Frustrated & Flattered

FRUSTRATED

I LOVE seeing our babygirl like THIS!

But the norm lately, has been THIS:

She does look pretty precious sleeping though!

But, I want, and NEED, Jocelyn to sleep more and sleep better at night.

She will be three on March 22nd ... THREE! So this whole waking at 2:30am, 3am or 4am business (the time always changes but its always way too early!) and then being so tired after breakfast that she can't even cry about being tired?

Its not working.

And I'm sick to death of it.

 

The days are too long and we have too much to accomplish without wasting away the day sleeping.

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

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

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

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

We are already giving her 5mg of Melatonin and even 1mL of Valium to help with any muscle spasms. I suppose soon I will again have to call the neurologist and inform them that we might have to try something else. I hate to add more meds because I just got her off several different kinds (ie prevacid, etc). Its like everytime I wean her off one, we add another one. And I say wean her because the medical field does a poor job of reevaluating medication usage ... they just add and add without thought to maybe "hmmm, she might not need this anymore."

So I guess I will do it!!!

 

I may be more stressed about the whole sleeping thing lately (besides the fact that the hubby's been gone, I need sleep and this has been going on for 3 years ... yea I know ... those are enough reasons), but we will be trying a new preschool in an actual school district here in a few weeks (more on this subject soon!!!) and there is NO WAY she will succeed if we can't even get sleep.

 

I know what many of you are thinking, "She will adjust" and "she will get on a schedule" and "she will get worn out and probably sleep better at night." Trust me, I've been trying to get her, and keep her, on a schedule from day one! Not to mention, we've tried the preschool thing outside the home for a month and she never adjusted.

 

We will just have to try, wait and see ... that's all you can do!

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

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

I felt like the richest mama in the world!

 

Now, about the two things:

 

- ONE -

Before we even got into the pool, we had to get dressed of course. Jocelyn and I have not been swimming much because we both were so sick. Now that we're better, it was time to get back to our pool therapy of 2x's/week.

 

I went to put my swimsuit on, and instantly I became THAT mom!!! You know, the kind of mom that other kids look at and go "Oh my god I'm so glad she's not MY mom!!!" My swimsuit had totally grown! Seriously, its a tankini and the top was so big and loose that at any moment when I moved a boob was going to fly out and say "HEY!!" Then, the swim bottoms looked like I took a poo in them. I looked in our bag and was relieved when I saw that I also had board shorts. Unfortuantely, when I pulled them on and cinched them up as tight as they would go (thinking that was going to be my saving grace!), nothing happened. Once I let go ... BAM! They just dropped to the floor!

Really? Was I THIS much of a chubby bunny??

 

We still went swimming because I promised Boogie, but it was an adventure to say the least.

- TWO -

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

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

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

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

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

Lots of true, feel-good moments yesterday!

Celebrity Doppleganger

I thought this was funny!

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

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

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

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

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

Did You Know...

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

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

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

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

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

 

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

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

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

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

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

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

CEREBRAL PALSY

- And it affects our WHOLE family! -

 



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

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

To help spread awareness, I thought I would provide examples of an ABI & TBI.

 

An Acquired Brain Injury (ABI), from traumatic and non traumatic causes, is a leading cause of disability worldwide.

Examples of an Acquired Brain Injury:

• Stroke
• Brain Tumor
• Encephalitis
• Hypoxia
• Brain Hemorrhage
• Traumatic Brain Injury

Examples of Traumatic Brain Injury (TBI):

• Falls
• Vehicle Accidents
• Assaults or being struck in the head
• Blasts (like what the military experience during war zones)

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

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

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

Some stats of those affected by Acquired Brain Injuries:

• Stroke: 795,000
• Tumor: 64,530
• Aneurysm: 27,000
• Encephalitis: 20,000
• Multiple Sclerosis: 10,400
• Anoxic/Hypoxic: number unknown

The direct medical costs in an ABI population are substantial in the first year post-injury and typically costs greater than $40,000.

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

Of the 1.7 million people who sustain a TBI each year in the United States alone (MILLION ... so our daughter is by far not the only one affected ... and 475,000 of these cases are in children) the following occurs:

• 52,000 DIE
• 275,000 are hospitalized and
• 1.365 million are treated and released from the ER
• 3.1 million will live with a life-long disability as a direct result of a TBI

The cost to treat the average TBI?

• Post acute care: $850-$2,500/day
• Average hospital-based acute rehab: $8,000/day
• Therapy/Treatment Programs (ie 4hrs of therapy ... we do this easily): $600-$1,000/day or week
• And we aren't even getting to any secondary surgeries like Jocelyn has had (ie eyes, gtube, soon-to-be hips, etc)
• CBC & Prevention estimate direct medical cost & indirect costs (ie loss productivity, etc): $76.3 billion ... BILLION ... each YEAR!

Living with a brain injury, caring for person with a a brain injury, is no joke!

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

What we can all do?

Learn and talk about it,

love and help each other,

be sensitive and encouraging,

do not judge,

to not discriminate

...

HELP when and wherever you can!

Way Too Much

Yes, that's right ... waaaaaaaaaaay too much has been going on lately. And I'm not talking about appointments or "need to be here or there" type things (although that is our typical norm), but I'm talking about just life in general.

This whole sickness thing?
          Stick a fork in me because I'm beyond done with it all! Thankfully, after 12-13 days, I am better. I honestly can't say that I've been sick like that before and I pray this will not become a yearly trend.

Jocie's sickness?
          I don't even know where to begin. Unless you have a child, or have cared for a child, that vomits at a drop of a hat, you just don't begin to understand how draining it can be. Within 4 hours yesterday, we had changed outfits 4 times. Did it stop there? NO! It merely continued.

We keep laundry detergent in business folks. 

 

Yes, Jocelyn has a feeding tubing, but if it won't stay down, it doesn't matter. The last few days, there have been countless times that I've literally had to infuse 10ml of water every 10 minutes for hours because that's all she could tolerate and that day we barely got 2 diapers. Sometimes even that didn't work. I know it sounds like I'm whining ... because I am. Do we have it so much worse than everyone else ... no ... but its scary with you have a child with poor muscle control who continuously vomits, can't clear the vomit, can't even cough effectively and is having lung issues, severe dehydration on the horizon and yet the doctors make you think your crazy because your being "overly concerned." I say this all the time ... I HAVE EVERY REASON TO BE!!! It drives me nuts, and it heartbreaking, that Jocie can't tell us or show us or point to what hurts or what is the problem. She can't tell us she's nausea or that "ok, I only can handle 4oz of food right now instead of my normal 8-10oz" so we just get to guess or she vomits and thats how we know. It just sucks some days!!!

This snowstorm business?
          I'll admit, the thunder snow was pretty cool -- for a hot second -- and then I was OVER IT!! We should have been prepared, but sadly, we were not. Now that we live in the country, we have a desperate need for a tracker with a blade, a snow blower ... simply ANYTHING that does not involve hours of shoveling. Luckily, Justin was home and did the majority of the snow removal last week, but what I did help with, was definitely not my idea of a good time. And the next day?

Neither of us could move.

That really helps when you have a child with physical needs.
I suppose it only further helped us to get stronger and gain more endurance.
No? Looking at the bright side!

 

Even though we shoveled the sidewalks and driveway (well, the majority of the driveway), we still had a lot to remove. To our surprise, an anonymous Good Samaritan came over to not only remove the remaining snow, but they also grated our entire driveway for us!!!

 

WHAT A BLESSING!

 

Whoever you were -- we GREATLY appreciate your love and kindness!
Another storm is settling in -- I might need my secret angel again.

 

SOME RANDOMNESS:

• I'm annoyed that I haven't lost any weight in a week -- don't bother -- I know that it's "okay," that "it's fine," that "you've lost a lot already and you've lost it fast" ... just sayin' its annoying not to see the scale move.
• Was told today that my jaw and face looked chiseled. Ha! Love it and I love you sissy! :)
• I'm enjoying making daily workout challenges for my sister and MyFitnessPal buddies. Some are much harder than they look on paper. Its fun (I'm a nerd...I know), I like doing something different and it keeps me motivated to try new things myself.
• I mentioned it above, but I.HATE.SNOW! It can stop already. Winter can TOTALLY be over in my opinion!!! Two big storms in 1 week - NOT COOL MOTHER NATURE! Someone PLEASE remind me why I still live in Kansas? Oh, that's right, because of my HUSBAND!
• All I want to do is go to the lake for a jog, to push Boogs in her trike, take a walk ... just breath some warm, refreshing air. I have a bit of cabin fever! :s
• It's only been a day and I miss my hubby. He drives me nuts ... a lot ... but I miss him bunches already!
• My hair is annoying me because it needs cut, but I don't feel like going in. I forgot how short hair doesn't take much to do, but requires more upkeep. Now starts the decision to grow it out, or carve out time and MAKE myself get it cut. Hmmmm ...haven't decided yet.
• Never thought I'd say this, but I MISS doing therapy and school stuff with Jocie. With me being sick and now her ... its been WEEKS ... and we've done nothing but watch TV. Honestly! I've started working out again, but just recently. I go back and forth feeling bad about all our "down time" but if we are merely meeting basic hydration needs, I can't see how doing anything else would ever happen or even matters. Just really frustrating.
• Jocie's bed is finished. I'll have to post pictures later. Its simple but functional and definitely pink.
• I got to see my sweet friend Sarah for a hot second today! That made me smile and her baby-bum loved me because I got to bring her a tasty treat today (I call her wee-developing one a "baby-bum" because he/she is just hanging around in her belly, takin' up space, taking whatever he/she can get ... don't get all serious ... I'm just teasing and totally not making fun of a REAL homeless person). 
• After this weekend, I am now in love with mojito's! Always thought they looked fancy and good, but never tried one until Saturday night. Figured why not? Hope they are always as good as the one I had -- MmmmmMMMMmmm YUM!
• We are suppose to have yet another brain MRI this Wednesday and then see the Neurosurgeon right after ... weather permitting of course.
• I FINALLY exchanged our curriculum tote today at Child Care Aware (I've had it nearly 2 months and you are only suppose to have them checked out for 2 weeks). I'm grateful that they haves these totes so I don't continually have to invent ideas for us to do. Felt bad I had it so long and glad they are so accommodating. They met me in the parking lot since I always have Jocie, there is no elevator and I can't carry Boogie AND totes at the same time. I mean, I know that I'm SuperWoman ... but I can't reveal that to the public.
• We are considering a different preschool at an actual school district ... Barryton school. They seem eager, kind and like they genuinely want to help. I will again know if this isn't the right path, but just because one place was not a good fit, doesn't mean no place is. Afterall, if everyone quit after one try, where would we be?? :) So, this means we have an IEP meeting next week. Eeekkk! Not getting too excited because Jocie won't even be able to start until the end of March, I will be there each day and we are only going for 2 days a week and maybe not even full days. This will allow for some of the staff to start to get know miss thang and for her to explore and experience something new as well.
• Lets see ... what else ... that is all!!! For now anyways! :) 

15 POUNDS!!!

Today marks 15 pounds of weight loss!

               FIFTEEN POUNDS!!!

I can't believe it!

Since January 10th until today, February 17th ...
          ... so a total of 37 days {or 39...depends on how you look at it},
                    ...  a little over 5 weeks,
                             ... I've lost 15lbs!

If you would've asked me if I could loss 15lbs in about 5 weeks, I would've told you probably not {I don't say never because well, you just never know! :P}

So, now that I've lost 15lbs ... what does 15lbs look like?

I've lost the following:

1. 15 Guinea Pigs
2. 10 dozen Krispy Kreme glazed donuts {mmmmmm donuts -- 120 donuts -- really?} or 10 dozen large eggs
3. Over 7 racks of baby back ribs {I'm one who'd take the ribs over donuts anyday!}
4. 5 average human brains or nearly 2 human heads
5. 3 Chihuahuas
6. Over 2 average human skins
7. 2 average newborns {seriously, this kind of makes me go geez fatty! haha}
8. More than the average house cat or a Bald Eagle

Crazy when you put the weight with an image huh? Some of these made me laugh haha

But seriously, I'm so excited with the weight loss but I have to be honest ... I can't really tell :s

In fact, I even asked the hubs last night, "Can you tell that I've lost 15lbs?" and he says "Well, I can tell you've lost some weight, but not that much." So sweet huh? I can always count on him to keep it real.

Then, this morning he says "Well, don't loose anymore because then you'll be skin and bones." Which is TOTALLY not the case folks. But which is it, can you "not tell" I'm losing, or am I losing "too much."

And men say WOMEN are confusing!!

Either way, I'm eating lots of food frequently but have cut most the crap. So I say, if I'm eating good, clean food and losing, then I have it to lose.

I haven't been able to workout for over a week with being wicked sick, so hoping this week I can get back into that -- always makes me feel good! We shall see what the end of the month brings. Until then, I'm relishing my success on this new way of life! :)

Early Morning Book Action

All through the night Boogs has been hacking a lung up -- or at least trying too. Come 2:30-3am I went into her room for the umpteenth time to suction her, make sure she hadn't gagged and puked like she's been doing, change her position, etc.

               Poor thing looked absolutely pitiful!!

I sprayed her nose then suctioned, sat her up, gave her another breathing treatment while pushing some Gatorade through her g-tube, and started reading her some old books that were nearby.

Sometimes I like going to an old book because it makes you remember why you love it so much. Even though we haven't read many of them in a long while, they totally had the Boogie approval. Before I knew it, she was laughing and giggling so hard she could hardly sit up, the breathing treatments were finished and she had received lots of Gatorade!

               I'd say that's how its done! :)

One of the books that we read, which is definitely a popular one, was "On the Night You Were Born" by Nancy Tillman.

This is such a great kids book with wonderful meaning. I remember this being one of the first books we had, or were given, for Jocelyn and the first time I read it ... I literally cried!! I swear I'm not a total crybaby these days, but certain things at certain times just strike that heart chord.

Don't worry - I didn't cry this morning.

But it did give me the warm fuzzies all over again!

 

For those of you that have never read the book, or can't remember what its about?

 

Here ya go:

 

On the night you were born,

the moon smiled with such wonder

that the stars peeked in to see you

and the night wind whispered,

"Life will never be the same."

 

Because there had never been anyone like you ...

EVER in the world.

 

So enchanted with you were the wind and the rain

that they whispered the sound of your wonderful name.

The sound of your name is a magical one.

Let's say it out loud before we go on.

 

It sailed through the farmland

high on the breeze ...

 

Over the ocean ...

 

And through the trees ...

 

Until everyone heard it

and everyone knew

of the ONE and ONLY EVER YOU!!

 

Not once had there been such eyes,

such a nose,

such silly, wiggly, wonderful toes.

In fact, I think I'll count to three

so you can wiggle your toes for me.

 

When the polar bears heard,

they danced until dawn.

 

From faraway places,

the geese flew home.

 

The moon stayed up until morning next day.

 

And none of the ladybugs flew away.

 

So whenever you doubt just how special you are

and you wonder who loves you, how much and how far,

listen for geese honking high in the sky.

(They're singing a song to remember you by.)

 

Or notice the bears alseep at the zoo.

(It's because they've been dancing all night for you!)

 

Or drift off to sleep to the sound of the wind.

(Listen closely ... it's whispering your name again!)

 

If the moon stays up until morning one day,

or a ladybug lands and decides to stay,

or a little bird sits at your window awhile,

it's because they're all hoping to see you smile ...

 

For never before in story or rhyme

(not even once upon at time)

has the world ever known you, my friend,

and it never will, not ever again ...

 

Heaven blew every trumpet

and played every horn

on the wonderful, marvelous

night you were born.

 

From the moment I read this book to Jocelyn back in our NICU days, I knew this book was about her. There will never be another Jocelyn ... ever! She is beautiful, pure and created just for us by God. She has brought us so many blessings and taught us so many lessons -- some of which have felt like more than we could bear at times -- but we were wrong. I often find myself doing anything and everything just hoping to see her smile ... hear those heartwarming giggles, and I know the Heavens & Earth rejoiced when Jocelyn was born ... and then again when she survived! I look at her and I've never seen such eyes ... such a nose ... such wiggly cute toes. Every parent thinks their child is special ...

... and in our case, without a doubt I KNOW IT!!!

 

For you are fearfully and wonderfully made (Psalms 139)

Valentine Surprises

Because of Jocelyn and I being so sick, many of the days have blurred together. Quite honestly, I didn't realize a whole week had already past. Luckily, I am slowly but surely starting to feel human again, and today, Jocie has kept down her fluids and her fever has been manageable. Big difference from yesterday and I'm most thankful she's improving and not worsening!!

The house has been in dire need of being sanitized from top to bottom, and I've been able to accomplish some of that so far today. Even got to try out our new Shark steam cleaner {which I'm IN LOVE with by the way} so I feel a bit accomplished!

You can really tell how much someone loves you by how they treat and take care of you when your so sick ... Thank you Justin for proving me right that you care deeply about Jocie and I!!!

We were surprised this week with some sweet Valentine gifts.

The first gift arrived on Valentine's Day and it didn't have a return address on the box, but I have a sneaking suspicion who sent this gift. I'm pretty sure the thoughtful, generous, creative and lovable person has the initials L.K. Why do I think that? Because I have a talent of remembering almost anyone's handwriting ... even if I haven't seen it in years!! The note that was attached was typed but the "Love Jocelyn" wasn't and I would recognized that "L" anywhere!! :) But I could be wrong, so whoever sent this gift, thank you SO MUCH from the bottom of my heart!! I totally made Justin and I both smile!

{I've never seen anything like this -- I think its beautiful!}

{You can see right through it}

{And the note with the gift -- isn't this the best??!!}

 The note reads:

          "This is a very special gift that you can never see. The reason it's so special is, it's just for you from me. Whenever you are happy or even feeling blue, you only have to hold this gift and know I think of you. You never can unwrap it, please leave the ribbon tied. Just hold the box close to your heart, it's filled with love inside."

We were so surprised and taken back by the gift because of course it was totally unexpected! In case you're wondering, yes ... I cried! This will be a gift we treasure always!!!

The next day Jocelyn got a gift from Grandma Garlow with all kinds of goodies inside!! We all three shared the container of chocolates ... Jocie tried the chocolate & we ate the insides haha It was a win-win for everyone! :)

{Also included in the package were these super cute monkey socks & cool looking crayons! I've never seen these types of crayons & can't wait to have Boogs try them}

Thank you grandma for all the goodies -- so very sweet of you!!!

And while I'm thinking about it, our sweet friends, Brian & Dani, went on a vacation not too long ago to Cabo {I know ... I was jealous too!! Doesn't that sound WONDERFUL right now? Especially with this snow and cold weather?? I was totally hating on them}. But while they were on their vacation, they made a beautifully unique bowl hand-painted by them, for us!

{The colors are so vibrant! The bowl is even made from wood!!}

I truly don't know how we got so lucky to have so many fantastic people in our lives. You guys make us feel so loved and special!!! We truly, truly are so rich in life because of all of you!!