Sleepless in Tecumseh

So maybe Jocelyn doesn't sleep because her bed is AWFUL!!! Oh my goodness gracious! I highly doubt this is the reason, but hot dang, my back and neck still hurt even this afternoon!

Justin crawled into bed with Boogie yesterday morning (and when I say "morning" I'm talking about her getting up at 3am is her typical time) so I could try and get an extra hour or two of sleep. Last night when she woke me up by hollering and pounding her feet on the floor at 4am, I figured it was my turned, and I crawled into bed with her so Justin could sleep a bit more.

Note: us crawling into her twin-sized bed is not ... I repeat NOT ... a normal thing for us, but at this point, we are getting desperate and will do anything for some sleep! :s

So from 4-5:30am Jocelyn whined and pushed against me because she wanted to roll around and off the bed onto the floor because "down there" she can be the loudest. I can not believe how hard she could push on me! Really kid? Trust me, I don't want to sleep next to you either! She finally got worn down and fell back asleep around 5:30-6am (which is when we should be getting up!).

Justin and I have tried nearly everything over the last two years to get Jocelyn to sleep through the night. We've went from changing the time we put her to bed, changing her beds, shorter naps, changing her meals times, warm baths, story time and cuddles prior to being put in bed, we use a noise maker, keep her room cool, keep stimulation before bed to a minimum and those are only the tip of the iceberg!

Oh, and don't think we cater to Jocelyn whenever she makes any type of ruckus because we don't. We've done the whole "let her cry it out ignoring her thing" and that hasn't worked for years now!

We will attempt a new tactic for a few weeks and when it doesn't work, we try something different. Up to this point I feel like we've been optimistic, but I am totally fed up with not having a decent nights sleep. All I'm asking for is about 5 hours of uninterrupted sleep ... that's it! I don't think that's being unreasonable?! I've definitely "put my time in" and now ready to have some normalcy (whatever that is??).

I have no problem getting up early. In fact, I love getting up at 5am to work out and get my day started bright and early, but not when I don't sleep but 3 hours or so at a time.

The time has now come when Justin and I are both so thoroughly exhausted that we are considering that maybe she might require a medication to help her stay asleep. For the most part she goes to sleep fairly well ... mostly ... but the sleeping past 4 hours virtually never happens.

So yesterday, I decided to call Jocelyn's primary physician and informed them that we have to do something. All three of us need sleep and if Jocelyn can't do anything most of the day because she's too tired, then how are we ever going to make gains in all the areas that she needs? I am starting to think its because of her brain injury?

Apparently my attempts were futile as the doctor's reply was "well it looks like she has you wrapped around her finger ... I have no recommendations but to keep trying."

WHAT?!?!

I don't think he is understanding the gravity of the situation here!

 

In the beginning I could do no sleep, and when you have a baby, you should expect that. But now that we are almost going on Jocelyn being 3 years-old, somethings gotta give!

 

Right now we still have connections with the special care unit at Children's Mercy and perhaps they will have some suggestions on what we can give Jocelyn in regards to medication. I know several people try melatonin with their kids but with all of Boogies health issues and so forth, I don't want to just take a stab in the dark and go off trying whatever. Normally I would, but if I made things worse or God forbid if something else happened in our already chaotic world, I would feel terrible.

So here the hubby and I remain ... sleepless in Tecumseh ... and growing more and more tired as the day/nights pass. I will keep hoping that we will find something, whether its a medication or some miraculous non-pharmacological approach that will help us all to get the much needed sleep we need.

Until then, we will continue to sneak-in naps whenever possible.

Perhaps this is just the passage of parenthood and everyone goes this long without sleep? If this is the case, then all you parents that have kids that are grown and gone ... God Bless You!!

For the rest of us that are in the midst of downing ungodly amounts of caffeine, covering our blackened raccoon eyes, have extra weight on our bones and constantly fighting our uncontrollable urge to take our irritability out on whoever is in our presence ... just know this mama is right there with you!!!  We all will survive ... right??!!??

Hair Party

Since I had already got my workout done early this morning and daddy was home during nap-time, I took advantage of having a little bit of "me" time to actually do my hair and makeup for once. Seems like I never "primp" anymore so it was nice.

I snapped a quick pic with my camera phone.

I can't believe how long my hair has gotten because it takes SO LONG for it grow!

Apparently Boogie was loving my straightened long hair, so tonight was a "let's play with mamas hair" night! Boogie hasn't ever played with my hair like she did tonight and she found it both funny, weird and maybe a little awkward. She would giggle, scrunch her face almost like she was disgusted and then all of sudden was intrigued when she reached the end and it fell from her hands.

I must've laid in-between her legs and let her comb her fingers through my hair for half an hour. I loved watching her facial expressions and getting to gaze into her beautiful brown eyes. Its moments like tonight that I wish I could freeze in time and store away somewhere deep in my brain so I'll never forget and a disease like Alzheimer's will never rob from me!!

I couldn't believe she was combing ... with her fingers ... through my hair!!!

COMBING PEOPLE! That takes dexterity! 

I didn't even know she could do that with her fingers because coordination is difficult for her and often times her fingers can be sort of stiff. What's even better? She was doing it with her left hand! Whoa-wowzers!!! :)

She's so cute!

I think she's really starting to look like a little girl.

*sniff* *sniff* -- She's definitely no longer a baby!

Daddy decided after mommy's hair was thoroughly tangled and Boogie's slobbery fingers and hands had been wiped all over my face a hundred times, that a family picture was a good idea.

Still turned out cute and something to treasure!

Christmas in November

For more mornings than I can count, Jocelyn seems to think that getting up at 3am is the most appropriate time for starting her day, and here is one of her favorite early morning activities...

{"Hmmm, I've got two somethings to brush my hair - that's important.
Can't forget the smell good spray for my curls and oh ...
DON'T FORGET THE LOTION MOM!" She's so funny!}

So even though I'm constantly in a zombie, sleep-deprived state ... I just can't seem to be too terribly upset at this face!

Why do I feel like it's Christmas in November? Because our insurance (with a little additional encouragement from our primary physician and yours truly) approved some much needed equipment to help Boogie gain strength, endurance and hopefully independence.

 

I mentioned earlier in one of my blogs that we got some awesome equipment this last Tuesday, but wanted to snap some quick shots of Jocie in it.

 

What we ended up getting was a KidWalker (this is a gait trainer) and a Bantam Sit-to-Stand which both are crazy amazing!! We had to wait 1 1/2 months to get our "presents," but in the world of special needs equipment? That's pretty dang good so no complaints here!

 

We have been trying out a bigger sized KidWalker which we will be returning of course, and its so nice to have one in Jocelyn's size with all the bells and whistles. She really needs that extra support at her chest, abdomen and pelvis.

 

Here she is in her new walker.

When looking at the KidWalker from the side, it looks much more complicated than a traditional gait trainer, but this thing is probably the easiest maneuverable gait trainer we've seen and tried out.

 

Here's what the gait trainer looks like from the side.

{I love that the little clear wheels in the back light-up with all different colors when rolling}

In order for Jocelyn to learn to tolerate bearing her own weight, and to strengthen her bones (because we all need to bear-weight for good bone density), we needed a stander. The one we had been using prior to our new one, was a wooden TherAdapter vertical stander. It was perfect when Boogie was small because its hard to find a stander that comes in itty-bitty size!

Now that Jocie is taller and heavier, this Bantam Sit-to-Stand is perfect!! It does exactly what the name says, you sit your child into the device, secure them and then use the lever to raise them into a standing, vertical position. When you are ready to get out, you pull back on the lever and the hydraulics slowly lower the child back into sitting! Pretty nifty huh?

I love this concept because it makes a person go through the entire motion of getting from a sitting to standing positioning which is needed for brain mapping/learning. We also opted to get the swing away tray and knee pads to make things easier with getting Jocelyn in and out of the stander.

Here's a side view of Boogie sitting and then partially raised.

And here she is raised all the way up without the tray.

One of the things I love most is that this stander is user friendly so anyone can use it. And as you can see, we had to build up the foot plates because she wasn't tall enough. No matter, she will have plenty of time to grow into it which means more usage time for us! :)

Today we painted, sang songs and read in our stander -- she seemed to enjoy it!! Woohoo!!

These two pieces equipment were extremely expensive and I don't take having insurance for granted. I hate that Justin works all the time, is gone a lot and often worry about him when he's flying; but, without his job, we wouldn't be able to achieve our goals and be granted such incredible "Christmas" gifts!

Friends Change Everything

Its been no surprised that I have been tired today ... no surprise at all.

What was a surprise today though, was a visit from some fabulous (and I mean FABULOUS) gals!

This afternoon Jocie and I went for a trike ride out at the lake because we were in serious need of some rejuvenating sun rays! Along the way I came inches from almost hitting a deer and it was only like 11am! I guess deer don't realize that 11am is totally not an appropriate time for launching themselves in front of me. Then again, there is never a "good" time to almost hit a deer! I totally had to choke my heart back down into my chest. I've fallen in love with our van and I now don't know what I would ever do without it! My friend Brian said according to the deer "a near car experience is nature's best laxative!" Ha! He's always making me laugh with his quick wit.

So anyways, once we got home, we started doing some of our preschool stuff which neither of us wanted to do. I'm ready for some energy to be zapped into our body's. About half-way through our stuff I hear a knock on the front door. I immediately thought "Oh no! My door is open and someones totally going to know I'm home ... I have to answer it now ... Gawd! No one comes to my house unexpectedly ... I live in the country ... this will be just grand!!"

Aren't I just the positive one today? Shame on me for being such a turd! I was letting my crankiness get the best of me and I don't like it when I get this way ... not one bit!!

To my lovely surprise, it was my girlfriend Sarah!! Seeing her smiling face standing there at my door with a warm Chai drink in one hand and a 6-pack of superbly decorated mini Billy Vanilly cupcakes in the other hand, was the most beautiful sight I've seen in days!!!

Even though she is one of the busiest women I know, she took time out today (probably missing her own lunch) to swing by and see us. I probably kept her entirely too long, but it was so nice getting to chat for a little bit face-to-face with a girlfriend. Visiting with her this afternoon made me realize a few things that I hadn't really took the time to think through yet. Funny how sometimes your brain, or heart, throws-up when you least expect. Needless to say, I think she was suppose to come over today and I'm so glad she did.

After a later lunch, I snuggled Jocelyn a bit to get her good and sleepy, then laid her down for a much needed nap. I also laid down but wasn't quite as successful. I did end up getting about 45 minutes of rest in, so that was something. Before I fell asleep I was praying to the "Gods of Crankiness" that we would both wake up in better moods!

And we did!

Not only did I feel a little better, but more of my girlfriends came by to bring us supper, dessert and even breakfast for tomorrow! I felt guilty because they had to drive like 20 minutes both ways just to bring it to us, but I know they love us.

The icing on the cake was getting to see our boys and mini princess -- I love their sweet kids. I know everyone has pretty awesome kids, but my girlfriends' kids always have so much love and giggles for us and they are such a treat to be around. They kept them in the car because they said they didn't want me to have to "entertain" them, so I just went outside and riled them up anyways! haha Chasing Ty around the yard was good fun for this lady.

I just recently found out that Grady's been praying for Jocelyn most nights and if that isn't heart-melting, then I don't know what is!! Ashley and Cherry, you girls are always so supportive and loving -- what did I ever do without you?? I love you both so dearly! Like I said a little bit ago, there is just something about great comfort in someone else's food ... I've always heard its because its made with love. You really made a difference in our night and seeing you two, and the kids, was uplifting in itself.

I've realized a few things today from my two visits:

1) I have AMAZING friends!

2) I'm truly fearful that we're going to loose Jocelyn ... I've felt this way for some time now ... and with the latest events, its all came to a head.

3) That a "cake intervention" really can cure a lot! :)

4) That sometimes I'm too hard on myself as a mother, and that I'm doing a pretty good job even on my worse day.

5) That simply seeing a bright beautiful smile on the face of a friend can make your whole day turn around.

6) That its okay to always want more for Jocelyn and for her to achieve as much as possible because that is what parents want. What I want most, is for Jocelyn to be HAPPY, and I think right now she truly is minus feeling a little achy and sick. I have never bothered to look up what a child with Jocelyn's diagnoses typically achieves (guess I've never wanted to know because I didn't want to plant the seed in my brain that "this is just the way things are" and give myself permission to not expect greatness), but I recently had a therapist inform me that the majority of people with Jocelyn's diagnoses rarely show any interest in anything, can't hold their head up, can't sit up on their own, manipulate anything, they do not roll and so forth. Hearing this from a trusted friend made me immeasurably grateful that Boogie can do those things, and yet, its still okay for me to want more for her.

7) And lastly, that a meal cooked for you oddly enough has healing magical powers!

I love you girls - so much! Thank you for making this Friday, much better than the last. You have the most giving hearts and I adore you all the more for that.

Just Like in the "Green Mile"

Do you remember that movie?

The Green Mile

... from 1999? (Yes, its been that long ago!)

The one with Tom Hanks and the late Michael Duncan? Who doesn't know that movie? On a side note, I'm still really sad that Michael Duncan passed away back in September of this year. I absolutely loved him in The Green Mile, Armageddon, The Whole Nine Yards and the infamous Talladega Nights!

When flipping through the channels just now, I came across The Green Mile on AMC, and the movie was just at the point where John Coffey went to visit Melinda Moores to heal her of the degenerating brain tumor that was soon to be the cause of her demise.

(I told you I loved his movies)

But as I was watching this scene, something totally unexpected came over me. I started to instantly cry as I thought of Jocelyn and all the brain damage she has sustained in her short few years. I actually was thinking "Why can't something like this be real ... be true ... and happen for us?" I might have simultaneously been having a nervous breakdown? (This is however also the most appropriate time of the month for me to be extremely hormonal :|)

I would do anything ... ANYTHING ... for my own "John Coffey" to come along and heal my precious babygirl. If there was such a person that could suck that permanent brain damage from her small, little body and then cough it out into the never ending abyss ... I would pay any price! My own life in fact!

If I had that kind of magical power I would've made sure it was done the second we knew about her brain bleeds.

Cerebral palsy is not a condition that can be "healed" ... only the after-effects can be treated. I use the word "treated" loosely at times because it often feels like your chasing your own tail or seeing how "good" you are at preventing or "catching things" before they get worse.

We all want our miracle don't we?

Tonight, more than anything I have ever desired with my whole being, I wish my sweet daughter could be "healed."

Covering Wounds with Blessings

Boogie was mostly wiped yesterday. She spent the majority of the day sleeping and being the sweetest cuddle-bug which daddy thoroughly enjoyed. Out of the two of us, he doesn't get enough cuddle-time.

We found ourselves enjoying every part of her -- right down to her kissable little lips and warm chubby fingers (she even has dimples on her knuckles).

Now that we've had a day or two to decompress, the blessings that have been placed in front of us are more than we ever saw coming!

Not only do we have our smiling, happy little girl back (she's slowly getting there, but this is a fantastic start!) ...

... but we have been flooded ... FLOODED ... with emails, texts, Facebook messages and phone calls from our family and friends that are filled with so much love, sincere prayers and words of encouragement and wisdom.

... its overwhelming!!!

I even had a friend (newly adopted "mom") that I met online through blogging, and she wrote so genuinely about Jocelyn and our family which can been seen HERE. Of course that made me cry as it was totally unexpected. You just don't realize how you can impact a total stranger (which she is no longer a stranger of course). But life is all about people and relationships ... that is what makes a person RICH ... and you guessed it, all of you have made me feel like we are the richest family in the world!

While we were still at Children's Mercy, I called Massage Envy and scheduled a massage for Monday for the hubby and I (separately of course so one of us would still be with Jocie). So yesterday we indulged in our much needed massages (we are actually sore today from them though), but they really did help relieve some of the stress and were worth the money (dang they are expensive :s)!

Also, our friends Brian and Dani came over last night bearing a yummy dinner, smiles, friendship, love and the most creative gift. My friend Dani has a gift for craftiness and she made me/us "The God Box." Hope they don't mind me sharing this, but I thought it was pretty thoughtful and it will be put to use effect immediately!! So what is this you ask? Well see below! :)

As if these things aren't enough, we traveled to Salina today to pick up what I thought was only going to be Jocelyn's new DAFO's (her last ones didn't work out too well so I've been anticipating the new ones). Once we arrived there, we found out that not only did her DAFO's arrive, but so did her KidWalk walker and her Bantam Sit-to-Stand!!! Can we say MERRY CHRISTMAS!!! I will have to take pictures of her in the new equipment and hopefully they will help make her stronger.

I so badly wanted to stop and see our friends Ashley, the girls at KDOA, our old neighbors and many others; but we sadly didn't have the time or energy. We ended up spending nearly four hours with our therapist fitting Boogies boots, putting together the equipment and adjusting it to fit her body. After all that, we were ready to come home!

Then, when Jocelyn and I pull up to the house, there was a Dillions delivery van sitting in our driveway. I pulled up, got out of our van and start talking to the delivery man. He was the nicest old man ... you know, that sweet-type of grandpa looking man? When I got out of the van I asked him, "Have you been waiting here long?" He replied, "Oh, for about 30 minutes or so, but I kept thinking somebody really needed these today." Talk about making you cry, and especially when you find out he had been sitting in the driveway for so long!!! He ended up delivering the most beautiful flowers and teddybear for Miss Jocelyn from our friends Dan and Kristi. It's no surprise that I cried, I'm such a ball-baby these days and especially lately, but I guess it just doesn't take much right now I suppose. Boogie immediately loved the teddybear and decided it needed a slobbery ear, and the flowers smell amazing! Lillies are even my (and by adoption Jocelyn's) favorite flower! :)

Why am I sharing all this goodness ... these blessings?

Not because I want to brag -- trust me -- I'm just not that kind of person. I figure there are far, far too many negative things in this world, and we seem to run into so many ugly-hearted people, that I wanted to take a minute to share how all of you have helped cover our most recent wounds with the best type of "band-aid" there is -- LOVE!

I can tell that we are already starting to heal, and amazingly fast I might add, but I think that is because all of you have swooped in like our knight-and-shining-armor to ward off the decent of depression, despair and fear. I know we still have fear and that not ever go away completely, and we will never be able to forget what we've experienced, but it will not define our family. We have God and you to thank for holding our hand along this journey!

Aren't Things Suppose to be BETTER?

I am having a really hard time being home right now!

Half way on the drive home yesterday from Children's Mercy (in the pouring-I-can't-see-a-thing-rain), it dawned on me that I was about to be right back in the place where Jocelyn had her first of the three seizures ... our living room floor ... were we spend the majority of our time.

As we passed two nasty wrecks along the way with Justin talking about I don't know what, because I couldn't seem to focus, and as Jocelyn was giggling on and off while watching Sesame Street in the back of the van ... I seemed kind of lost in my own thoughts. As I gazed out the window I could feel the anxiety creeping in and my heart progressively started to pound harder and harder. I told myself "It's not going to be a big deal ... don't worry about it" and then the thoughts of "Watch yourself just totally flip out when you get home!" came right afterwards. Sometimes your brain can make you feel like you might be going borderline crazy.

Maybe a little PTSD? Who knows ...

Last night was suppose to be an early night to bed and a morning of sleeping-in but neither happened. I had a hard time falling asleep and then staying asleep because I kept thinking about Jocelyn sleeping alone in her room and there being a chance she could have a seizure and I wouldn't know about it. When she had all three of her seizures, she didn't make not even one little noise, nothing, zilch ... silence! What if she was having one in the middle of night and stopped breathing again and it went on forever? I know it wouldn't go on "forever" but that is what your mind tells you.

As I would lay in bed, or the million times I went into her room last night, I would remind myself that she had the seizures because of the shunt failure. No one really knows that for sure though, and now that she's had them again, she will be even more susceptible. Maybe I'll have a little bit more piece of mind once we get an EEG?

Probably not.

Perhaps I'm having a harder time with this unexpected surprise of events because in the past I am the one that caught her shunt failures before they were "really bad" and even though the last two failures were a surprise, I wasn't totally caught off guard. Not to mention the last shunt failures happened more than two years ago so I'm sure I've started to let my guard down, but who can always live with such hypervigilance?

And not only that, but having your child be on their 4th VP shunt in only 2 1/2 years makes you wonder how many more times she, and we, can go through this? If we keep these types of statistics up, she'll have had 16 shunts by the time she's 10!!!

Maybe it's the fact that the other shunt failures, although terrible and stressful in their own right, weren't as traumatic for me as this one was. With the other failures, I didn't have to watch our daughter's tiny body convulse uncontrollably! I'm even finding myself feeling anxious everytime I feed her since it started during her feeding followed by vomiting.

I know I'm a strong person and "this too shall pass."

Have I ever told you how much I HATE CLICHE SAYINGS! Especially ones like "Everything happens for a reason" or "If God brought you to it, He will see you through it" or "What doesn't kill you makes you stronger." Spare me all those annoying cliches that people think will make you feel better but in fact only infuriate you. I know that sometimes people say things like this because it's hard to know what to say in situations like these ... just venting.

But I do know that all of this really will "pass," and that it is normal to feel "on edge" or scared that this nightmare will happen again. It may very well happen again ... these are the cards we've been dealt ... but in this moment, things don't feel any easier. I think that now that I've experienced this horrid world of seizures, I will be more prepared for when and if it happens again.

My heart is hurting which again is unexpected because I've got my smiling, happy girl right next to me. I guess fear is paralyzing me today with thoughts of "you could lose her at anytime" which is trying to rob me of my joy. The Devil can be stronger than we think, but I refuse to let him destroy me ... or us!

He.Will.Not.Win!