Ok first – watch.  turn the volume WAYYYYYYYY up. But not if you are at work or in any kind of environment where you need to stay quiet.

Now i’ll explain.

So – last nite, this crazy drunken bee meanders into our car via the sunroof. I try to swat it out – but its little crack-is-whack super sticky legs are like embedded into the felt and i’m not about to piss it off.

{Semi-random side story that has some bearing on why i am reluctant to beat said drunken honeybee out of my car: LAST WEEK on the way to dance, the worlds LARGEST YELLOWJACKET TRACKER JACKER FLYING BEAST OF CHAOS flies into the driver’s side window, and attaches itself to my ARM. Ok so i had a sweater on, but I could hear it VIBRATING when it rubbed its 8 inch long wings together. If you know me at all – you know I have an ungodly fear of flying things, things with wings, and things with wings that sting you.Also of deer, but that’s another story. Anyways – I was in the middle of a fricking forest preserve road (nowhere to stop for like 2 straight miles) so I get to the next stoplight and i’m all freaking out flinging my sweater around my head like a messed up Chinese fire-drill while some JA behind me is honking at me to pull up so he can turn and i’m like “it’s not MY responsibility to create a turn lane for your lazy {bottom} and i’m about to die of a bee sting!!!!!” And then the light turned green and i think the big thing flew away. At any rate, it stopped the earth shattering buzzing noise.}

Back to the present story – i was hesitant to piss this big bee off too much because I was not interested in getting stung. I also figured it would make it’s way out of the still open moon roof once the high wore off.

No dice.

I told the girls when we got home that the poor bee was probably dying and it was best to just  let it die in peace and we’d leave the windows open in the car and it would either die or fly out in the middle of the nite. So when Kealey reported that the bee was dead, I took her word for it. I had JUST opened the visor to make SURE it was dead when Kealey said “Karissa told me it was dead….” And the bee starts vigorously buzzing and crawling. This spawned a verbose reaction from my three oldest offspring in the backseat – and THAT is what i was trying to videotape – their whiney distrust of the inherent goodness of the bee and my ability to protect them from it’s stings. In the video you hear kealey going “but mommmmmmyyyyy – it’s not funnyyyyy!!!!”, as if I thought this was all a super fun joke. Which, it WAS funny – but not anything i was purposefully joking about.

Towards the end of the video, kaylen starts the screamfest, and karissa, kealey, and finally myself join in.

I was crying laughing watching the replay…. Like how I go from super cavalier videotaper to petrified “blair witch” participant?

So – that was one of the highlights of the day.

We also had Karissa’s neuropsych evaluation today. I get that neuropsych is a “new field” and relatively still trying to find it’s way in the navigation of the learning disability spectrum. Today’s appointment was basically just to go over some of the issues Karissa has been having academically, and see if there was concern of a learning disability, or if we just needed to tweak certain things about her learning style. She was referred to this doctor by the neurologist she saw after the MRI back in February (January? whenever – it’s been kind of a blur of the last few months!) Going in to this appointment, I had a lot of trepidation. I am not a huge fan of what I feel is the over-diagnosis of ADD/ADHD type issues, and i am CERTAINLY not a fan of medicating kids for behavioral issues that MAY have a basis solely in needing more parental involvement/follow-through/consistency. (Please hear that i am not saying every child with ADHD doesn’t need medication – I know a lot of kids who DO need it and for whom functional life would not happen without those meds. I just feel like our society in general has started to rely on meds to do our parenting for us. /rant. Off soapbox.) Anyways – I went to the appointment hoping he might have some good help for what is certainly frustrating in trying to get Karissa to get a wiggle on/keep up with her class/stay awake most days, but not really hoping for much.

And while i’m not really finished “processing” a lot of what he said, I can say that he thinks there is a problem, and that we can fix it. Or at least, we can hope to improve things for her enough that a lot of the other issues are brought under better control. We won’t really know more about what that plan is until a few other pieces of the puzzle are put together, including:

– the actual neuropsych testing. Kind of like ISAT tests that you take in school – but 6 hours worth. SIX. HOURS. The ONLY thing i’ve ever seen karissa do for six hours is dance. And sleep. I hope they are fun tests! They will be split up over a few days at least. But we are waiting for insurance approval for this part. (they approved 4 hours, but the dr thinks that won’t be quite enough.)

- Updated vision testing. Karissa has been becoming SUPER dependent on her glasses for everything (even though originally they were only supposed to help with reading the whiteboard at school, distance type things), and sometimes even saying that she still can’t see even with her glasses on. He was concerned about the rather drastic decline her eyesight has taken and wants the neurologist to go back over her MRI with a fine-toothed comb to make sure we didn’t miss anything.

- Updated Hearing tests – possibly an ABR. As part of what he feels her diagnosis is, he is concerned with “auditory processing” – but given her almost complete deafness the first couple years of her life with the repeated booth test failures and the recurrent ear infections and the speech delays – he wants to make sure there isn’t a “functional” issue on top of the processing.

– Pending a conference call with the ped and the neuro, he is thinking she needs a 24 hour ambulatory EEG to make sure she isn’t having seizures. I don’t think she is in any way – i call them zone outs or “brownouts” – but with this diagnosis, according to him, there is reduced blood flow to part of the brain (oversimplified explanation – she isn’t having brain cell necrosis or anything – it just doesn’t flow “good”, causes less neurons to fire, or more firing, or something – my eyes had glazed over by this point and i myself was in a “brownout”!) – but because of this, he wants to make sure she isn’t exhibiting ANY sign of it being electrical in nature. And when i say brownout – you ever have your computer just stop computing, and the little spinny wheel just spins and spins but nothing is happening in the background? It’s kind of like your computer has to catch up with everything you’ve just told it to do – THAT is what karissa does. She’ll be talking talking talking – every.single.thought.that.crosses.her.mind. – and then stop…..We all do it sometimes. She’s just been doing it a lot more lately. And even though she says she “likes to make her lip twitch” when it’s happening, i think it is probably a smart idea to get it checked out. Pain in the tookus for sure, along with everything else.

BUT – at the end of the day, if this helps us all understand and help support her a little better, it will be worth it.

This does not mean that we think she needs an “IEP” right now. We don’t know WHAT it means or what she will need. But we know it’s more than what she gets right now, so that’s what we are trying to figure out.  Once we have more information to work with, i’ll definitely put more info here. For now, we are working on ways to help her learn to be more indepently functional. She relies a lot on ME to get her cues for “what’s next”, and in my absence, she is heavily relying on Kealey. This is not fair to either of them – so we will start with some simple tasks for her/boardmaker type stuff to get her to understand her own schedule.

It is definitely a lot to process, try to sort through, try to wrap my mommy’s heart around. To me, she’s just Karissa: flighty, forgetful, chatterboxy-in-a-makes-no-logical-sense kind of way, beautiful princess dancer baby boogerton. I’ll never pigeonhole her or put her in a box. Try to understand what makes her tick a little better so i can watch her wings grow? You betcha. But never, ever, ever “labelled”.

But enough whining about this – we got surgery for the little one that requires an early morning drive. Which reminds me i have nowhere for the big girls to go yet – their bus doesn’t come til 8:30 and we need to leave by 7….dangit. Ok i’ll work on that! If you are the praying kind – please pray for little missy around noon-ish. Like I said last week – this is a pretty “simple” surgery, but still. I hate sitting in the waiting room by myself. I can’t distract myself good enough. So maybe leave me a comment here with a joke or a mind bender or something so i can read them tomorrow and not worry. I’m sure it’s not worry-worthy. It just never gets easier, handing your baby off to a bunch of men and women in OR scrubs, hoping the one they bring you back is a slightly improved version of the one you handed over, and that she wakes up in a normal way, not the drug-induced psycho-terror version of a Stephen King novel character.

So i’ll see you on the flipside party people.

Interesting side note – I was psychoanalyzed by the psychologist today. He noticed that I giggled a lot. Said that it was a coping mechanism for a chaotic life. I said “you’re either laughin’ or you’re cryin’”. He looked at me and said I was doing spectacular. I almost started crying. So I giggled again.

Hope you laugh watching the video above.

love and light~

(that’s for you PDL girlies!)

Terra

Let’s start with the easy ones first:

Kealey – doing fine and great – as usual! Really making huge strides in dance and school – when did she grow up so much? No worries on this one, thank God, because I don’t know what i’d do without her quiet calming strength.

Kaylen – also doing great! She’s been complaining of tummy pain more and more often these last few weeks, and even requesting enema’s at a few different times as they are the only thing to help relieve the pain and pressure (I know, strange, right?) – so she will have an appointment with the constipation clinic team up in milwaukee in a few weeks. We give her a lot of miralax and ex-lax already to try to keep things moving along, but hopefully they will have a little more insight for us about how to help her feel better. Preschool will be done in a few weeks and she is SO EXCITED for her birthday (in July – some of you may or may not have received your verbal invite to her pool party already? For the record, we have a blow up pool that is not even put up yet, but whatevs) and then to start Kindergarten next August.

Karissa – *deep breath* – she’s karissa, what can i say? Had a “tie up the loose ends” appointment with her pediatrician last week due to her taking a leave of absence this summer, and the school breathing down my neck to get a letter to address some school concerns. Apparently when we saw the neurologist in February as part of the MRI followup for the tethered cord concern, he wrote this thing called a “summary letter” (note my heavy sarcasm here). Well the letter never made it to us – and everyone else assumed the other doc had spoken with us. Long story short, we are being highly encouraged to run the mito testing on karissa sooner than later, followup with a neuropsychologist for academic testing (to see if she has an actual learning disability or something along the lines of ADD/ADHD something like that), and we are supposed to followup with a neurosurgeon regarding the tumor that was found on her spine on the MRI. While I am glad that all of these things are taking place so that we can know for sure what is going on on all fronts, it was a lot to process last week. Dr. Natalie also ordered an abdominal x-ray for Karissa due to some “incontinence” issues picking up in frequency and intensity. Sure enough Karissa is full of sh poop and we have to start a “cleanout” on her. (Remember that old Saturday Nite Live skit called “super colon blow”? Yeah, that.) This should be all kinds of fun for everyone involved. I’m really looking forward to it, as is she I’m sure.  We did get the note for school (she is having a hypoglycemic type crash after lunch every day so she has to start having a protein based snack in between recess and their regular snack time).

What all the rest of it will mean I have no idea. The neuropsych testing should help point us in a direction as far as her school issues go (she will likely need to have an IEP put into place next year due to some struggles she is having academically) – but we will wait to see how that appointment goes before we do anything, especially since there’s only 3 weeks left of school! Hopefully the “cleanout” is successful and helps resolve some of her other issues. She is also seeing the urologist up in milwaukee when we are there for marathon appointment day in a couple weeks to see if they can help us come up with a better plan for the issues/pain she is having. We will likely have the mito testing labwork pulled at that time too. (We haven’t done it already because a. – it’s better when done under stress like a vomiting type of illness, and b. – i don’t trust any local labs farther than i can throw them. So now we will just have it done up at childrens – which karissa has thus far not had reason to be at, but will now. got it? good.)

And last but not least – Miss Kendall – oh where to begin trying to catch up with this one???

SUPER LONG story made very short – we have been dealing with what appears to be a “site infection” where her broviac (IV) line enters the skin on her chest. It has been very painful for her for the last two weeks, which got a teeny bit better when she started IV antibiotics last week. The culture of the pus that is leaking/oozing out around the site grew MRSA (a resistant type of staph infection that we all probably carry around on our skin all the time, but until you have a deep open wound, you never know it). The ER that cultured it two weeks ago didn’t feel the need to let us know that it was growing (they determined it was a contaminant). However, given how symptomatic she was, the growing redness and hotness around the site, and the fact that you couldn’t even pretend like you were going to lift her shirt up to look at it without her flipping out all convinced her docs that we should probably treat it seriously (ya think?!?!?!? I mean, hey, it’s only got a DIRECT ZIP LINE into her heart/bloodstream. Sure, let’s go ahead and let that fester for a couple more weeks while we twiddle our thumbs. Great plan.)

And while we are very very very lucky that it was actually resistant to ONE drug that is an 8 hour dosing, it is still extremely tiring to do IV antibiotics at home. For the uninitiated, it requires about an hour of set up/prep work, time for the medicine to run in, and take off/cap. This is all good and fine for the 8 am and 4 pm dose, but man, that midnite dose is a doozy. And JUST when I could see the finish line in sight – her tpn nurse took a closer look at it and determined that it is not, in fact, getting any better. We had a very very very long day at Milwaukee last week doing a lot of testing to determine if there was a crack or leak in the line causing the oozing, going over her dressing protocol (the sterile stickers we have to put on her site to protect it every week), analyzing the site, having four other doctors and nurses analyze the site (she was a HUGE fan of that let me tell you), getting x-rays and fluoroscopy and labwork. Did i mention it was a very long day?

So now we will start one more week of antibiotics and then go back up to milwaukee next Thursday for an outpatient surgery to have her line moved. Basically, you only have a finite amount of veins that are large enough to be used for “central access”. Once they have scarred over, they are unusable. Once you’re out, you’re out. Kendall has managed to keep this line in for almost 9 months, which is AWESOME in light of the cycling infections we were dealing with last spring. Up to this point, the surgeons have been unsuccessful in finding any access on her left side – we aren’t sure if the veins are just underdeveloped on that side and she might GROW into access, or if they are just unusable period. But right now, we have half the available number of spots left for her to have access. Of course the hope is that she grows out of her need to even have the access sooner than later – but right now, she needs this line. We need this spot. So her surgeon is going to go in and keep the main catheter in the same spot, but tunnel it back under her skin to come out at a different spot on her chest to give this infection time to heal. He is pretty confident that this will solve the immediate problem – but he is hesitant to do it until this current infection is cleared up. However, her line is sliding ever so slowly out of place, millimeter by millimeter. The “cuff” (a thicker part of the line that ideally has skin growing over it to anchor it in place in the chest wall tissue) is now at the entry site (pulling all the internal tissue it was connected to with it), compounding the problems of her irritated and infected skin. Once that pulls out, the rest could easily slide out, and we would risk being able to use this same vein. I’m considering ordering a pediatric strait jacket to keep her immobilized for the next 7 days.  (i’m only kidding.) (kind of)

Hopefully it is an outpatient procedure. It is scheduled as one right now, but her last two broviac placements have taken roughly 3 times longer than they do for the “average” patient, so i’m kind of in a toss up.Hopefully since this isn’t a full “hunt and find” mission it really will be the quick in and out they are supposed to be.

She has also been having a lot more issues with her bladder/ability to pee. I won’t get too into the details but i’ll say it’s definitely not normal, makes for a LOT of laundry, and leaves her dealing with a lot of pain. She has had this issue her whole life, but it’s definitely picked up in intensity over the past couple of months. Hopefully on marathon appointment day they can help come up with a better plan, cause watching her double over in pain and knowing the only way through that pain is more pain (catheterizing her) – well, between that and the fear of her broviac sliding out, i’m on track to become addicted to a controlled substance PDQ. There’s so much more that is actually going on – but the bottom line is that overall, she’s doing “good”. The average observer on the average day would not see all that she endures, would not notice that her binky is in her mouth because she is grinding her teeth in pain otherwise, would not see her holding her tummy under her jacket, would not see the meltdown crash that comes after she’s held it together on the rare outing to the store or park. And that’s good. I’m proud of her strength and resilience. But every once in a while, i’d just really love to give her a break from it all. Be able to relieve her pain for a few hours.

Me and Ben – amazingly – have managed to have one whole month where neither of us got some crazy random injury. I know. Be proud. We’ve lost one cat, gained one dog (temporarily! we aren’t that crazy), and in general are just keepin’ on truckin’.

HOpefully i’ll be able to get more details/go back and tell more of the catchup story over the next few days. And i can’t believe I missed my own 5 year bloggiversary! I’ll definitely have to go back and celebrate that!

Thanks for comin back to check on us~

T-crest

and yeah. i got nothin’. i think just the fact that I can get semi-coherent (albeit banally boring) sentences put together right now is profound enough.

so where did i last leave off – oh yeah. floating on the grasses of gas (can ya dig it)…hopped up on narcotics outside of a starbucks. I haven’t wandered too far away from that place. The cast came off last week – HALLELUJAH!!!!!!!!!!!!!! – and i’ve been having to wear this redonkulous brace that makes me look like a retired bowler. I hate it. But I admit its semi helpful in the pain department. So I reluctantly wear it.  The final verdict was that it was not fractured, but due to the way I had torn/sprained nearly all the ligaments and tendons in the wrist/top of my hand, i had shifted the bones out of place enough that they couldn’t tell whether it was fractured or not – and the treatment was still to cast it. Let’s just say i’m persuasive when i need to be. And the 6-10 week casting forecast turned into 3 weeks, with “as long as I feel like putting up with it” in the stupid brace thing. Something else about physical therapy blah blah blah. Sure thing. I’ll call you as soon as I have an open hour in my week….sometime in 2015 probably.

Life has been about as calm as you can expect around here. since my wrist stint, no one else has had to go to to the doctor, ER, hospital, or medical setting of any kind. miracles never cease.  The girls were on spring break from school last week (3 different schools for the 4 of them – and somehow they were ALL on spring break at the same time!) Sometimes I get jealous that we aren’t in a place that we can’t just plan a nice fun family vacation to parts warm and sunny – but this is life. We hung out around here, got some cleaning done (not nearly enough – i totally fizzled out after the first day), took Kealey to see the Hunger Games movie (yes – she has read all three books as have Ben and I – another miracle!), and had our usual dance runaround!

Ok so I actually do have more to write about than i thought when i started this but the laptop battery is dying and i need to get some sleep. I’ll try to write more tomorrow.

thanks for stickin around, for those of you still here. I promise to make it up to you when we start celebrating the Terra Talking 5 year Bloggiversary at the end of this month! <3!!! Fun stuff!

Party on party people.

t-crest.

I can’t type good so i’m vlogging til the cast is off.

enjoy.

love-n-hugs -

T.

This one is somewhat self explanatory.

Some say i’m high in this (on painkillers) – but I really don’t think i was.

you be the judge.

terra

Ten years ago at this moment I was doing my hair. And makeup. And feeling very very large.

And very very excited. Nervous excited.

And crampy.

My aching back was tired of the weight it held up in front from my 10 day overdue pregnancy with what I HOPED desperately would be a baby (but had been having strange dreams about being a litter of kittens that talked instead). I was 25 years old. I worked in an office for a construction company. I had been married for almost 5 years. We had a little house in a little town outside of Tacoma, WA. It was a drizzly day.

“We” (because I don’t really remember whose idea it was to be surprised – but I’m thinking it was mostly mine, cause I love surprises, and Ben hates them) had decided to wait to find out if we were having a boy baby or a girl baby until the birth. Which was also going to be full of love, bliss, calm and quiet, in a natural environment, with our midwife helping guide us through this journey that my body would be making on its own (ok seriously I am deathly afraid of needles as large as the epidural needle is. And in my spinal cord? no thank you!) But blah blah blah – we lived in granola-ville. The end. Anyways – the day before, on February 26th, I had put in about a ten hour day, bouncing away on my back-saving huge labor ball in front of the computer, filing stuff that had been sitting out for weeks, getting things lined up – I wasn’t having full blown contractions, but I guess it was my mind’s way of “nesting”, getting things ready for the birth. I remember being at the office with one other person there, and my friend Mia was talking me through the “weird asthma attacks” I was having (they were actually super high contractions beginning – that would hit so close to my crushed lungs that I thought I was having an asthma attack when I couldn’t catch my breath), and going home and eating almost an entire box of cereal (I usually despise cereal – that should have been my first clue!). Ben went to work around 3 am like he did at that time of our lives – and I basically stayed up after he left – I could NOT get comfortable! Looking back now of course I see that I was in early labor – but I remember then just feeling like I was never going to not be in pain again. It had just been dragging on so long! (Ok so i had worked myself up into having a Valentine’s Baby and when that didn’t happen I got a bit dramatic about being so overdue…)

And then on the day of her birth, I got up, did my hair, went to talk with my mom at her work who convinced me my “asthma attacks” were probably going to need to be checked out and that I should call Ben home from work. He took me out for a nice lunch that I could eat exactly two bites of, and off to the hospital we went. Funny story about checking in: I had just been at that hospital on the SAME DAY the year before because of a broken shoulder, so when I went in – huge as a hippo, breathing like I had run a marathon, gripping the counter in pain every time the waves of contractions hit, the nurse was like “when did the incident occur?” and I was like thinking – oh my gosh she has to know when we had sex and got pregnant?  “It was roughly 9.5 months ago, I don’t remember the exact date” and she was like – “You injured your shoulder 9 months ago and are JUST NOW coming in???” I was so baffled I couldn’t even form coherent words at that point so I stood up and pointed to my stomach  and she got the picture then. It wasn’t until later that I was able to put together that she had just looked at the date of my last check in, assumed I had been sent to the hospital from an urgent care, and was just there to check boxes on papers!

Anyways – it seemed like a LONG time from that point until I met my baby girl – but it was actually only about 6 hours. I labored on a ball and in the bathtub and i was sooooooo delirious with pain by the time Ben had to literally drag me out of the tub because my legs were one huge contraction. I remember walking to the bed from the bathroom and they had the lights dimmed and the table all set up and the little baby warmer in place and i started to sing “happy birthday”…and then a few of the most painful intense waves of pain I have ever endured in my life, and they put her on my tummy and said – tell everyone what you have!!! And i looked at her and I was so confused because it was all so swollen (as babies usually are) and I was like – “ i have a hermaphrodite child!!!” and started crying and the midwife had to yell out “It’s a Girl!” so my family behind the curtain could all know that she wasn’t really a hermaphrodite.

and I looked into her eyes and told her “hi baby girl – I’m your momma!”

and that is pretty much all I remember about the next 9 months or so.

She made me a mommy. She has taught me how to learn being a mommy at every age and every stage.

She is a beautiful wonderful little girl, with an amazing laugh, and beautiful eyes that sparkle like sapphires every time she is super excited about anything. She carries the weight of a world far beyond her 10 years on her little shoulders. She has seen more, and learned more, and knows more about real life, and real priorities, than most 10 year old little girls I know. I wouldn’t wish a different life for her – because I know these things have made her the awesome person she is today, and the one she will grow up to be someday.

I can hardly believe it’s been ten years.

I hope you have a wonderful birthday  Kealey Grace – I’m so glad your littlest sister didn’t try to ruin your birthday this year by being in the hospital like she has for the past few years! We’ll party it up soon!

love,

your momma.

OZzzz’s aren’t really full of magic. (Although I personally feel it should be listed as a key ingredient because of how well they work!) They are a scientific blend of melatonin (a naturally occurring brain chemical that helps slow our minds down enough to enter restful sleep), and chamomile (an herbal supplement often made into a tea that helps calm us during times of hectic activity).  Many kiddos that I know through my moms group of special needs children use melatonin as a means of helping reset the sometimes crazy brain activity that can be a part of a multitude of disorders. It has been proven through many years of research to be a safe and effective natural sleep aid. Coupled with the chamomile, it is just the right blend to help active kiddos calm down at night, and get in bed.

I kid you not – the VERY first pill we gave to Kaylen (nicknamed Hurricane Kaylen around these parts) – she was CONKED out cold in the middle of the day within ten minutes. THAT NEVER HAPPENS. We were shocked. And hooked. Which is why I now order in bulk. Because regardless of what the label says – I promise you these pills are magic.

And tomorrow night – you have the opportunity to come have a chat with me and the amazing mom who started it all, Darcy of OZzzz’s Sleep Aid for Children. We will be talking about sleep issues in kids, how to address some of those concerns, and answering your questions about this awesome product. you will have the opportunity to win some fun prizes, including a free bottle of the OZzzz, and we have an AWESOME grand prize for the end of the party – a “Sleep Is Fun” gift pack that includes a brand new Pillow Pet!!! (my kids are addicted to those things and are seriously jealous!)

Never been to a twitter party? Ohhhh you’re missing out! In a nutshell – it is a bunch of people tweeting back and forth with each other in a “conversation”. You receive these messages because you are all using the same hashtag – in our case its the “#SleepOZzzz4Kids”. The host(s) will ask a question and the attendees will all reply to that question – sometimes with an answer based on the product, sometimes with just personal experience! It is all designed to foster community, awareness of a brand or a product, and make new friends. It’s super fast, super fun, and I super hope you will all be there! (even if you aren’t a huge twitter user – it can still be lots of fun! Give it a try – for me!)

Here’s the 411 on the party:

Tuesday Night, February 21 at 7pm Central!

Follow hashtag #SleepOZzzz4Kids

Follow me on twitter:  @TerraTalking

Follow Darcy/OZzzz’s Sleep Aid on twitter: @OZzzzsSleepAid

Keep up with the latest info on our facebook pages:

Terra Talking The Blog – facebook fan page

OZzzz’s Sleep Aid – facebook fan page

I would strongly encourage you to go poke around the OZzzz website a little bit – “SOME” of the questions for prizes might come from the info contained therein. (cough cough – About OZzzz and FAQ’s – cough cough!)

You can follow along with the party on our custom TweetGrid or just plug the hashtag into your favorite Twitter Client.

You can win any of the smaller prizes just by showing up and being a part of the party – but if you want to win the GRAND PRIZE – you gotta RSVP here!

Just enter your name and your twitter handle/name into the Linky widget below (type www.twitter.com/”yourtwittername”, or just put @”yourname” in the URL option).

Let me know if you have any questions! Hope to see a lot of you there!!! Tomorrow night – don’t forget!

Terra

See, a few posts below the ones about the vacations and pedicures and clean houses, was one about a good friend of mine’s daughter, who spent the entire night in an operating room, receiving a new small intestine – and a new shot at life. I knew that she was likely going into the surgery last nite before I went to bed, and I fell asleep uttering prayers of strength for my friend as she and her family sat in the waiting room, for her beautiful daughter “N” as she endured a surgery of this magnitude, for the surgeons as they performed this life-saving and life-giving procedure, and for the family of the child whose organs were being transplanted.

Today she is still sedated in the PICU – but the surgery is complete and “went well”. She has a huge uphill battle ahead of her – but the smile on that little girls face – speaks volumes about the kind of inner strength she possesses. She has fought against a GI tract that has really never worked for 5 years. And now she will have a chance at someday being able to eat, of being able to get off of life-saving TPN (IV nutrition delivered through a central line in her chest – like Kendall has currently). And while my heart aches for the immediate part of her journey in recovery from the transplant, I am SO excited for the future that she will now have because of this transplant. Please join me in prayer for Miss N and her family as she continues on her journey in recovery! And also please pray for the family who made the ultimate gift – choosing to donate their child’s organs so that others could have a chance at life. I cannot imagine their pain and grief today – and hope that they receive some comfort by knowing that their sacrifice has helped other children today have hope.

I am also reminded of another little girl’s battle – on this day one year ago. It was the night of Kendall’s first benefit, and I left her in the hospital with Ben while I went to pick up my babies from school and drive to the benefit. Ben tried to put me on speaker phone when the team was rounding, and I only caught every third word or so – but I heard enough to know that it wasn’t super awesome. she had been in the hospital for two days at that point, and had been very ill at home for two days prior to that. I don’t think I even had any idea how very very sick she was… She was septic (blood infection) from two bacteria and a fungus, and was also fighting influenza A. And as sick as she was that morning when I left – she was even sicker by that evening, when we all paused to pray for Kendall. And I still hold firm in my belief that that nite, our prayers were heard.  I was unable to make it back up to the hospital that evening, partly because at that point I had been awake for almost four straight days with literally only a few minutes of sleep – and I couldn’t even function. And yet – I could not sleep that night either. Something kept me up, kept me on my knees begging and pleading for God to just fix her, make her better, let her stay here with us. And the next morning was when kaylen locked the keys in the car as Ben was calling to tell me they were taking her to surgery and I felt like a caged animal – wanting so badly to just FLY UP THERE and be with my baby and yet having to wait for the police to come and then the long drive and obeying the speed limit and just….ugh. hard memories.

And yet we have a happy ending. Here she is – having destroyed the TV room/kitchen area I worked so hard to have clean last nite because she is having a crappy pain day – but she is HERE. She is home. We are together. She has LIFE.

So how can I even think about complaining about my house/toes/lack of vacations??? I have the greatest gift of all – my family. All together. Under one roof. Mostly healthy.

No words for my gratitude today. Just thank you.

Hope you all have an awesome weekend! Don’t forget to go like “terra talking” on facebook! I’m still fine-tuning the new blog look and will reveal it once we hit 250!!!

and to everyone who helped sign our petition – we hit 1000 after four days! We are shooting for 10,000 now! Thank you for helping us Keep Kendall Home!

terra

it was about being able to connect with people. People who read the blog, people who stay updated on facebook, or through my mom at MOPS, or through whatever weird network of relationships that somehow twists people together. I loved hearing your stories, seeing your faces, being able to hug so many of you. It was about having this overpowering sense of gratitude for all of you who worked SO HARD on this nite, and the families who supported you through such. For all of you who planned, created, worked on, sacrificed for this nite to be such a success. For the words of support and love in the video at the end that absolutely had me bawling. This all gave me such a sense of …. I don’t even know how to word it right! Like I feel like we have been given the greatest gift in the world – and my responsibility now is to share that with others. To take this love and support and multiply it and pass it on.  And I am so excited to get started doing that!

This whole event gave me such a renewed sense of purpose, of energy, of an “oomph” to keep pressing on. One that I didn’t even realize I really needed, but am so glad I saw and received.

We are so blessed that not only was Kendall healthy enough to attend the benefit – but that she had what I can only term a “supernatural” boost of energy to be able to last the entire nite – and not just last – but to be the most pain-free, the most energetic, the most engaged without being overwhelmed that I have really EVER seen her. I know so many people were praying for her that nite, and pray faithfully for her every day. And Friday nite was truly an answer to those prayers. I hope that for all of you who saw her running back and forth between our table and my parents’, and stealing all of the crackers from the cheese trays, and dancing with her sisters while the wonderful Lexi Elisha was performing – I hope that what you saw was the hand of our Loving God reaching down and giving her the strength to do all those things. My heart was so full watching all of her sisters run and play together. Kaylen was still a little reserved, not feeling quite up to her normal par – but they were all there together.  It was awesome, and again was part of the renewing of my heart, of strengthening my reserves for those days it seems like its too crazy to move, of creating those moments in time that fill your heart so full it feels like it might explode open from happiness and pride right inside you. Contrasted to last year on this nite – seeing kendall running around is nothing short of a miracle. And I think of all that she has fought through from last year to this – and I am so so so thankful and grateful. For her continued improvements and healing, for the love and support that has gotten us through this year, and for the love and support that we are surrounded with moving forward to whatever this year holds!

Anyways – it was an awesome night. And I’m sorry for those of you who weren’t able to be there that I can’t adequately describe it all. It was a blast playing trivia (they are some TOUGH TOUGH Questions!!!!) and I hope all of you who were there had just as much fun as we did – laughing, joking, smacking ourselves in the forehead when the answers were revealed! Erik, our emcee for the nite, was a ball of energetic entertainment as usual! Lexi and her amazing band gave an awesome performance and ended with some great worship time. The Silent Auction was full of amazing products/services – and I cannot thank those of you who donated to that portion enough! And of course, the live auction of the Kitty Bath drawings was the point of the evening where i thought i might pass out from laughing so hard! Erik reading my “scintillating dialogue such as ‘you suck’ and ‘actual bathroom space’” was what threw me over the edge! And it ended with the man of few words getting up to thank everyone. I was crying so hard over the ending video that I literally could not talk but pushed ben up to get the microphone (I think he was planning on saying something anyways, but by that point it wasn’t really a choice!) And then to everyone who stayed to clean up – thank you. To the girls who took my girls and taught them how to sing into microphones and danced around with them – thank you! There just really aren’t enough words.

I am going to copy in part of a “thank you letter” I had written a while ago to attendees of last year’s benefit. A large part of this got edited out (Because I am too wordy) – but you are already a captive reading audience so here you go. This is for all of you – whether or not you came to the benefit, or sent money in to be donated, or haven’t donated a single red cent but have read, and prayed, and supported us with your love – everyone.

Simply put, our family would not have survived this past year were it not for your help, support, blessing, prayers. YOU are all a huge part of Kendall’s story. And I honestly don’t have the words to fully express our thanks and gratitude. I want you all to come this year not so much to give again – but so that I can line you all up around that room, and give each of you a hug, and tell you thank you, if I can squeeze the words out around the tears. Thank you. Thank you. Thank you.

We hung the window that you all signed up in the hallway. Many many many nites as I have trudged up and down the stairs after fixing Kendall’s position so she gets more oxygen in and stops setting off alarms, or I’ve troubleshooted a grumpy IV pump for the 17^th time that nite, or I’ve just gone up to feel her breathe, check her forehead with my hand, watch her sleep – I will see the names there. And I will put my hand on that frame, and I will ask God to please let each and every one of you know how much of a blessing you are to us. I ask that somehow He shows Himself to you in the form of a blessing that you need – a life-saving, world-changing blessing at just the time you need it. Just like you all were for us.

There is a scene in the movie “Saving Private Ryan”, where Tom Hanks’ character tells Private Ryan “Earn This. Earn It.” – referencing the fact that Private Ryan had been saved through the selfless sacrifice of so many other men, to live his life in such a way that it made their sacrifices worth it. At the end of the movie, Private Ryan is an old man, bending over the cross of that captain in the cemetery, his family in the background. And he says to the captain’s cross – “I tried to live my life the best that I could. I hope that was enough. I hope that, at least in your eyes, I’ve earned what all of you have done for me.”

And that is what I wanted to say to all of you today. I know there is no earthly way that I could ever adequately say thank you to all of you for what you have done for us. But I hope that what we have done, and what we will continue to do, is enough. We will continue to stay strong as a family. We will continue to live every day by cherishing the life we have been given. We will continue to hope for good days, healthy days,  healing, a cure. We will continue to spread the message of hope, and the Author of Hope with everyone we meet.

We will continue to earn it.

Every day we are blessed to live.

Thank you.

I know there will probably never be a way I can sum up our gratitude in words. But I will never stop trying to live this life purposefully – to give action to the gratitude I feel, to continue to send your generosity, your love, your support even farther across this great world we live in.

Please go to the Hope for Kendall website that the benefit coordinators run and update – there are new videos (including the one that had me sobbing!), and all the photos from the nite! (if you click on the pink polka dot picture it will take you to the website also)

Thank you for checking in! Be sure to keep checking back in – I have a BIG change I am working on for the blog and I hope you all love it as much as I do!!! Go tell your friends to like the Terra Talking Facebook Page! I’ll unveil the newest blog design as soon as we hit 250 fans!!! (or as soon as I get too excited to show it off and can’t wait anymore!!!)

Spread some love today – and leave a comment about how you did it – or a time when someone did something for you that made YOU feel loved! It IS almost Valentines! (which, coincidentally, is one of my favorite holidays ever!!! and did i mention that I am in charge of the party for Kealeys class tomorrow??? does anyone have 23 pairs of chopsticks laying around??? let me know!!)

terra.

For those of you who have not seen me plaster this all over facebook – or those of you who have but don’t understand it – I am hoping that this explanation can help move you to take action and sign our petition!

Basically here’s what is going down:

The state of IL has some major budget issues. This could be because our former governor decided to gamble away the tax money coming in, or just take it for himself, but either way – they have no money. So – as any good responsible entity would do, they are looking for ways to cut spending. And they decided that the best way to carve some extra money out of their budget would be to take it away from possibly the most vulnerable group of all – medically fragile, technologically dependent children.  There are about 500 kids in IL who receive a waiver for Medicaid services based on their medical complexity. Basically, these kids require such a high level of medical intervention to stay alive every day that without this waiver providing nursing, access to services, help with some medical/drug coverage that primary insurance doesn’t cover – they would live in a hospital setting.

Kendall is one of these kids. I searched and fought for the better part of a year to get this waiver in place for Kendall. And once she received it, her case manager was appalled that it had taken us so long to get it. She has told me that Kendall is one of the least serviced yet most complex kids on her caseload. We specifically try to be as complacent as possible – even though we could push for much more in the way of nursing hours. We don’t want to be a drain on the system simply because Kendall qualifies. We just want what we need in order to keep our family functional, and keep Kendall home as much as possible.  Part of this waiver also provides help with some of Kendall’s medical bills and a few of her monthly prescriptions. It’s not a lot, mostly because the most expensive of Kendall’s medications every month are “black-listed” from medicaid (meaning there is such a high risk/benefit ratio that they will not pay for that med, but would pay for a similar substitute. Except there are no substitutes for these!) We are EXTREMELY lucky to have good insurance through Ben’s work – but they do not cover private duty nursing, they do not cover 100% of her medical bills, and they still like to drag out payments on the stuff they DO cover. Keeping up with insurance for a kid like Kendall is pretty much a part time job in and of itself. Add in the rest of the medical paperwork, the school papers, the nursing admin stuff, the appointments – oy. That’s easily 40 hours a week. And that’s not even including the actual CARE of Kendall!

Anyways – all of that to say – this waiver is literally THE only thing that is keeping our family together. Keeping Kendall out of the hospital on a much more frequent basis, keeping Ben and I (mostly) sane, keeping us out of bankruptcy. If this cockamamie plan of the state’s goes through, and they yank funding for this waiver, we would be forced to decide to either permanently hospitalize Kendall to receive the medical care she requires (and keep the waiver in place for her to take care of that bill),  or attempt to handle her heavy medical care on our own, and lose the nursing hours, the extra waiver help, and STILL likely end up with more hospitalizations because as much as I like to play nurse on TV, i am not one.

and as crazy as this would be for OUR family – there are 499 other families who would be equally, if not more, affected. Beyond the fact that it is appalling to think of taking the money from this vulnerable population, the fact of the matter remains – this would not save the state a single red cent. Hospitalizing kids like ours cost a HECK of a lot of money. It is ALWAYS better/cheaper/smarter to keep these kids in the home setting, receiving care in their own home, not being exposed to hospital germs, dealing with locking up valuable hospital resources dedicated to the 1-1 care most of these kids require.

So I am asking you all – PLEASE click on the link above. It takes less than a minute to fill out your info (you can check at the end to keep it private, and still have your name counted) – and you DO NOT have to live in Chicago, in IL, or even in the USA. We are aiming to have 1000 signatures to present to the board making this decision in the next few weeks. Ideally, we’d have even more. REALLY ideally we would be able to have the same public outrage against this that I have seen other issues get. It IS outrageous to think of – mostly because of the upheaval to families that it would cause, and STILL not really help bail our state out at all! It would be a huge waste.

As an added bonus – or heck, a MAIN selling point if you’re like me and have a slight problem with authority – EVERY SINGLE TIME someone signs this petition, an email is sent to the Director’s email inbox. I personally get a warm fuzzy feeling having her receive multiple emails every hour reminding her of what a stupid idea this is and how many people think it’s a stupid idea.

Affect change. Be a part of a revolution. Make a difference. I promise it’s easy and painless. If you are getting an error message – PLEASE keep trying. It just means that a lot of people are trying to sign it at once – and that is an awesome thing! But your name WILL make a difference! And after you sign – share it! Share it on facebook, share it on your blog, share it on twitter. OVERLOAD that poor lady’s email!!! Stand up for kids who can’t stand up for themselves, and be a voice for families who are so overworked that they don’t have a voice left.

Thank you thank you thank you – from the bottom of our hearts.

terra.