts) in Jocelyn's blenderized diet and it was an epic fail!!!!! In fact, we had our first clogged Mic-Key button! We tried several things and nothing ... nothing! ... was working to unclog that sucker!! We could not believe out of everything we've given her ... mixed nuts, almonds, pistachios, sunflower seeds ... that walnuts would have clogged the balloon??? What??!!!

We ended up having to entirely remove the Mic-Key button, cleaned the entrance and exit of the whole device, and then reinsert the balloon. Talk about a borderline freak-out session!! Personally, I was afraid we were going to be too rough, puncture the whole thing and then be SOL! Luckily, the whole operation was successful! As you can imagine, all that food was dumped and a new batch of "walnut free" food was made for the remaining meal(s).

LESSON LEARNED!!

On Sunday, Grandma and Grandpa Garlow were very sweet and took care of Jocelyn for a few hours that afternoon while Justin and I went out for a matinee. We never get to go to the movies, and we should more often, because it really was pretty wonderful! We went into Wichita and watched the new Resident Evil: Retribution movie which continually scared the ba-jezzus outta me! There was nearly no one in there, oh...except the crazy "worse-father-of-the-year" who brought his 3 or 4 year-old ... oh, and the lady that brought her baby. Trust me, I was literally jumping out of my seat at times, so this was definitely not a movie for a little one. I felt so bad for the little boy because he kept crying and saying "I want to go home daddy ... this is scary." Poor kid, he's guaranteed to be scarred for life!

Grandma and Jocelyn had fun together!

On Monday, before we got to see Papa and Nana Powers, we had a fun day with just the three of us. It was a beautiful Monday morning, so we took Jocelyn on a trike ride and stopped at a school playground so she could take a break and swing. Once we got some exercise in and loaded up the van again, we headed for Towne East Mall in Wichita. While Justin and Jocelyn took off through the mall, I made a quick stop at the JCPenny salon {its been a long time since I've had a hair cut}.

 

The salon was able to get me right in with the sweetest lady. I told her I just wanted a trim with a few layers, and not to worry about styling it. The beautician was fabulous with washing my hair and even gave me goosebumps! As we chatted about our kids, husband and life -- I learned she came to America about 20 years ago, learned English and a lot of other things about the Hispanic culture. She really was the nicest person ... one of those beautiful on both the inside and outside type of people! After she gave me a fabulous haircut, she asked "do you ever straighten your hair?" I said "yes" and she replied "well here, let me just pamper you and do it for you." Usually I hate someone trying to style my hair {I say 'try' because it always looks terrible} and getting your hair styled typically cost more. The lady was so genuine that I figured what the heck, and she did a really good job. After we are all through, I stood at the counter ready to pay. She handed me my ticket and said "thank you ... its no charge today ... I hope your day is spectacular!" I looked at her obviously confused, and that's when she proceeded to tell me that once a month they are allowed to do a "hair service" free of charge to someone and she choose me. I was in disbelief and felt so loved ... I hugged her, said 'thank you' repeatedly and of course cried. The whole time this lady was doing my hair, I never once felt like I was inconveniencing her or not the center of her attention. She knew the definition of customer service, sincerity, courtesy and probably has absolutely no idea how wonderfully special she made me feel.

 

After we were finished at the mall it was time for some lunch. We ventured over to On The Border {a dear friend of mine gave me a free queso dip coupon a month ago and it was begging to be used ... thank you Terri Rowe!!}. While sitting out on the deck of the restaurant, Jocelyn got her blenderized meal while Justin and I chowed down on some chips, salsa, queso, guacamole and washed it all down with some super saucy margaritas!! It was a wonderful afternoon!

 

Once we knew Papa and Nana were home from work, we headed to Winfield to spend some time with them. Poor Papa was going to be having pretty major back surgery the next day (Tuesday), so Boogie needed to give some much needed love and sprinkle her magical fearless powder on him! We of course had a great evening with sporadic cases of telling Papa to relax, go take his Hibiclens shower, go to bed and so forth {do you think he listened? NO!}.

 

The morning of Papa's back surgery, daddy went with him and Nana while Jocie and I stayed back at the house. Hospitals are not a fun place to be to begin with, but they are also a cesspool of germies and our little princess didn't need to be getting sick.

 

After the surgery, Jocelyn and I went up to the hospital to see how Papa was doing. When we got into the room Jocelyn kept staring at him and actually looked concerned ... something we haven't really seen before.



After the surgery, Papa was in good spirits and even with the heavy pain meds on board, somehow he didn't lose his sarcasm :)! Nana and Jocie thought singing might be a good idea as you an see hahaha ... okay, so they weren't singing, but I think they wanted too!

It was so nice seeing family, having some down time and thankful Papa's surgery went smoothly.

Next adventure?

Preschool starts today!!!

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!