Fluffy Shaving Cream Paint

The other day, Monday I think, I saw a simple idea on Pinterest for making and playing with fluffy shaving cream paint. I thought this would provide Boogie fun with texture, a different sensory opportunity, a way to talk about colors, to be outdoors and did I mention have fun?

You only need 4 things for this activity which is great in my eyes! If you wanted to try it, you would need some shaving cream obviously or you could use Reddi-Whip or pudding for something tasty, food coloring, a few bowls and something to "paint" on.

{I always like how pretty the neon colors are!}

In less than five minutes everything was ready to go because all you had to do was squirt the shaving cream into the bowls, add food coloring and stir.

I saw where some were using paint brushes or other items to paint with, but since those things are hard for Jocelyn to hold, we used the best tools we were given --- OUR HANDS!

Take notes from me:

1. What you see above is entirely TOO MUCH shaving cream!! It doesn't take a whole lot, but I didn't want to have haul Boogie back inside just to make more, so I made a lot which was still way too much! Daddy no longer has any shaving cream which I'm sure he'll be thrilled about when he gets back home.
2. Be careful how much food coloring you use because we looked like we went through a skittles machine for a few days on certain parts of our bodies.
3. Look around and make sure you don't put this anywhere near ants because apparently they are attracted to manly scented shaving cream.

When I originally saw this idea, I was really excited because I thought this would definitely be something fun for Boogie, but sadly we both were pretty turned off by the whole activity. It wasn't bad at first, but then the stuff really starts to stick to you, leaves a really nasty feeling film and overall, this was not one of our more favorite activities as we probably won't do it again. I did get a few smiles throughout our painting party, and I always love getting those!

{Showing Boogie the cream paint}

{Getting started --- this is the expression I made too haha}

{First smile & its a beauty!}

{Silly, messy girl! After just a few minutes we nixed

the paper because it wasn't working so well anyways}

{Being twins! Don't judge our frizzy hair &

sweatiness --- its hot people! haha}

Magic Marbles

There are these little things I was introduced to about a year ago at a friend's wedding called Magic Marbles, but I'm sure they are called other names too.

In case you were like me, these little marbles start out being the size of a pinhead, maybe a tad bigger. Then, when you put them in water, they swell and become squishy little fun "marbles."

Before our super cool couples' wedding, they had a huge container of water with hundreds of green magic marbles floating inside. I of course couldn't help myself and put both arms in, you read that right, I didn't put just my hands in there, I had to play with these things with even my arms! I have no clue why I was infatuated with these marbles except here I am almost 30 and have never seen anything like them.

Apparently I am not the only Magic Marbles lover!

{She cracks me up!}

About a week and half ago, my parents came over to spend some time with us and see the new house. Grandma and grandpa Schneweis took a little detour to Crackle Barrel, I love this place, and found these little marbles and got them for Jocelyn.

At first Jocie was too sure, but give her a firm seat, a metal bowl and let her have at it? You got yourself a damn good time!!!

 

 

 

ICD

Today has been a busy day filled with pros and cons.

Cons:

1) Getting to bed almost an hour later than normal, only to have Jocie keep me awake from approximately 1am - 4:30am with all her jibber-jabbering, hollering, laughing mix! I don't typically mind as I always want to hear her voice, but that was a long stretch of it and especially with having to get up so early.

2) Traveling over three hours in the car. Not really all that much, especially when considering how often we are on the go with all of our appointments, but again, I was super tired. Jocie of course slept most of the car ride both ways.

3) There's been quite of bit of vomiting on Jocie's part today. Makes sense that after I write about how her reflux and vomiting have improved, that she would show me that she's the one that makes all the decisions around here. She vomited a little bit this morning at the beginning of breakfast, but then after traveling, I got her out of the car and a whole truck load of vomit went right down the back of my shirt. Sure, I have tons of diapers, wipes, spare towels and even an extra set of clothes for Jocie, but for me? Nadda thing!!! Ugh! I felt bad for everyone around me because I reeked of vomit and there was nothing I could do about it :s

Pros:

WE GOT TO SEE OUR ICD FRIENDS...FAMILY...SISTERS!!!!

For those of you who don't know, ICD refers to Infant Child Development, and I am specifically talking about the ICD in Salina, KS. Those ladies, and we are talking from the secretaries to the coordinators to the educators to the therapist, are seriously top notch!!! We see them sporadically (not nearly enough in my books, and I'm talking about for enjoyment purposes not therapy type stuff per say), but the visits although short, are jammed pack with great stuff and I always leave smiling because they continue to have such a special place in our heart and they LOVE Jocie SO MUCH!!!

As a side note, this was a super quick trip of down-n-back because there are so many there in Salina (and you know who you are) that I would have loved to have gotten to see, have lunch and spend the day with, but we really needed to get back at a decent time today.

One of the exciting parts of today was getting to see the new ICD Children's Center that has just opened. After we were all finished with our agenda, we got to take a tour of the building and it was so thoughtfully built and put me in awe. They had "viewing rooms" for future students, etc to observe a child's therapy without interrupting or hindering the process, each therapy department had their own rooms, they even had specific rooms for audiology & casting and the list just goes on and on! Did I mention it was so clean and pretty too?

Check part of this beautiful place out!

Also, so much of the building was created just as it should be --- with the children that need the services in mind. For instance, the hallways were extremely wide and doorways oversized, small foot stools in the bathrooms, unisex bathrooms because its nice to think of the daddy's too, handrails along the walls, and even a lobby had great toys that were easy to play with and that give instant feedback even to a child with the most severe impairments.

Here was a toy that Jocelyn couldn't get enough of while we waited in the lobby. The toy is called Magic Hands and even I was pretty entertained by its awesomeness!

{I have to admit, I'm always excited to see how long

and how well Jocie can sit in these big girl chairs!}

The other parts of the building had hallways filled with brightly colored artwork and my favorite? BEAUTIFUL STUNNING PICTURES OF REAL KIDDOS THAT THE ICD HAVE HELPED!!!

So, can you guess who was one of those sweet kiddos??

Yep! Jocelyn!!! SQQQQQQQQQUUUUUUUUUUUEEEEEEEEEEAAAAAAAAALLLLLLL!

For your viewing pleasure:

How did Jocelyn feel about these pictures you ask? She felt like a total ROCKSTAR of course!!! I held her up to the picture of her with the clippie in her hair, and she instantly smiled and couldn't look away. Yes, she does love herself in case your wondering hahaha.

I'd say our pros outweighed our cons --- score for us!

All things aside, Jocelyn and I have been incredibly blessed by today. Getting to see our friends smiling faces warms our hearts and gives us that extra boost in knowing we always have an ear for listening, hands for helping and loving souls to keep us encouraged!

ICD Family - Thank you for what you've done and continue to do for us!

Blenderized Diet

There is a truck load of information out there, and really good information, regarding Blenderized Diets for those who receive the majority of their daily nutrition through a g-tube. Here is a fantastic blog that has helped me with getting started, staying encouraged, trouble-shooting, etc: http://youstartwithatube.blogspot.com/

In case anyone was interested in learning more, maybe someone you know or your own loved one has a g-tube, I thought I would share a little bit of information on the subject as we have been doing this type of diet for our sweet Jocelyn for quite some time.

I specifically remember when we decided to try this diet with Jocelyn, I admit, we were nervous. What if she can't tolerate the food, what if she doesn't get enough of the nutrients she needs, how will we do this when we travel or on the go, how complicated will this really be. First, have you taken a look at the diets of most children, or adults for that matter? Not so perfect huh? Not even close!

So my advice?

Ssssshhhhhh! Quiet your mind, listen to your heart, trust in yourself because this was one of the best things we ever could've done for Jocelyn.

Think about it, would you want to drink a shake supplement for every meal day in and day out? How would your body perform physically or mentally? How well do you think you would feel? How well and for how long do you think you could actually tolerate that kind of diet?

Since we've gone to a blenderized diet, some call it a Whole Food Diet because we do not use any formula at all, Jocelyn has improved in many areas of her health. Her reflux has significantly improved, her bowels are more regular causing a dramatic decreased in supplements to assist her with having a bowel movement, her strength and endurance has increased, we only do three "feedings" a day versus five or more, she can tolerate a greater volume of food and she doesn't throw up every single morning like she use too. Can you imagine throwing up every single day? How awful is that?

When you embark on this journey, you will see there are many ways to go about doing a blenderized diet. A person could blend each individual meal, the whole days worth of food all blended together (this is what we choose to do), count the calories and nutritional value (again, what we choose to do), or simply blend whatever everyone else is eating each meal. Eventually we plan to blend smaller portions of whatever we are eating for Jocelyn's meals, but for now to have greater control so that things can be tweaked more easily, we count calories.

There is nothing mysterious about a blenderized diet and is no different than regular food passing from the mouth to the stomach. Whatever you eat by mouth, your loved one can eat (well, unless they have a medical issue, intolerance to certain foods, etc). So this means you can blend canned foods or fresh foods. Get fancy and do only organic, home-grown or whatever trips your trigger. A lot of people think "canned food? what about botulism or something like that?" Well, sometimes we eat canned foods, we are fine, and so will Jocelyn if that's what we use for the day. If there is something that you think wouldn't be safe to eat, you wouldn't blend it up right? That simple.

Sure, not knowing is intimidating but that should never stop you from anything. Sure, people will tell you its too much work or not an exact science (uhm, I didn't know eating was a science). Sure, people will discourage you because its more difficult for them to help you because of their lack of knowledge. Sure, people will tell you that your child or loved one will not gain the appropriate weight. Sometimes the reasons NOT to do something are longer at first sight, but once you start breaking down all the positive reasons for doing a blenderized diet, the negative reasons seem ridiculous!

***Key Note: When you first start doing a blenderized diet, you typically do lose weight. This often happens because your coming off all the corn syrup in the shakes, but I encourage you to not be alarmed. Do your homework, beef up the calories at first and you will be okay! Great calorie boosters, for a small volume amount, are peanut butter, avocados, coconut oil, etc. All these things only take a 1-2 tablespoons that pack a healthy number of calories and nutritional value.

I could go on and on about blenderized diets, what we have learned along the way in regards to foods that are sticky and make feedings more difficult, or how to blend to get the correct/easiest consistency, how fast to push the food bolus and so forth. This type of diet may obviously not be for everyone, but it makes me feel so good as a mother knowing I'm giving real food to our daughter like nature intended and she's succeeding on it. She has steadily gained 10-15 grams per day which has put her in the 89th percentile for height/weight ratio as I mentioned the other day. With having cerebral palsy, we don't want her being too heavy so what are we doing? Cutting calories but definitely not the nutrition. Replacing lower calorie yogurts, grains and fruits. Yes, its that simple.

So I know I'm getting long winded, but if I can quickly, let me give you a visual of a typical days diet. You'll notice we don't follow a recipe or anything, we simply try to get a little bit of every food group and almost every day is something different.

Here is the most miraculous piece of kitchen equipment that we own. Everything I have read recommended a Vitamix and that is what we use. A Vitamix is a pricey piece of equipment, but I did find out that they have a program that you can get a discount if you have a prescription saying its being used for medical purposes. Also, you could even get a FREE one if you qualified financially. How awesome is it that a company has a program like this for people? Very cool in my books!

{No lie, this thing can pulverize bones, and in my case, it pulverized a spatula!

 Lets just say that was a meal that wasn't served to Jocelyn and a very important

lesson learned about not using the spatula when the machine is in operation!!}

Here was today's menu for a grand total of 715 calories. Each day the calories are different because it's no different than a person that eats by mouth, some days you eat more than others. For a seven day period we are now averaging 725 calories/day:

• 1/2c Grape Nut Cereal (this cereal is awesome with having 90% of daily iron intake & lots of fiber)
• 1c whole milk
• 1/2 can tuna in oil (perfect for protein, DHA source and fats)
• 1 fresh mango (we do anywhere from 1/2-1c of fruit depending on the calories in the fruit)
• 1 handful of fresh spinach (again, often times its 1/2-1c of veggies)
• 1c of yogurt (we keep a variety of yogurts that range from 100cals to 240cals per cup so we can adjust for calorie intake)
• 1 chewable multi-vitamin, 1 probiotic capsule, 1-1000mg glucosamine and 600mg vitamin B12 which is 0.5ml or half the dropper

Through trial and error, it works best to put the more course foods at the bottom of the blender (ie mixed nuts, cereals, etc). So for this meal, everything went into the blender at one time except for the yogurt and meds which were added last. The food was blended on high for 5-7 seconds, then I added everything else (note: I open and empty the capsules contents into the blender rather than drop the whole thing in there), blend for another 3 seconds and wallah!

{The final product. I know it may look gross but the nutritional and

health value is far better than formula no matter how you dice it!}

{The food was poured into a storage container to be refrigerated for all the meals of the day}

{Breakfast that was drawn up into the syringes to be administered. Jocelyn can

tolerate anywhere from 8-11oz in one setting which never happened on formula.

We tend to only do 8-9oz in the mornings as she has a more sensitive stomach at that time.

Prior to administering, we place syringes to in hot water to warm as cold food typically

causes abdominal cramping. I hear so often, "cold food doesn't do that," and sure it

might not when after its traveled through your mouth and down your throat, but this

is going directly into the stomach!}

Right now the magic formula for Jocelyn is to push a 15ml bolus every two minutes which makes her meal times last anywhere from 30-45 minutes three times a day. During her meals, Jocelyn is well supported and we use the iPad as a distraction during her feedings. Some may disagree with our approach and that's okay. I always say you do what works for you!

{Feedings are now one of the most enjoyable things for her and that feels awesome!}

I know this is a lot to digest, no pun intended, but hopefully if we all help each other we will continue to gain knowledge and understanding. Maybe by sharing, if you see someone out in public eating syringes full of food, you won't be alarmed or find it off putting because you'll have an idea of what is going on and why.

Our health is our life-line,

so here's to making it the

best health possible!!!

Negative vs Positive

Today, I’m reminded how much all of us are affected by others’ attitudes. Whether we are surrounded by negativity or positive vibes, no matter what, we are affected in some way or another.

I absolutely hate that a person’s negative words or actions seem to resonant the loudest. Some say negativity has a more significant impact on us because of our brain and the fact that we are partial to negative input and more responsive/sensitive towards it.

I’ve noticed that sometimes these hurtful “things” stay with us day after day, years, or even a lifetime. I read on a friend’s Facebook wall today “stop holding on to what hurts and make room for what feels good.” You read something like this and say “man, I know that’s so true and you would feel so much better if you could actually do this.” I think a person could do this, but it would be no simple task.

Sometimes I don’t know how to get past nasty people and their disgusting comments or the way that they look at Jocelyn and I as if we have multiple heads. Yet on the other hand, some days these things don’t even faze me. So I ask myself, why is it that some days I want to rip someone’s head off and other times just smile and almost pity them?

I’ve always heard it takes five or more positive comments or actions to cancel one single negative. Are you kidding me? When you truly think about this, it’s no wonder so many of us have hurting hearts and harbor resentment or anger. Our brains like to hit instant replay several times a day just to remind us of that person (one that is close to you or a complete stranger) of exactly why you are ticked off, should give them a piece of your mind or have nothing to do with them anymore.

Many of my friends know just how many rude people that we have encountered this past year, and its enough to make you bitter and not want to meet or talk to anyone that is not directly in your close circle of family and friends. The reality is that these people have always been in my life, they are in all of our lives. I have concluded that the world is filled with people just waiting to see how they can hurt you, and it will be forever this way because our world is sinful.

My heart has never been as sensitive as it is now, and I believe all that change the day I found out we were pregnant and became a mother. I’ve never loved the way I love Jocelyn, never had so much pure amazing joy, so much pride and admiration, never wanted to fight for something so near and dear to me, never would stare anything in the face and be damned if I wouldn’t protect her to the death. I believe children soften your heart, make you vulnerable and see things more clearly.

Thankfully, as with sin there is light, and that light can be oh so good!

Today I was reminded, repeatedly, of how a person’s words and actions can be so delightful and uplifting, rather than hurtful and destructive, and that was so refreshing.

Act 1 – A Wal-Mart staff member helped me load several cases of water into our cart and I gave no indication that I needed help, or that I was going to be getting multiple cases. Then, when we were checked out, the cashier was so sweet to Jocelyn and asked if she could have a sticker for her shirt.

Act 2 - The CVS Pharmacist greeted both Jocelyn and I by name, and genuinely talked to the both of us with no urgency in her voice. Meaning, we felt like she really cared and we weren't just a number, or like we were cattle being rushed through the line just to get to the next customer. She not only asked how we were doing in general, but how our move to our new home had been going, if Jocelyn’s hip pain had improved and if there was anything she could do to help.

Act 3 – I left my keys in the cart at the Merc and a customer ran after me to ensure I got them back.

Act 4 – When we hit up our last destination spot, we ran into an old Dillions employee, her name is Tish, who over time has become our friend. She remembered so many things we talked about months ago and followed up on everything. She stood there in the middle of the busy isle to tickle and kiss on Jocelyn which of course Jocie loved.

Act 5 – Once we finished shopping, we had an overloaded cart, and a young cashier opened a new check-out line, zipped us right through and had such a pleasant attitude.

Those were the first five acts of “goodness” or "positivity" that popped into my head as I’m typing. This just shows me that there are probably equal amounts of positive and negative things in this world.  So I ask myself, which one do I want to see the most, allow myself to listen to, what do I want to be driven by? I know each day will bring a mixture of both, but perhaps it really is time to “stop holding on to what hurts and make room for what feels good.”

Hippotherapy

With Jocelyn having cerebral palsy, one of the many therapies that she receives is hippotherapy. Many people do not know what hippotherapy is and what it can do for a person.

Hippotherapy, or horse therapy, is actually a form of physical, occupational and speech therapy all wrapped up into one entity. People usually ask me "why do they call horse therapy hippotherapy?" In Greek, hippos means horse, hence hippotherapy refers to therapy treatment aided by a horse.

Cerebral palsy is such a blanket term used for any damage or disorders, that can occur at any point in any person's life, which typically involves the brain and nervous system. Because these systems are affected, a person can experience difficulty with movement, speech, vision, hearing and sometimes cognition. The diagnosis cerebral palsy is a blanket term because there are so many different forms: spastic, athetoid or dyskinetic, hypotonic, ataxic, mixed, etc. It only gets more complicated when you break down the type of cerebral palsy into subcategories such as hemiplegia, quadraplegia and so forth.

In regards to Jocelyn, she has quadrapelgic spastic cerebral palsy which simply means all four of her extremities are affected. In the future, this diagnosis might change as she grows, develops and as everyone gets a clearer picture of how her diagnosis actually manifests. This diagnosis of course is not all inclusive with everything she has going on, and maybe at some point I'll go into all that, but as for now, I'll get back to chatting about hippotherapy.

During hippotherapy our therapist, which is the lovely Peggy Keller out at LMP Farms in Baldwin City, uses the horse as a therapy tool to improve Jocelyn's nerological function, sensory processing, strength, coordination and endurance.

The two horses that we have used are named Al and Webster. Al is the easier of the two horses as he has a more even gait, not as wide and more evenly tempered. We've only rode Webster a handful of times for a "challenge" as he is wider and has a longer stride (which means more trunk control is required and Jocelyn has to work harder). Sometimes Jocelyn is up for the challenge and other times not, so its nice having two different options.

Prior to our riding sessions, together we have learned that "revving-up" Jocelyn's body has significantly improved her performance once on the horse. Jocelyn requires a lot of additional sensory input than other children which means foods need to have bold flavors, drinks need to be colder, bath water warmer, activities need to be rougher (but safely of course) and so on. For purposes of prepping her for hippotherapy, Peggy puts her on these platform vibrators that she uses to change/correct the gait of her horses. I'm trying to find a way to make something like this for her at the house so we can benefit from it everyday, but I haven't came up with anything yet. Jocelyn loves deep pressure and vibration, so this works wonderfully!

{Jocelyn sitting on the vibrating platforms with Peggy}

One of the wonderful things about hippotherapy is that it is the only therapy option that provides a three-dimensional movement for Jocelyn which simulates the pelvis movement in humans when we walk. What does this mean? This means that the natural movement of the horse stimulates and encourages Jocelyn's pelvis to move like we want and which she often does not get otherwise.

Peggy does an exceptional job at grading Jocelyn's body movement and attempts to only offer the least support required. Again, sometimes Jocelyn is strong and coordinated needing minimal assist, and other days Peggy has to prompt her more often and with a greater degree of correction to get Jocelyn's body to perform what we are wanting.

Jocelyn rides in all different types of positions as well in an attempt to gain different goals. For example, she rides traditionally with facing forward and sometimes with arms at her side, or backwards to assist her with coming up over her pelvis more, or lying on her back and even on her tummy which you see below.

There are many things I continue to learn about hippotherapy that I find very interesting. I believe there is no one therapy that is or will be a miracle cure for our little sweetness, but I also believe that by putting our feet into a variety of therapy will only help her in body and mind.

Sometimes its hard to take pictures because the flash can easily scare the horses. This week I took took some short video clips to share, but only going to attach one. I'm always so proud Jocelyn's efforts and blessed we've been given an avenue for this particular type of therapy.

Army Wives

Last night, my girlfriends/fellow Army Wives and I, went out to supper which is always so overdo. We went to Free State Brewery on Mass Street in Lawrence and the food, beer and most importantly, the company was exactly what we all needed!!

Here are all the sweet, beautiful women!

As many military wives around the world know, it's very difficult (yet extremely rewarding) to be a wife, a partner, to a spouse that is career military. I can't count how many times I've heard "I couldn't do that!" or "Why do you guys choose this life when you're by yourself so much?" That is one of the major hardships of military life --- being alone. BUT, the days and nights alone aren't permanent and missing our husbands reminds us that we are lucky to even have someone to miss, and that we aren't afraid to make the necessary sacrifices for true love and to provide for our families.

I couldn't be more proud of women like you see in this picture for they are what stands behind and helps support the soldier that does so much for our country. Being a military wife sometimes means "doing it all" but never forgetting that our husbands are making similar, yet different, sacrifices themselves.

Thank you so much ladies for being in my life and navigating this journey together. Just when we think things are getting back to "normal" (whatever that is right?), something changes, and I'm thankful we are all here to help each other along the way.

I laughed so much last night my cheeks hurt --- you can't buy that!