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!!

Outtakes

First and foremost,
          HAPPY VALENTINE'S DAY!!!

{She is the CUTEST little Valentine around! We're trying to spread some 'LOVE'!!}

I wish I could say this was my idea, but its not. I saw an older girl sporting this a few days ago and I thought "HOW CUTE!!!" When I looked at Jocie all I can see is LOVE! The love I have for her, the love she oozes ... she IS the definition of pure LOVE! And besides, she loves to have her belly tickled so why not get her to giggling while coloring on her?? haha

So Outtakes?

I wanted to share some of Jocie and I's outtakes from our GoMighty photo shoot that we had back in January. The lovely Megan Peters sent me a bunch of her outtakes last night, and I just can't resist sharing them ... I literally love all of them!! Seriously, I thought I was gonna cry seeing Jocelyn and I together. I don't really get to SEE how we interact ... so this is a really nice gift to me!! :)

I probably mentioned this before, but Megan really wanted to capture us doing our "normal everyday thing" and I think that's what she pretty much got! :)

Be prepared ... a million photos comin' atcha!
          A little train riding action --

          A little decision-making --

          A little book reading --

          A little swinging action --

          and some good ol' toy time --

I know I'll be definitely treasuring these! Some of our face expressions really made me giggle.

Hope you enjoyed them too!!! :)

Eight Years

HAPPIEST OF ANNIVERSARIES SWEET HUBBY!

Today marks EIGHT years of marriage for us!

EIGHT!!!

Its absolutely amazing where eight years takes you ... both as individuals and a couple!

We've experienced so many beautiful things together, created an incredible daughter and have had plenty of struggles along the way that we continuously conquer and overcome. We are both strong individuals and we can butt-heads like the best of them; but we have passion, appreciation and love for one another though it all.

We finished college (twice over for me), you became a Blackhawk pilot, we established careers (well, you were already farther along in that department), we've moved A LOT and done quite of bit of worldly traveling, you've deployed twice, we've bought 3 homes and 2 income properties, WE'VE HAD A DAUGHTER, made a million memories and I see so many more great and wonderful things in our future!

Even after eight years, I would choose you over and over again!

I was looking through pictures of our wedding week and so many made me smile and laugh -- thought I'd share!

{Our rehearsal attire!}

{He's so silly! Man we look like babies!!!}

And the ones that make me giggle the most!!!

{It literally looks like I'm trying to eat his face!
I've never seen this expression before or after this.
I love it because it makes me laugh so much!!! hahahaha}

{Such innocence here!}

{I just let him think he's got me roped-in ;) }

You make me smile a lot honey and just like yesterday, you are also there to wipe-away the tears and love on me. Thank you for being my husband ... my friend!

 

I love you more than you could possibility ever know!

Feel Like Death

... well, death a little warmed over!

Seriously, the last time I was sick was when Jocie was in the NICU and that was nearly 3 years ago!!! I suppose its my time ... my turn ... but I don't WANT IT ANYMORE!!!

         Four days of this crap is ENOUGH!

I can't stop drinking because I have an unquenchable thirst, which means a bazillion trips to the bathroom. Let’s face it, this whole getting up & down business is a total inconvenience. Oh, and of all times, 'aunt flow' decides to view now!! TMI?

Yesterday I had to go shopping and that took whatever I had left out of me. Have I complained enough? No? Okay, so I also used my free RedBox rental on a stupid, stupid movie called Hunger Games because a crazy amount of people read the books (which were probably equally as dumb) and yes, I know the movie was free, but I wanted it to be a GOOD movie damn it! Not to mention, that I also missed my favorite show The Walking Dead, I missed the season premiere people, for THAT movie!!!! What a waste!

After the movie was over, I thought the hubs and I would watch what was left of the Grammy's but nope, he was totally not interested. So what did we watch? The frickin' dog show!! Now don't get me wrong, it was kind of entertaining, but probably only because I was slightly delusional with adding commentary and various voices to go with each dog. Trust me, there was the jock, the valley girl, the prep, the humpty-dumpty 'duh' one ... the list was endless.

Maybe I'm still delusional? Seriously, this sickness is taking over my brain.

So anyways, since I'm doing a lot of venting, let me just continue with this afternoon. After I planned, prepared, packed, drove all the way into town, un-packed all our crap out of the van and hauled us into the YWCA to go swimming ... THE DAMN THERAPY POOL WAS CLOSED!

CLOSED!!!

No joke - I about lost it right there. I literally thought I was going to have a total meltdown right there in the middle of the lobby. I didn't want to go swimming, I didn't want to be there ... but I haven't done anything with, or for Jocie, in four days, and she deserved to do something fun and I'll be damned, that wasn't going to happen either. Quite literally I stomped my feet all the way back to the van, with all our crap, like a pissed off teenager. All the way home I was huffing and puffing. Once I got home I felt so silly that I let something so little set me off.

Guess you just have those days.

So, now that we've both ate lunch -- it nap time -- again!

I am DEMANDING for tomorrow to be better ... to feel healthy & better!

Waaah - What a Cry Baby!

Throat feels swollen, tight and miserable;
Glands feel like gigantic softballs;
Nose is both stuffy & snotty;
Waves of nausea (but not too bad);
The entire body is achy, fatigued & all around exhausted;
The mild, occasional headache has morphed into a perma-headache ...

All I want to do is SLEEP!

 

Yes, I will whine and cry if I want too damn it!!!

But I'm a MOM and every mother in the world knows that entertaining sickness is just not an option. And of course I would get sick after a busy week which begs for a fun weekend, and on the weekend that the hubby has drills (which means he has to work 12 days straight, long days, late hours and of course that means minimal time at home).

Does it sound like I'm complaining and totally having a pity-party?

          GOOD, because I am!

 

Oh, and add a side of guilt to that all that please! I feel guilty because (a) I'm doing the bare minimum for and with Boogs and (b) I'm going to feel AWFUL if I get her sick!

I'm trying so hard to keep my germs away from her, wash my hands like I have the plague and keep both of us on healthy diets which include citrus foods, vitamins, green tea and anything else her and I can handle.

No parent ever wants their kid sick or hurt - duh! But its so hard for me some days when Boogie is in pain or sick and she has no other way to let me know except to cry or whine. With being almost 3, any other kid would be able to tell you, or show you, where they hurt or feel sick because they are eating by mouth, moving around, talking, etc. Someday's I just feel like bitching and moaning because damn, if it were only that easy!!!

This morning, as Justin went to go get Jocie from her room while I felt half dead in the recliner with a blanket, heating pad, crackers and bottle of water -- we both looked at her and started talking about how beautiful she is in the mornings (all the time really). But as we looked at her perfectly curled hair with barrettes still holding back her bangs, her bright smooth skin free from dark circles and bags under the eyes, her cute little smiles and giggles that she has virtually every single morning, her forever non-existent morning breath ... we just beamed with joy. Even with feeling as crappy as I do ... looking and talking about Jocie ... made me feel better.

Now, if daddy and I could only look and feel so rejuvenated in the mornings!

Fat Chance!!!

As I'm sitting here, surprised I even have the energy to think (let alone type), I'm watching Paula Deen and wishing like hell that she'd make a house call -- just this once! She's making a homemade coconut hot chocolate drink (PERFECT for my sore throat) and it even has a roasted marshmallow on top (and my family KNOWS I'm a marshmallow phene)!!! And even though my throat feels swollen shut, I want a super big burger, fries and milkshake later today. Since that would require me leaving the house, that totally won't happen ... but I can still want it.

Instead, I'll keep eating my saltines (these crackers really do have magical powers), soup and drinking lots of water (I had over 130oz of water yesterday and STILL feel thirsty today). But in all seriousness, as long as Jocelyn and Justin stay healthy, that'll make me happy!

My Friend Laycee

I've never ...
          talked to her,
          hugged her,
          heard her laughter,
          spent the day with her,
          met her at all!

BUT ... I LOVE HER!

{She's absolutely BEAUTIFUL!}

I met Laycee's mother online while looking for something to help protect Jocelyn's Mic-Key button. Laycee's mother's name is Valerie and she is a pediatric RN who has been fostering/adopting children who are gastrostomy fed for many years. She currently has two children with g-buttons, one of which is Laycee, and her Belly Buttons are washable, reusable and almost make having a gastrostomy fun.

{My dear friend Valerie and her amazing kids}

Valerie is a remarkable woman ... REMARKABLE! She is a woman that I admire and respect. She endlessly loves, gives and treasures her children. She has lost children along the way and with their lost, she also lost pieces of her heart. She often refers to Laycee as her "heart" and indeed she is ...

 Laycee quickly becomes anyone's heart!

 

In Laycee's case, to know her, is to absolutely LOVE her!!!

 

Laycee is witty, sarcastic, honest, artistic, genuine and funny! Like I said, I've never actually met her, yet I know these things about her to be true.

 

Even at only 19 years-old, Laycee is a superstar with having her own webpage and business called Laycee Originals. Despite all of Laycee's health struggles, her mission is to make people happy ... to make the world smile!!!

{Laycee with some of her artwork}

Here is some information about Laycee:

 

"Laycee was born with a congenital diaphragmatic hernia (meaning her diaphragm did not form completely, allowing her organs, including her liver to move up into her chest). This particular defect occurs in approximately 1 out of every 2,500 births. Only 50% of infants born with CDH will survive to go home and, many of them will have health problems throughout their lives. Because of her CDH, Laycee's lungs did not develop and, in order to save her life, she was immediately placed on ECMO (a heart-lung bypass machine). She remained on ECMO for a total of 21 days. During that time her hernia was repaired and, unfortunately, she suffered a massive stroke destroying a large portion of the left side of her brain.

The prognosis for her neurological outcome was grim. One physician even went so far as to say, "She will just stare at the walls."

Laycee proved to be a fighter. She learned to walk and talk by the age of 3 and, with the help of a wonderful teacher, she learned to read. Her academic skills are limited; however, she has the confidence and the spirit of a lion.

Until approximately 2 years ago, Laycee could not write or draw. She performed most of her school work either on the computer or verbally. One day, she presented her Mom with a picture. It was a face....crude, but a face nonetheless. From that point on, her artistic endeavors took off. She began drawing everyone she knew and, with each portrait, her skills improved. At this time, Laycee has drawn over 800 portraits ~ all the same, yet different. She draws them according to specific information provided by the subject.

Her artwork is currently displayed in medical clinics throughout North Texas (including Wichita Falls, Grapevine, Fort Worth, and Dallas).

Please join us in celebrating this amazing person and her beautiful spirit. Although she has struggled with serious health issues since birth, she sees life through innocent eyes and with a pure soul." 

 

We even had the pleasure of Laycee drawing our precious Jocelyn.

{Honestly one of my most favorite pictures!}

Right now, Laycee is struggling with her dysautonomia, which is a dysfunction of the autonomic nervous system. In Laycee's case, her dysautonomia causes her at times to have a great deal of difficulty regulating her heart rate, her blood pressure, her glucose levels and her temperature. Certain things can exasperate her dysautonomia such as an illness or an infection which she is already more prone to contract than another child.

 

Yesterday morning, Laycee's heart rate was 20, she had no blood pressure and Valerie could not awaken her. Laycee's dysautonomia seems to be progressing/worsening as blood test and xrays proved no infection. After IV fluids and meds, her vital signs have somewhat improved and was sent home. She continues to require additional IV fluids, IV medications and close monitoring.

 

Valerie wrote yesterday that her "heart is being torn apart," and even with everything that my own family has went through and continues to endure, I hope to never feel the desperation, fear and pain that she is experiencing right this moment.

 

It was gut-wrenching to read how Laycee only spoke a few words yesterday which pertained to her desire to "not go to Heaven yet." NO mother should ever have to hear those words uttered from their child's mouth. Those thoughts ... that reality ... should be the furthest thing from a child's mind, but sadly in Laycee's world ... in Laycee's reality ... from what she's been exposed too ... its not!

 

My friend Valerie does understand the need to prevent her daughter from suffering and has said "if she says she is ready to stop, I will stop."

 

How do you "stop" as a mother?

How do you do that??

 

I'm writing today about Laycee, and her mother, because they have a very special place in my heart. I love them like they are family, and it absolutely breaks my heart to learn about Laycee's present condition and to read how my friends heart is "heavy" ... is "breaking" and that she worries about "what the darkness will bring."

 

I wish I could take all this away from Laycee and Valerie ... but no one can! Its not right, its not fair!!

 

Below you will find Valerie's request from yesterday.

This is my prayer, my wish, my desire for her and Laycee.

If you feel it in your heart to do so, please join us in this request...

 

          "If you wish to pray for her, meditate for her, speak with a higher power for her...that will be greatly appreciated. I do ask that you only wish for her to pull through and be the strong young woman she is. I am not ready for anyone to ask for "God's will." This child is my oxygen...without her, there is no me."

 

All my love to you Laycee & Valerie!

Weekend

We all really had a nice weekend! Which was ... well ... NICE!

Considering we've been doing traveling the last few weekends, and this coming weekend Justin will have drills (which means he'll be working 12 days in a row before a day off ... sucks!), I'm glad we got to spend time together and have a relaxing weekend together.

We ended up taking a trip to Lowe's to get the needed supplies to make Jocelyn a custom bed. Its not going to be anything fancy, but right now we have a twin mattress on the floor with a body pillow stuffed under the outer side of the mattress so she doesn't roll out.

At this point, anything will be "fancier" than that! HA!

Now that Boogie's getting heavier, its a lot more difficult to lower and lift her to/from the ground. Since we are in this for the long haul, I want to save our backs, and not to mention, make sleeping as safe as possible and more comfortable for her.

Justin got started right away with sawing, sanding and prepping the wood. He loves doing this type of stuff, so it was a nice for him to have something like this to do. We should have the bed completed some time this week!!

When we were at Lowe's I showed Jocelyn several different colors to see if she would have a favorite ... even pick one. The colors I offered where purple, yellow, orange, blue and pink. I offered her the colors two at a time and even presented them on different sides (sometimes she has a real preference for anything on her right side ... easier to touch, grab, etc), but continuously she picked the color pink.

And not just any pink ... THIS PINK! hahaha

We of course aren't finished by no means, but closing that gap. I'm hoping the finished product functions like anticipated!

We also spent time playing with each other and Jocie even showed off her crawling skills which totally made our day!! I posted the video on Facebook, and I'd post it here, but not sure how now that the blogger site has changed a little bit. :\

Sunday, we treated ourselves to lunch at a really awesome place called Boca's Cafe and it was probably the best meal I've had in MONTHS!

{Justin had the Affamato sandwich and it was sooo good with a zesty pepperoni taste and chunks of melted mozzarella cheese. I had a drunken salad with chunks of mozzarella and soaked artichokes and peppers. To round lunch out, we tried both their Kahlua tiramisu & pistachio gelato!! All of the foods were impeccable! Not the most wheelchair friendly place, and its a small cafe, but we hit the cafe at an excellent time & had plenty of room!}

Oh, and I almost forgot ... My 10lb weight loss treat???

I FINALLY upgraded from this ...

to THIS!

HUGE IMPROVEMENT!!!

 

My FIRST iPhone -- my first ANY cool phone in fact -- and I'm SOOOO EXCITED!! Well, sort of ... I'm a little technologically challenged sometimes. I'll get the hang of it soon though!!

 

I have so much more to say, but we've got a busy day and its time to get cracka-lackin!

On a Roll!!!

I am soooooo proud to announce that in less than 30 days (23 days exactly!) I am officially down 10lbs!

!!!!! TEN POUNDS !!!!!

 

What does 10lbs look like?

{The obvious!}

{We've all lifted these! Wow!!!}

{Yea, even a 10lb baby!! I know you can relate Vanessa!}

{Seriously so gross!}

Lots of us are visually driven and when I SEE what I've accomplished, and in such a short period of time, I'm even MORE proud of myself!

 

This means me lifting Jocie is more like only lifting 20lbs because I myself am carrying around less weight -- I like the sound, and feel, of that!!

 

My recent obsessions?

1. Drinking more water
***I use to drink a ton of water and that really stopped after having Jocie -- Just didn't think about it. I usually drink 100oz/day now. I tell ya though, I don't have the same cravings, I'm able to tell the difference between hungry and thirsty, and my waist-line is thanking me a heap!
 
2. Doing a different workout 5-6 times a week
***Doing something different all the time keeps me motivated, something to look forward too and my body guessing.
 
3. Eating CONSTANTLY! No joke, I eat about every 2-3hrs without fail.
***I love that by eating smaller, low calorie meals that I literally get to eat all day!!
 
4. MyFitnessPal
***Getting involved with this online support and community has changed EVERYTHING for me! I've always been one to workout but wasn't getting the results I wanted. By using this for the last 23 days, I've seen WHY I wasn't losing. I'm amazed by how easy it is to rack up those calories without even realizing it.

I never thought I would lose these 10lbs so fast!! I'm simply amazed and very proud of myself. My husband said this morning "Your awfully proud of yourself" and I am! Not in the proud, boastful way ... but in that "I can't believe I'm doing so well and finally DOING IT" way!!!

 

I told myself that I would reward myself with something for every 10lbs I lost {not like I can't do it whenever I wanted, but just as a "great job Angie" type of thing}, but just realizing that I'm doing so well is truly reward enough! :)

 

Happiest of Friday's guys!