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.

In the scheme of preparing for tomorrow nite’s big festivities (or tonite by the time most of you will read this) – my workload is really nothing by comparison.  But between now and then – it seems like I have to be in about 82 places at 6 different times.

I am mostly really not wanting to forget that I have to be the mystery reader at school for karissa’s class.  Or all the stuff that is my responsibility for the benefit. Or to pick up kaylen from preschool. Or to pack up all of Kendall’s tpn/fluids/stuff she will need to be hooked up to in the middle of the benefit. Maybe i should start a list. Or is this a good list? Oh look something shiny!!!!!!!

Also I have been freezing cold all day and canNOT get warm and this is supremely annoying to me. It is probably because i waited outside for kendall’s bus at o-dark-thirty this morning with only a long sleeved t-shirt on and it was easily a windchill of 15 degrees. Also I am currently starving.

Other random factoids about today: I spent it sewing. I got some wild hair about sewing skirts for all the girls for the benefit tomorrow nite to go with their CUTE new t-shirts with the hope for kendall logo on them – and yeah. ALL DAY. I can also still taste the bacon bits I had for lunch. Kaylen had a pretty good morning but hit a wall this afternoon, due to over-exhaustion i’m sure. Kendall has actually been needing the pulse ox more, so I haven’t been able to keep an eye on kaylen’s like i’d like to – but this is probably a good thing. My bedroom looks like a respiratory torture chamber with all the tubing for oxygen/nebulizers, little plastic med packages, emesis bins (clean and unused but ready just in case!). All of the medicine kaylen is on right now is tough to keep up with on top of kendall’s stuff – but hopefully by this time next week she has totally turned the corner. oh shoot one more thing I can’t forget – her ENT followup appointment. that I need to schedule still.

So basically – I have a lot of stuff to do tomorrow, but it will be FUN stuff (unless i forget someone, in which case it will be pretty UNfun) – but we will all hopefully end up in the same place tomorrow nite, which is the hope for kendall benefit!! So excited to see everyone, and all the hard work that has been done. And on that note…I should go try to get some sleep. Definitely gonna be a long day tomorrow.

Never forget how awesome you are. Cause you are.  Thanks for being you – and for being a part of my life!

have a beautiful friday!

terra

*no, the pictures do not mean anything. They are as random as the rest of this post. Enjoy!*

I have to make a list so I remember what I wanted to talk about because I keep getting distracted by shiny objects and people talking at me….

Kaylen’s recovery.

i want to sew something.

photography challenge.

drawings of the casket truck incident. or possibly when i tripped onstage at the national spelling bee.

other blog changes.

So – ok – 9 hours later…

I might have enough time to just update on Kaylen!

When we left off last she was still in the hospital, having a really rough time breathing, and we were getting pretty much NOWHERE with the doctor who came on Friday nite. They were letting Kaylen sit at an extremely low oxygen sat number, and our nurse tech and nurse were both getting very agitated at the doctor for us! I asked them to please start a steroid – either in her IV or nebulized – and they said she shouldn’t need steroids this far past surgery, so they would just give her oxygen. I was ok with this, assuming we would cram her full of good stuff Friday nite and bust outta there early Saturday morning. Not so much. Saturday morning the doctor tells me that because kaylen was on oxygen the nite before, they couldn’t discharge her. She had to have 24 hours O2 free before she could go home. Oh i hit the wall right then. It was about the fourth time that i had heard this doctor talking out of both sides of her mouth and STILL not giving me any real answers, so we came up with a “compromise” whereby they would give kaylen a nebulized steroid, and then she would take a nap, and if her sats stayed up during naptime, she could go home. Awesome. Just give me a target to hit, and i’ll hit it. Since they didn’t clearly define what “up” or “nap” meant – I took that to mean that if she laid still in bed for about 30 minutes and didn’t immediately drop to the low 80’s that we were good to go. As soon as she DID start to drop, I woke her up and told the nurse we were ready to go! It was STRONGLY ENCOURAGED that we get an appointment for first thing monday morning with our pediatrician – which is kind of like saying we should get an appointment with the president first thing monday morning – it just ain’t gonna happen.

BUT – in an awesome twist of circumstances that only God could work together – our nurse tech happened to be one of Dr. natalie’s former employees. Who knew us. Who knew that if i was worried, something was wrong. And she went and faxed the office right then and there. And when I called Monday morning, they had an appt at a very easy to attain time. So in we schlepped. Where Dr. Natalie was properly horrified at a.) how crappy kaylen was still breathing, and b.) the very wrong info they were giving us in the hospital regarding what was “normal” or “ok” for kaylen to be feeling after the surgery. She sent us for an immediate chest x-ray, gave kaylen oral steroids right there in the office and called in scripts for more steroids (kaylen + ‘roids = UGGGHHHHHH), more antibiotics, more nebulized meds, and threatened re-hospitalization. She told me the only reason she wasn’t sending us right over to HER hospital was because she knew that if any mom could handle pneumonia of this level at home, it would be me. “Handling it” meaning being utterly exhausted from the every 4 hours med schedule, plus the breakthrough “cough up your spleen” fits, plus the care the other one still needs! But yes – I am glad we could handle it at home, even though i was a little nervous that we would be on the losing side of that battle to stay home.

I am happy to say that I think we are FINALLY making the turn for the better around here. She went back to preschool today, came home and took a 2.5 hour nap, so I thought we’d see how dance would go (she was BEGGING to go!) It was obviously a little much as she is definitely looking like she got hit by a mack truck. But tomorrow we have a pretty light day and she can get some more good rest in. Kendall will hopefully wake up back to her “normal baseline” as she is starting in with some wonkiness that could go either way at this point. but hopefully it’s just one of those off weeks and she settles it all back down soon. Karissa is also having a very off week with some pain, exhaustion, general moodiness and deciding that the main portion of her dietary intake will be those pediasure “sidekick” drinks.  Just another regular week around here! Ben’s been in PA all week, but I am assuming that healing in the kitty war wound is continuing along swimmingly.

And now that it has literally taken me ALL DAY to write this drivel, I’ll wrap it up.

And hopefully get to the other shiny objects tomorrow!

thank you SO MUCH to all of you who have made donations to the Hope for Kendall benefit – I just want to give you all such a big hug!!

love -

terra.

Last year during Kendall’s hospitalization after Christmas, our angel walked into our hospital room, and instantly started lighting things up in our corner of the world. She put together plans for a fundraiser night, corralled a group of people into helping put on one of the most beautiful benefit dinners I have ever had the honor of attending, and in no uncertain terms, helped change our lives. Everyone who was a part of that nite, was a part of changing our lives. And that is not to in any way negate the also life-changing gifts that our neighbors pooled together – that was also very huge and very helpful. Or the awesome efforts of a local baseball team and the women who keep those boys in line this summer! Our family has been so amazingly blessed. Beyond words blessed.

So when I was again approached about picking a night for this years benefit dinner – I was blown away. I was amazed – because this year it wasn’t just Mary helping organize it – it was a group of kids from the youth group at Alpine Chapel (where my dad is a pastor – about an hour away from our home). Kids. (I know they think they are not kids, but they are. They are amazing awesome kids and people!) And those group of kids came to our house, and sat and talked with our family. They read the blog, read Kendall’s story, read about mitochondrial disease and its effects on the whole family – and decided they wanted to do something to help. So they started planning the 2nd Annual Hope for Kendall benefit. They made the video, created the website, sent invitations and in short have worked their hearts out to make this upcoming night a success. Every time I get an update from one of them, or see them promoting the benefit on their own facebook pages, my heart swells with gratitude, pride in what awesome people they are, so many emotions. It is not always easy to admit that we need help, or ask for help, or even sometimes to accept help. It has been a hard part of this journey, having to admit my own weaknesses. Cause remember? I’m wonder woman, with my bullet deflecting wristlets of power. Except I’m not.

So it’s hard to know where is that fine line between wanting to be too pushy about the benefit here on the blog, because I don’t want anyone to think that it is ME asking for money for US. But I want you all to know about the awesomeness of these kids, and our angel friend Mary. And how we want this year to be the year that our dream for a foundation in Kendall’s name to help other families like ours can come to fruition. The Hope For Kendall benefit dinner isn’t just about Kendall. Or even about our family. It’s about families all over who struggle with the same things we struggle with every day – running a hospital out of their child’s room, trying to act like its perfectly normal to haul a wheelchair out of the back of the car and attach pumps and tubes and cans of oxygen to it, like everyone knows the hospital cafeteria schedule off the top of their head. And while that CAN become normal – everyone needs a little of the REAL normal in their lives. A fun night out to eat as a family, difficult as it may be to get out the door. A chance to go see Disney Princesses on Ice, or the dinosaur exhibit at the museum. Help being able to keep their “healthy” kids in outside activities because so much of their financial efforts are focused on keeping their medical kiddo alive with meds and interventions and therapies that insurance companies refuse to pay for. These are some of the things we dream about for the Kendall’s Hope Foundation.

And the benefit dinner/trivia night/concert is a kickstart to all of that. So I know that this friday nite might be coming up quick. And maybe you already have plans, or it seems like a long drive (if you live down here by us and have never even heard of Lake Zurich – but i do promise that it is a real town and its not as far away as it sounds!), or any other reason you may have for not attending. I’d love for you to come not JUST to show us your support, but to show these kids your support. To show them that you appreciate that in a world of self-centered, bratty, “humanity is doomed if this is the next generation” kinds of personalities among teens today – that these kids are so selfless, so generous, so amazing. They have some pretty big goals for this nite that they’ve put so much time and effort into. And again – it’s NOT ALL ABOUT US! I just need you to know that. I want to help them reach these goals to show them that their hard work is ALWAYS worth it.

So – if you are local, and would like to come in person to the event – you can email Mary at hopeforkendall@gmail.com  and tell her how many tickets you would like. They are $20 each. i think one of the goals they were trying to hit was to sell 25 more tickets. The main portion of the event is a trivia night – kind of like the hugest game of trivial pursuit you have ever played. It is a LOT of fun if you have a whole table of friends you can make as your team – we play against other teams and there are actual prizes handed out. It got pretty crazy and competitive last year and I am looking forward to this years competition! It is being held at a church in Lake Zurich (if you’ve never had reason to drive up there, its about 15 minutes north of Woodfield Mall in Schaumburg. My parents live there and it takes me about an hour-ish to drive there in normal traffic.) It would mean so much to me to see you there! If you live locally but can’t attend – we are still taking donations of services and products for the silent auction portion – so if you can donate something – you can also email mary at the above address, or email me with details! or maybe you don’t have something to donate for the auction but you can whip up a mean cheeseball or some wicked beanie weanies for an appetizer or a dessert type thingy (can you tell i don’t cook much???). I can take any food donations up with me – so just let me know if you want to help with something like that.

Lastly – if you can’t attend in person, and live too far away to share your awesome appetizer skills – I am going to be having a “Terra Talkers” table. (Or maybe even TWO!) It won’t be quite the same for the kids as having real live bodies in the chairs – but i’m hoping to help them at least hit some of their “numbers” with this! SO – here’s how it will work! You can go to the Hope For Kendall website, and on the front page above the video is a PayPal “donate” button. (for the record, all of the donations made through that link go to the Kendall Quinn Fund – not to me personally! We want it to be as “up and up” as possible!) If you click on that button you can “purchase” a $10 virtual ticket (by making a $10 donation – just put “ticket” or “terra talkers” in the comments or something like that!). A full table is 8-10 people – so let’s see if we can make this happen! On Friday afternoon – I’ll post a link of some kind to the “virtual trivia game” that you virtual attendees can play! The person with the most right answers by Friday at midnite will win a prize (and i promise it will be better than a hand-drawn kitty bath illustrated book!)  But speaking of that – the ORIGINAL drawings of the kitty bath post will be being auctioned off at the benefit event – I think the starting bid will be like a quarter ($.25!)  If you want to virtually bid on these awesome, inspiring pieces of artwork to grace YOUR home – leave me a comment and I’ll be sure to update either here or the Terra Talking facebook page what the bid is up to and I can enter your bid in person!

So – Live and In Person, or via virtual attendance – I hope to “see” you all there! we cannot thank all of you enough for your support of our family in all the various ways over the past few years. YOU are the reason that we keep going even when it seems like the hits just keep on coming! we couldn’t do it without you – every single one of you!

Thank you so much~

terra.

(and the whole crew, who are going to try  their best to stay OUT of the hospital until at least after Friday. amen.)

In case you aren’t a fan of Terra Talking on Facebook (and if you’re not, why aren’t you? click over there to the right – you can “like” it from right here on the blog!!!!) – then you may not know that we have spent the last day and a half in the big house with Kaylen, getting her rehydrated, giving her some IV pain meds, helping her airway do its job and keep her oxygen saturations up. She was a very very very sick little girl yesterday afternoon, and I was a very very very frustrated momma since I felt like the ER doc was missing the point that sitting there crossing our fingers and wishing on fallen stars that she would just sit up and tell us she was all better was highly unlikely to happen.

Finally after sitting there for 6 hours and literally dumping two bags of IV fluids into her with extra dextrose to try to bring up her low sugars, the doc realized it was a losing battle and admitted her for more IV fluids and pain meds. By that point she was already on the oxygen as well in order to try to keep her sats (oxygen saturation in the blood) up to an acceptable level. (Typically you should be around 99-100% oxygen saturation – and Kaylen usually is the few times I’ve checked her at home. Kendall’s orders from her pulmo are to stay above 94% or keep her symptom free – and Kaylen was sitting around 85-86, not waking up, and not responding to me moving her position, beating on her chest, or sitting her up.) From that point things continued to be not well – but we got up to the floor, and this doctor was MUCH more on top of things.

They ordered a chest x-ray because Kaylen’s symptoms were consistent with pneumonia, and she had decreased/rough sounds on her right side. The thought was that she was in early stage pneumonia, possibly induced by the intubation during surgery. All of that makes a lot of sense – but it didn’t make the nite any easier trying to deal with her horrible coughing spasms that were happening every few minutes. It was a very long, somewhat scary nite as at one point they bumped her up to 2L (two liters) of oxygen support and her sats were still in the lower-mid 90’s. Now I know that for some “medically compromised” kiddos, these numbers aren’t bad – but with my healthy little hurricane – I felt lost. I am not used to having to worry about her like this, and I didn’t know where/how/when to advocate and when to let her body just do its own fighting. Luckily our night nurse was very proactive and very helpful in keeping the fever under control, getting the tremors induced by spiking fevers to stop, and getting kaylen comfortable enough to at least “rest” in between coughing fits. They cranked up the fluids, stayed steady with IV ibuprofen, and we “woke up” this morning with a much happier and more engaged Kaylen.

Over the course of today we have been able to turn the oxygen down and she is actually right now on room air. Sats are dropping again as she is trying to nap, but nothing that is super worrisome and we can’t manage at home with a hit of O2 here and there as needed. She has trialed a couple hours off of IV fluids, and with a LOT of convincing we were able to get her to take her oral pain meds (a huge part of being able to go home – she has to be able to take all of her pain meds by mouth and have the pain stay controlled enough to eat and drink). A good friend brought up some “rescue fluids” – a McD’s coke for me and a strawberry banana smoothie from mcD’s for Kaylen – and boy did that help perk her up. She sat there and nursed that thing for a good hour – and I think that is when we started to see more of the Hurricane come back.

So she’s had a good day of making good forward strides – but still isn’t quite where I’d like to see her before I take her home. I would absolutely hate to have a repeat and have to bring her back. The team here is all really great, very supportive, very knowledgeable about “kids”, and we are in good hands. I wish they weren’t so cavalier about her oxygen levels because I think all we are making her do is burn up the IV hydration by trying to breathe faster in order to oxygenate herself better. And they are hesitant to pull any labs to pinpoint a direction because as the doctor says “they WILL be all messed up – she just had a pretty major surgery”. And we can’t do a flu swab (viral panel) because it will very likely cause bleeding in that very sore area, and it may or may not even yield useful info. All of this I understand and agree with from a medical point of view. But from my momma point of view, I just want her fixed. I want there to be some THING we can do to speed up the healing, or to relieve all of her discomfort. I want to not have to pin her down with my knee and force her jaws open to get her to take her meds and a few sips of water by mouth. I really want to not have to bring her back here in a couple days if this doesn’t get better. I want her to be able to sleep without busting into a major coughing spasm or have me have to beat on her chest to get her to wake up enough to take a breath/break up the mucus.

I just want to be home, with my whole family. I want to sleep for five straight days. I want the backs of my eyes to stop feeling like they are being stabbed by alien toothpicks.

I’m too tired to write coherently at the moment, and Kaylen is now satting in the low 80’s and having a hard time waking up. So i’m probably gonna have to go find someone’s shins to kick since there are (blessedly) no doogie’s here in this hospital.

peace out party people. Thank you all so much for the messages/emails/texts of love and prayers and support. For those who have asked – I think we are almost out of coke at home. I’ll have to double check with Ben! But if you are one of the ones who said you would be at the store and will be swinging by our house at some point – a 12 pack would hit the spot. And trust me when i say i will need the caffeine to survive the next week.

I’ll update you all when I know more!

terra.

Ben is home and still has a pretty puffy hand, but is recuperating from the effects of “sleeping” on a hospital bed for two nites, and fighting a nasty infection. Kaylen is definitely attempting to recuperate from her surgery yesterday. I am recuperating from…life. the big girls are recuperating from once again having their lives and schedules thrown upside down, and kendall is just truckin’ along!

Poor Kaylen – I mean, i knew it was going to be rough. but having head knowledge of how much pain your child will be in, and actually trying to hold and comfort a baby who has NO IDEA why everything hurts so badly and just wants you to fix it are two polarly opposite concepts. She is understandably in a lot of pain from having her extra-large tonsils and large adenoids removed. I was actually shocked as i looked in there for the first time post-op – it was just so HUGE in there without all that swollen nasty tissue! Poor baby – she must have been hurting for so long for as big as they were.

So anyways, our day today has been spent trying to convince a hurting 4 year old that drinking something – anything – will not hurt that bad and will help her feel better. I’m not sure if this is true – but they tell me this is what i am supposed to do, so I do it. It is heartbreaking to watch her fight to get down the teeniest amounts of water or juice, and to talk longingly about when she can eat food again. I’m not kidding, this is the kid who usually has had three meals before I’ve even made my first cup of coffee for the day. she eats non-frigging-stop. Snack QUEEN. I am sure she feels hungry – but knows she just cannot get it down right now. As long as we can stay on top of keeping her hydrated, I think we will be doing good. But even that, I’m questioning right now. She had MAYBE 6 total ounces of fluid today, and most of that she had to work at to get it down, and then fought for a while retching after she did finally get it down. She still has a teeny fever even after taking the tylenol/codeine combo, which she is getting every four hours on the dot, which is also very hard to get into her because she is NOt interested in swallowing anything.

At this point, it will be awesome if we can muddle through this without having to go back in for some IV fluids. I feel so bad for her though….no good solutions – just gotta push through.

So push through we will!

We got a lot of fun stuff coming up this weekend (and even more fun stuff NEXT weekend with the Hope For Kendall benefit!!!) and I want EVERYONE to be there and be happy and be healthy.

Thanks for stopping by~

terra.

Here is how our cat bath went the other day – complete with illustrations!

Please pay particular attention to my “sneeze” detail with the green ink, and the Buzz Lightyear helping hold down the wayward corner.

So Ben gets this great idea last weekend from a facebook post that if you wash  the cats in fabric softener, it takes away the proteins of their dander and you are therefore not as allergic to them. and yes, we are all allergic to cats. No it hasn’t stopped us from having them as pets. That is what Claritin is for. anyways – back to the bath. I am not quite sure how Ben thinks we will convince the cats that getting bathed in a slimy coat of fabric softener will be fun in ANY way, but hey – you gotta have a little adventure in your marriage every now and then, right?

EXACTLY.

Meet the victims kitties.  Tin-Tin who is a pretty laid back cat, Tiberias who has already lost a tooth because he tends to go so flipping wild in “undesirable” situations, and TeaBiscuit, our 8 year old cat who has been through it all. (yes all of our pets names start with T. I have no idea why. It has just been thusly since day 1 of our marriage.)

this picture came out kind of fuzzy. Let me explain. The size of this piece of paper is pretty much a true life replica of the size of the bathroom. Have you seen the movie “Elf” where buddy is trying to take a shower? Yeah – that’s this bathroom. So Ben and I are packed in there like sardines trying to pin the kitties into the water and they are HOWLING kitty profanities at us.

The aftermath 3.8 seconds later. Serious horror flick scene with blood everywhere, soaking wet skinny little kitty bodies hanging off of body parts, lots of screaming and meowing and general chaos.

Post Bath Time Kitty Status: They are pissed.

TeaBiscuit escaped the torture and was quite proud of himself.

more aftermath.

And unfortunately that wasn’t the end.

Ben is currently sitting in the hospital hooked up to IV’s of antibiotics in an attempt to fight off the infection he got in his hand  – and my arm STILL hurts like a mo-fo where the cat was latched onto it like some kind of crazy furry Lady-Gaga inspired kitty bracelet.

he will probably be in through tomorrow, and be discharged just in time to drive up to the OTHER hospital where Kaylen will be having her surgery to have her tonsils and adenoids removed. and hopefully this stomach bug I’ve managed to pick up will be gone by then because the thought of trying to nurse the two of them while puking my brains out is really just more than I can take at the moment.

And for those of you keeping score at home – here’s the leaderboard of Health Issues at our house:

Ben – cellulitis infection due to cat bite, admitted to hospital for IV treatment

Terra – cold, puking, sore, throbbing arm from cat bite being treated at home

Kealey – HEALTHY!

Karissa – headwound at recess last week seems to be recovering, still has spine on tumor and other assorted “issues” but is functional enough!

Kaylen – surgery tomorrow morning to have tonsils and adenoids removed so we all hopefully sleep a lot better

Kendall – (i’m whispering this so her body doesnt hear me and decide to rebel) – healthy as can be expected!

2/6 ain’t bad.

sorry i’m not so funny today. Hopefully tomorrow is a better day. Well, surgery is never fun. But it IS ben’s birthday so hopefully we find a way to have a family celebration of some sort all together.

Thanks for checking in on us.

terra.