Breathing.

Somedays I have to remind myself that it’s ok that all I am doing is just breathing. It means my head is above water. I am not drowning. I am breathing, and that means i am alive. And if i’m alive, we’re all still alive.
Things are flowing along at their typical pace – some days ultra crazy and other days ultra boring and somewhere in the middle we find our rhythm and ride the waves and just keep breathing.

Kendall is improving every day. Well – in her usual way. Two steps forward, one step back. Overall – her pain is being well controlled with the addition of two “long term” medications, both in her J-tube (yay for no more IV narcs!), and her strength continues to return in amazing ways. That girl is the very definition of fierce determination (also of massive distractibility and wild banshee screaming at random times, but hey, we can’t nitpick here i guess!)

The other girls are doing well. Kealey had tried out for her school cheerleading team and did not make it and that was a really tough blow. I think maybe more for me than for her. She took it in stride. I was crushed for her. She worked SO hard on learning the routines and I tried to help her even though I was exhausted that week and I just wanted her to have something FUN and GOOD and something to look forward to…She gives up so much, you know? They all do. I just wanted her to GET something for once instead of having to give something up again. But that’s not life I guess. You want a lot of stuff and sometimes you don’t get it and you move on anyways and find something else new to look forward to and work on. She has her sights already set on how she will improve over the next year to try out again next fall. That’s my girl.
Karissa is doing well – she has become ultra loving and affectionate towards everyone since we’ve been home. She is a girl who can both read and pick up on emotions in people, even in a room full of strangers/people she doesn’t know well. It is hard sometimes to hide my emotions from her – whether that’s exhaustion or frustration or whatever – she picks up on it and she takes them on as her own, or tries to fix them somehow…She is doing pretty well in school finally with the help of her Special Ed teacher through her IEP. That is a huge relief in so many ways. Mostly I am happy for her that she doesn’t feel dejected or overwhelmed by school anymore really. It actually almost moves me to tears to think about because it has been SO hard for her the past few years, the struggles, the frustrations, the helpless feeling at knowing she needed better support but not knowing how to get the school to recognize or address it. But we are moving forward now with her support and it is so huge….
Kaylen….oh my little hurricane. Where do I start? She is doing good. She is just one of those kids IMG_7565 who will find her own way to get what she needs. She will get the attention and the love she needs one way or another – good or bad! I realized a few days ago that she is the age Kealey was when we brought Kendall home from the hospital…and I look at how much she does, how independent she is in many ways and yet how very much she still needs me. My heart breaks for her sometimes, and other times she makes ME want to break something….She also is doing so well in school and I credit her teacher with a lot of that success. She was Kaylen’s first grade teacher also and we worked very hard to ensure Kaylen stayed in her class this year because her bond with Kaylen is such a large part of Kaylen’s day to day success at coping with our somewhat chaotic family situation.  Mrs. P – I don’t thank you enough – but thank you – for all you do. 

And that’s about how that’s all going. For those of you who have been bringing us meals and sending cards…I am overwhelmed at your kindnesses and my own gratitude for you. I will never ever ever be able to write the thank you cards fast enough or respond back to emails and messages in timely manners. But if you have sent something, or done something, or brought something….it has touched my heart and given me strength. Know that. Please know that. YOU are the reason I am able to tread water and keep on keepin on. I am tearing up trying to even write this. Thank you written here seems so completely inadequate – but I hope you know how much of a difference you are making for the positive in our life. I am SO very grateful for the meals – and the love that comes into our house with every single bag of food delivered. They are the difference between me going completely over the edge of insanity and being able to know that at least one thing is set and taken care of on those days.

So there it is. A brief update of sorts. For the most part, things are under control. Supplies are ordered for the month and week, things are in place and moving forward, I am *pretty sure* that everyone has some semblance of a costume for tomorrow night for Halloween…..yeah I can’t think of anything i’m forgetting….
At least for right now!

I’m working on getting my NaBloPoMo – blog every day in November – posts all set up. I enjoy the challenge of doing it but am usually SO glad when November is done! If you aren’t already – go “like” the Terra Talking page on Facebook so you can get the notifications when the posts go up. Plus it will make me ridiculously happy to hit 1000 fans on that page (SO PAINFULLY CLOSE!!!!) Kendall’s birthday is two weeks from tomorrow which just blows my mind….this is the first year we aren’t doing some bigger thing for her birthday so i think that’s why it hasn’t quite hit me yet that it’s that close!

Anyways – now i’m rambling because i just drained a Venti mocha in about twenty minutes and i am JITTERY!!!!! YAY!!!!

I hope you are all having a beautiful week. Thank you for coming here to check on us. check on me. See what craziness i’m up to. Keep checking back. November will be chock full of it.

Peace out party people.

T-crest.

Tiger Blood.

I don’t know, ok? sometimes things just pop out of my fingers before I can stop them.

So – tiger blood it is.

Because sometimes we all just need a little fierceness in our lives. we all just need to remember our tiger blood.20140416_121322398_iOS

Exhibit A – this super fierce hat i had to make for Kaylen for her 1st grade play last week. I lost about three fingerprints from the incessant amount of hot glue it took to get those dang flowers to stick to that paper plate but BAM. There it is. FIERCE.

I had this super awesome (just pretend it was) post all written and was JUST ABOUT to hit post and my stupid computer died. And ate it. Ate my awesomeness – just like that.

I wanted to cry.

Ok not really.

but I was all the sads about it because – hey – i had finally blogged.

So i’ll try to recreate it here because I have to start somewhere.

(and yes – for the record all you Captain Obvious’s out there – i DO realize it’s been forever since I blogged. I’m trying this new thing where I don’t sit on the couch and blog all day. It’s working out pretty well for me and my butt – not so much for the blog. I’m working on a happy medium.)

But seriously – i do love hearing from so many of you who miss my amazing repartee in your day. I miss interacting with you and having so many of you know all my quirky crazinesses and having you leave random messages on my facebook asking if “x problem of the day” has gotten resolved. Or if i’ve had any windowwill sushi lately. Or whathaveyou. So – while I am building up to the great MAW re-enactment posts – here’s a quick rundown of some FAQ’s for you all. And if you really truly love me you better figure out a way to actually INTERACT with me – or i will feel so horrible i will retreat into my cave of non-bloggyness again. Leave a comment, on here, on facebook, write me a message in the sky, send me a carrier pigeon, send me an amazon droid – YES DO THAT!!!!! ONE MILLION INTERWEBS DOLLARS FOR THE FIRST PERSON TO DO THAT – bring me food or cokes  or in the words of Kim Possible : Call me, beep me, if you wanna reach me.

You feel me??? We understand each other? Good.

Oh and miss C – my cookie messiah – you’re excused. those easter cookies were the bomb dot com. As always. Thank you love you how can i repay you?

I should probably not have consumed all that Easter candy before sitting down to write this….

But without further ado, I present – Answers to your….

 

FREQUENTLY ASKED QUESTIONS

 

1.) Yes we are all doing ok. No one has been hospitalized or even needed urgent care lately. Knock on wood, throw salt, hug a black cat, thank the baby cheebus – but we are all mostly healthy and very much alive. For the vast majority of you, this is enough to know. For those of you closest to me, you read between the lines and know that no news is usually good news, but sometimes no news means i just can’t/won’t put it all into words because i hate sounding like i’m complaining. Thank you for everyone who asks though – because I know it is because you care. 

2.) Make a Wish was Bey-Awesome. You know I’m rarely at a loss for words – but it is going to be ultra hard to put into words the amazingness that was this trip. I want to capture it all – the good, the bad, the ugly, the scary, the frustrations, the elation… I will get to it. Soon. I promise. Maybe even this week if i get enough positive ego strokes from your reciprocal interaction with me on all things social media related.

20140412_162437505_iOS3.) Karissa’s MRI did come back with no growth on her tumor – so that is GREAT news. Her pain is still there although it is more intermittent in nature now, and she is learning to handle it better so she can continue to breathe through the bad times. The kid is a fricking rock. I love her.

4.) Kendall’s gut is still craptapular. Feeds are going – not spectacularly so – but we keep on keepin on, keep hoping, keep praying. It breaks my heart to press “run” on the pump knowing that it is causing her so much pain….and yet the alternative is equally as heart breaking. So I do it anyways. our whole existence together – kendall and I – has been me subjecting her to painful things in the hopes that it gives her a better shot at life. It is messed up and warped and I hate it sometimes so I just don’t address it. Her gut sucks at working as a gut and there is very likely nothing on this side of heaven we can do to fix that. she also handles the pain like a champ though, which makes my hard job a little bit easier.

5.) We survived the “sleep” study last week. The chair for me to sleep in did not recline all the way, and Kendall slept with 2984 wires glued onto her head, throat and chest so – sleep was not in abundance for either of us. But hopefully her doctor was able to get the information he needed to help keep her lungs as healthy as possible. For those who don’t know or understand – ever since her lungs took their massive hits last summer when she was so sick, she has these episodes at night where she just “forgets” to breathe. Now, everyone likely does this at some point, maybe not every night, but it happens. It’s called apnea. It’s what happens when we wake ourselves up snoring or gasping for breath. The problem with kendall is that it is happening more on one side than the other (the side that had the most injury to it last May), and when it happens it is a pretty prolonged episode that is giving me gray hairs as i have to go tearing into her room at night, sit her up, wake her up, make her breathe again. So we don’t know if this is just her new baseline and she is capable of handling these episodes, sustaining them in the long run – or if we need to add pressure support (Bipap or Cpap) to her nightly oxygen. We should get a report from her doctor sometime this coming week or early next week. I’m not too worried about it – but it is good to have an idea of what her typical night of sleep is actually yielding as it may help us make better decisions about some of her daytime issues also.

20140419_160910802_iOS

6.)I don’t remember what 6 was – I just know that in my original post there were six things….i’ll think of it later i’m sure.

I’m going to post this now before I lose it again.

If you have other FAQ’s that  I did not answer here – maybe it was number 6? – let me know and I will try to aggregate answers.

I hope you are all enjoying a beautiful Sunday afternoon with your family and friends!

Love and hugs~

 

Terra.

i hope you dance.

oh my baby boogerton…

it breaks my heart to see you in pain these last few days. You – my giggly, happy-go-lucky cloud-gathering princess ballerina who lives in a world filled with puppies and rainbows – you spend most of your free time these past couple weeks hunched over on the couch. IMG_3646

the very first time you came up to me and showed me where and how you were hurting – my breath caught. Two years ago in the neurosurgeons office when we discovered the “tumor” on your spine via MRI while looking for a much bigger problem, he told me that if you were ever going to experience symptoms, you would feel them like *this* – swiping across his lower ribcage. And that is exactly how you came to me a few weeks ago. I hoped it was just a growing pain or a cramp or anything easily explainable that would resolve in a day or so. And it seemed like maybe it eased up. I told myself it was gone. But then it came back worse. And continued to get worse.

and you danced your heart out on that stage last weekend – three long days of dancing and booty-popping and fuete-ing across that stage. And even though you would come offstage with that pained look in your eyes, you put on your next costume and got right back at it. Because that’s just who you are. You love to dance, you live to dance. And I tried so very hard to ignore how much you were hurting. Because I didn’t want to think of what it might mean.

Because what it might mean is that this tumor is growing. And I’ve tried to explain it to you in the simplest, least scary terms I can. You have a small growth that is in the nerve pathways of your spine. It is a growth that is prone to rapid acceleration, even if it remains dormant for years. We had no way of knowing two years ago if it would ever grow, if it would shrink away, or if it would just remain there, in the way but not causing any problems for the rest of your life. We were supposed to get MRI’s every 6 months to monitor the growth. Which, we did keep up with pretty well until your little sister decided to live in the hospital last summer, and we missed an appointment and I thought “ok my hands are full enough of medical stuff and this will probably not ever be anything to worry about for K2”. And oh how i hope those words don’t come back to haunt me. They already have.

I know you are scared baby girl.

20140216_143222026_iOS

Tomorrow morning we will have that MRI so your doctor can get a good look at what is going on throughout the area, and more specifically see if that tumor is growing and causing issues.  We have talked about some of the possibilities and i’ve tried so hard to keep my own game face on for you.

You are not looking forward to tomorrow morning, and truthfully neither am i. You never do well with anesthesia and it makes you so sick for a couple days afterwards. What a crappy way to start spring break! But at least we will have it done, and your doctor can hopefully give us an all clear before we leave for Disney.

You are so brave my little boog. I will be brave for you, as they give you the medicine to make you sleepy and they wheel you away from me. I am used to this – as much as a mommy can get used to such a thing – for your sister. We have our routine. i hand her over to people who know her and who have my trust. Tomorrow I will hand you over to strangers. We will probably get to the hospital and get to talk to peds anesthesia minutes before your time and they will literally freak out over your sisters anesthesia history and they will realize that someone should have called me three days ago to discuss this craziness. And this will make you even more nervous so I have to remember to talk to them in the hallway.  But off you will go and I will sit and pray the whole time, willing them to find nothing, or maybe a little something that would explain the pain – but nothing really serious. No tumor growth.

Because I cannot think about that part. The part where if it IS this tumor and it IS growing and you have to have surgery, how that would affect you. It would mean no dance for a few weeks – during the busiest part of the season. It would devastate you. It would be very hard for me too. So I won’t think about that. We won’t think about that.  We will focus on positive things and easy answers and breathing a sigh of relief when we get the doctors report next week.  We will not think about you not being able to dance – you who dance and leap your way through the house, the walk to the bus, school, whatever store we are in.

You dance.

You dance anywhere and everywhere and you dance your heart out.IMG_0149

So tomorrow when you go to those crazy anesthesia induced dream places – I hope you dance. I hope you see yourself like I see you – my beautiful graceful amazing little dancer.

And when you wake up – I hope you dance too.

You are amazing and i am so proud of you and i love you so very much.

My baby boogerton – if you get the choice to sit it out or dance –

I hope you dance.

 

love,

mommy.

it’s always worth it.

The past two days I have been consumed with IEP planning meetings. For those unfamiliar with the term “IEP” – basically it means special educational services your child needs to receive from their school. In case you’re wondering, no the school does not offer these services willingly. IEP’s usually involve a lot of heartache on both sides of the table – the school’s and the parents’ – because it’s hard to say the things they have to say and it’s hard to hear the things that have to be heard.

20130417_192141000_iOS They aren’t always all bad. Some of my friends have had horrible experiences, and some have sailed through their meetings with nothing but smiles. For me, my IEP’s for Kendall have always been more on the good/easy side than the heartache side. I see her struggles every day, and am able to rejoice in every single milestone she hits, knowing how amazing they each are. Hearing that she is 1-2 years delayed in multiple areas rolls off my back. Her team is mostly scared of her medical issues so things aren’t a “fight” per se in her IEP. She needs to be bussed in her wheelchair? sure thing. She needs a 1-1 nurse every day? You betcha. Anything else we can do to make her educational transition smooth? For the most part, things have just rolled along for kendall’s IEP. Sure there is a part of me that has to emotionally recover after every one, but for the most part, they are just a part of life with Kendall. Her IEP team has been in place for almost 3 years now, and I feel like they truly understand where my true GOALS for Kendall lie – and that isn’t about whether she can button three buttons or jump forward 9 inches – it is about having her experience life as normal as possible, It’s about doing whatever we can to ensure that she has as “regular” of a childhood school experience, on as many days as possible.

While Kendall has had an IEP her entire “school” experience (once she transitioned out of Early Intervention and into the school district at age 3), Karissa is my other child with educational challenges. Hers has been a very different path. Karissa was also in Early Intervention, and transitioned into the school district at age 3, related to speech delays. She has struggled from Kindergarten with what I have always perceived to be “learning disabilities”, but I have been told repeatedly that her issues would “resolve themselves” by the end of whatever grade level she was in. I have talked about her issues and struggles before on the blog, and if you know me in real life you’ve heard me ranting about it plenty!

Karissa has had a “504” plan in place for a couple years now – basically it is some smaller accommodations the school is willing to make so that she can have her educational needs met in spite of what may be medically related issues. For Karissa at the time we put this into place, it meant that she needed to have access to an extra snack, her water bottle and extra potty breaks. We thought she wasnt able to learn because she was too busy fighting what were at the time nearly back-to-back UTI’s. It was a good thought. She unfortunately has outgrown those type of accommodations and has shown a marked decrease in her academic skills this past school year.

Around Thanksgiving we started the process to add some interventions to Karissa’s school day to try to improve her functioning with regard especially to reading and writing, areas she is definitely struggling in. Today we finally had a meeting to discuss the team’s findings as they have been doing some in-depth testing as well as to discuss Karissa’s “Response to Interventions”.

I was nervous about today’s meeting. I know that Karissa CAN look like she’s compensating. And she Is able to coast pretty well. She has perfected the duck swim as I call it – she looks calm on the surface but underneath the water she is paddling furiously trying to stay afloat. It breaks my heart when I see how hard she works on her school stuff, when I can see that she isn’t “getting” the info and I have no idea how to open up the world of words to her. It frustrates me that I know her teachers can see the disconnect but they feel like their hands are tied as well. As much as I don’t WANT Karissa to need special education, in my heart I knew that realistically, it would be the best thing for her. But then I wasn’t sure that the school would be WILLING to admit that she had a problem worthy of receiving help!

It was a meeting i was not looking forward to.

And I’m still not sure how I feel about it, after the fact.

At the end of the day, the team decided that Karissa qualified for an IEP, receiving special education services for a portion of her day, but remaining in general education (her regular classroom) for most of the day. Her SpEd services will include a lot of accommodations aimed at making it easier for Karissa to function throughout her day by not having to rely so much on her OWN reading skills – she will have someone to help read things to her, go over them in more depth, and make sure that she is truly grasping the concept before testing her on it. It’s all good stuff. It is stuff that I would not have even been able to verbalize if they had asked me for a list. I am actually excited in a weird way to see how much more this will help her. Her testing even shows that she has the capacity for being a near genius – she is truly brilliant. But her brilliance is trapped behind a barrage of letters that don’t make sense to her.
It was hard to see the testing results. It was hard to bite my tongue through so many parts of that meeting. It was hard to not hulk smash the conference table when one of the team members admitted that “if we used a term like dyslexia, karissa’s results would be consistent with that diagnosis” (I have been saying she seems dyslexic since she was in preschool. PRESCHOOL, people.) But apparently we don’t believe in dyslexia anymore. So Karissa’s issues are left to float around on their own in “reading disorder, not specified”.

It was VERY hard to stay seated when the question was asked “is it worthwhile to pursue help for a child like Karissa”? (and really, the context under which the question was asked made it not sound as harsh as it may sound to read it out of context like this.)

But what my mommy heart HEARD at that moment, was “Is karissa worth our time and effort?”

And it was all i could do to keep from standing up and screaming – of course she’s worth it! My babies are worth every second of your time!

Luckily – that was the conclusion they also came to.

So here we go. On Monday, Karissa will start receiving specialized individualized education to address her major learning deficits. My hope is that this journey helps her learn to unlock and use all that amazingness in her brain. I hope this helps her get her love of school and all things bright and fluffy back. Right now, she’s just exhausted when it comes to school things.

This will not be an easy journey I am sure. It already is not easy. My emotions are all over the board tonight as I try to process through the meetings for both Kendall, where we discussed that her “school career” may not be that of a “healthy” child – that she in fact may not make it to high school – and for Karissa’s, where I heard the information that I have known all along said out loud. Managing the school system for now two children with IEP’s will not be easy.

But this much I know –

It will ALWAYS be worth it. Every meeting, every step, every milestone fought for and met – always worth it.

Worth the tears and the triumphs, worth the rescheduling and waiting, worth it all.

Always.

 

terra.

The Others – My cloud-gatherer.

 IMG_2247 when I am asked how I do it, how do I split my time up between all the needs of all my family members, and  how do I manage to be mommy to the other girls while devoting so much of my attention to Kendall, the one I worry about the least is Karissa. She is seriously the world’s most easygoing kid. Always has been. She embodies sweetness itself. She needs attention and love and sensory input like no one I’ve ever known, but she soaks it up like a sponge. She doesn’t need to have a long conversation with you, she just needs to sit next to you and literally ABSORB you, the essence of you. That’s all she asks. Just sit by her.

She can be the loudest one in the house when she’s being tickled or when kealey has pushed one too many of her buttons (which happens with alarming regularity), but for the most part, she’s just my happy quiet kid along for whatever ride we may be on that day. IMG_0130

What you may not know about Karissa is that she actually had a lot of health issues her first few years – she had a near total loss of hearing in both ears, was developmentally delayed, had nonstop ear infections and horrid UTI’s, multiple head injuries (because she inherited her mother’s superklutz genes) – but she was still just a super happy smiley baby!

Even now, as she wears bifocals to see, has an expander appliance in her mouth slowly widening her jaw every day, wears a Hannibal-Lecteresque headgear every night, struggles to read and comprehend words that “squiggle”, and is usually one big bruise from head to toe, you will rarely see her without a smile on her face.
She makes my job easy by not requiring much of me. She loves unconditionally and asks for nothing in return, except a few hugs and all your love.

IMG_3646She is a beautiful dancer and always has been. This probably came because when she was little and couldn’t really “hear” the TV, she “felt” the TV. She would put her hand on the speakers in the front of the TV, or put her ear on the ground near the TV. And now if there is any music on, she is dancing to it.  She is dancing this year with girls 3-4 years older than she is. It is so tough for her to keep up – but she’s doing it! She is struggling in her classes because of an unidentified learning disability (something like dyslexia but the school doesn’t recognize that as a diagnosis so we feel lost as to how to help her) – but she’s doing it! She gets frustrated at herself, sure, but she just keeps going.

I don’t know how to tell you about Karissa. She’s just awesome. She is amazing and loving and I’m so scared that she will get into a scary van with any man offering her candy because she has ZERO common sense and she loves and trusts everyone – but she’s all mine.  She sometimes comes and sneaks into bed with me on nights when Ben is traveling and it’s just because she needs to be near me. She has the hugest heart and the craziest imagination. I wrote this story on facebook last year in December and it just sums up Karissa – her loving heart, her concern for others, her all-around awesomeness:

Overflowing with Christmas Spirit right now. We were walking into WalMart to get a few groceries, and karissa said “does that lady who rings the bell stay warm?” Very concerned for the Salvation Army bell ringer. We stopped to ask her how she was and she said her feet were freezing, she had been out there for 8 hours. Karissa asked in her small voice if we had enough money to get her some warm fuzzy boots when we were inside the doors. I wanted to say no- I need to buy Christmas for my own babies, let alone get food for them, and I have been wanting new slippers for the hospital stays myself. A million reasons to be selfish. But I told her we could get some. Karissa just about broke into a run towards the shoe section, picked out some nice warm fuzzy boots for the lady and hurried us through our shopping. On our way out she handed the lady the bag with the shoes in it and said “I just want you to have warm feet and have a Merry Christmas”. Somedays- I screw everything up as a mom. And somedays I thank God that I must be doing something right.

I don’t know how I got so lucky with this one, but I’m so glad I did.

20131031_153133000_iOS

Love you boogerton. Just keep swimming.

love,

 

mommy.

My girls.

you thought i’d miss a day, didn’t you? This is technically going to be “yesterday’s” post, even though it will show up today, and then today’s post will show up LATER today. confused yet? good. we all operate better under that assumption of craziness.
Yesterday I was just so busy…

One of the prompts for NaBloPoMo is to write about “a day in my life”….That would pretty much be a book so i’ll spare you the gory/overwhelming/boring/crazy details and just say – I was busy doing all the things I normally do to keep Atkinson General Faux-Hospital running and then I had to add in Parent Teacher conferences.
Kendall’s 15 minute conference turned into nearly two hours of IEP Re-evaluation planning with part of her awesome team from her school. But in spite of the fact that it took so long, it was awesome to feel like my concerns for her were being truly heard, and I think our IEP progress for Kendall will be so much smoother thanks to all that brainstorming.
Then we ran to therapy, then home, then I had to run and pick up the girls from my friends’ house where they had all gone because we were at therapy when they got out (early dismissal due to conferences), then home to get dance stuff together, then to dance, then to conferences. Then dinner, Kendall troubleshooting, cleanup, bedtime. Ehh – I guess that wasn’t so bad.
Anyways – we all survived.

Conferences for the middle two were a split. Karissa is currently in the middle of a re-evaluation for services at her school due to a MAJOR gap in her tested intelligence/cognitive level, and how she is performing at school (her grades). She is just such a non-verbal learner – symbols, patterns, numbers, choreography, movement – these things are how Karissa interprets the world around her. Everything is a dance. And words interrupt that dance. In her words “the letters squiggle”. She wears bifocals (progressive lenses), made in an effort to help her vision be as good as it can be for both near and far sight. We have identified a visual processing disorder (her brain doesn’t always interpret two-dimensional information – words on a piece of paper for instance – as one cohesive image), an auditory processing disorder (she cannot differentiate background noise from a dominant noise – for instance, if a teacher is talking while there is ANY kind of other noise going on in the classroom, papers rustling, pencils scratching, noses sniffing, etc.), and we believe there is a possible element of an ADHD like process at play too (executive functioning, the ability to prioritize and order tasks into a list to be done in order to complete something like homework, or getting dressed in the morning, etc).
All of this is making it very difficult for Karissa to perform to her best in a typical classroom setting. She is in the honors program at her school, but is quickly falling farther and farther behind compared to her peers because….well – we don’t know why. I am hopeful, but not optimistic, that her school is going to be able to help us identify WHY she is failing at school all of a sudden. I hope that someone is able to help turn the lightbulb back on in her mind and help us unlock all of her amazing mysteries residing in that crazy, cloud-filled, puppy-riddled world in her mind. I know there is SOMETHING, some piece of info out there, that we will be able to say – “Ah-ha! this is how we help Karissa! THIS is her problem, and THIS is the solution!”
To that end, a child with a less than stellar report card, a frustrated teacher overwhelmed with how to keep a child like Karissa at grade level, and my own worries for my child led to a less than productive conference for her. But still – I’m so proud of her for fighting through all that is stacked against her, for plugging away at homework that “squiggles”, for not letting any of her issues get her down.  she’s awesome.

Kaylen, however, the one i WAS worried about – sure her conference would be filled with stories of how she destroyed this, that or the other thing in her classroom, or other tales of the terror she can bring on at home – Blew me away.
Her teacher told us a story at the beginning of her conference that left me with tears in my eyes.
They were having a special day where all the students got to eat lunch in the classroom with their teacher. (I’m not sure how or why such a thing would be a “reward” for the teacher, God bless her, she’s an amazing person…I digress.) anyways – there was one little boy in the class who was sitting off on his own. My beautiful little social butterfly got up from her group of friends, took her lunch, and went and plopped herself down next to this boy. She told Mrs. Pullos – “I think he is lonely and needs someone to sit by him.”

Would I have done that? Would you?

Oh to be more like my beautiful Hurricane Kaylen…
(Later when I asked her about that situation, she said “yeah i think maybe he didn’t WANT anyone to sit by him. But it’s ok. I sat by him anyways.” That’s my girl!)

And then today was Kealey’s conference. Her school does this super trendy “self-directed” conference thing. It actually worked out very well for us – Kealey is such a good kid and it was so great to see her really digging into her work to look for areas where she excelled and areas where she could improve. Every single one of her teachers came to tell us that they were so impressed with her work ethic, her compassion for others, and her amazing persistence in doing her very best, all the time, no matter what. And my girl who works so so so hard to be my little helper, my mini-me, help me keep everything together when Ben is out of town – this girl on whose shoulders rests so much responsiblity, and grace, and grown-up-ness – this girl made the High Honor Roll.  I sat there listening to her read her self-assessments to us, looking at the beautiful young lady she is becoming – and I could not help but cry, just a little bit, just to myself.  How did we get here? How did my little Kealey Grace, my constant companion for all these years, the wriggly little crying baby who i brought home scared to death I was going to break her almost 12 years ago – how did that little baby grow into this vision of loveliness? Where did that time go?

So that is what I wanted to tell you about My Girls.

They are amazing and I love them and I am so so so proud of them. For all that I do wrong – THEY are what I do right. By the grace of God, my own amazing examples of parenting, a village of friends and family around to support us – by all of those things – my girls are amazing.

IMG_0005

Terra.

waiting.

I feel like that’s all I do some days.

Wait for energy to descend upon me like a magical glove from heaven. Wait for the fax machine to ring announcing Kendall’s labs are done. Waiting for a doctor to call back with a plan. Waiting for Kendall to feel better. Waiting for a break to come.

Yesterday we were waiting for Kendall’s lab results. They should have come in around noon. They were dropped off at the lab around 9:45 am and ordered “stat”. We knew we needed the info to make an informed decision about what or where or how to help Kendall. See, she’s been “anemic” for a while now. Most chronically ill children/kids on TPN are anemic to some degree. It’s just par for the course. Kendall’s body has mostly learned to adapt to this anemia, and she has her own set of “normal” ranges. In December she all of a sudden started lowering that range – likely due to all the infections she fought last fall, as well as the blood thinning medication she was on for her DVT (blood clot in her chest). She was actually kind of iffy for whether or not she would tolerate Disney without dropping her counts further – but by the grace of God, she managed to stay stable that whole time. After we returned from Disney though, she did start to slowly drop again.

My belief is that her hospital stay in early february with the tachycardia was her body’s way of trying to compensate for the lowered counts – except that her counts weren’t super low at that time. But her body eventually found it’s rhythm as it compensated and adjusted to a lower blood count than it’s previous low normal. After last week’s hospital stay, her numbers had dropped even further, but symptom-wise, she was still hanging in there.  Anemia symptoms include things like an elevated (fast) heart rate, paleness, shortness of breath, tiredness/increased sleeping, grumpiness – you know – pretty much standard preschooler behavior! Kendall “acted” more anemic in early february, but her numbers didn’t show it. Now her numbers show it – but her body is compensating.

the question becomes “compensating at what cost”? How long can her body last at these lowered numbers? (last time her hemoglobin was this low she was getting a transfusion – but she had also just been pretty sick, and was younger/had less reserves than she does now). How hard is her heart working right now to try to keep oxygenated blood flowing to all the important organs? How is her body deciding what is important and what isn’t? Will she just crash suddenly or will she continue to slowly decrease until someone decides enough is enough? I don’t know the answers to these questions. That’s why I anxiously wait for her labs to come, to tell me via some numbers on a page how her body is handling the stress.

At some point, her team in milwaukee will have to decide that the enteral iron (liquid iron we give into her gut, where iron is absorbed in our bodies. Iron is the building blocks of red blood cells, red blood cells indicate your body’s level of anemia or not.) is not helping the matter, and decide whether it is time to order a blood transfusion for Kendall, or start doing IV iron infusions. Transfusions obviously come with their own set of risks, but would be “an easy fix” for Kendall’s issues right now. Iron Infusions can cause some crazy reactions in the body, because you are forcing iron into the bloodstream when it is typically a process that your gut does for you. You have to have your first one or two iron infusions (typically) in a hospital setting/infusion clinic where you can be monitored for reactions and treated appropriately – but thereafter there is some “proof” that adding a small amount of iron to the TPN (Kendall’s IV nutrition) would help boost the ferritin levels enough that the bone marrow could continue producing adequate levels of hemoglobin on it’s own, without the need for transfusion.

I don’t know what is the right answer for Kendall right now – that’s why I am depending on, WAITING on, her team in Milwaukee (GI, complex care, hematology) to make a decision about what we do for Kendall. Apparently, however, as I’ve been assuming they were seeing all of these drops over the past couple weeks that I have been seeing (they get the same labs faxed to them every other week) – they have NOT actually been seeing them. They have a new records system in place up there, and as I just found out last night – labs from outside hospitals are taking weeks to MONTHS to be entered into the system. And since I am not the mom to be calling them week after week to ask for help, they have assumed “no news is good news”.  when I found this information out, I was disheartened. Frustrated. Disappointed. Sad for my baby girl, who has continued to deal with more and more crappiness every week as she drops lower and lower, waiting for her doctors to say enough is enough let’s help her. My faith has been blown. I know it’s no one’s “fault” – but still – I feel like I found out that when I thought I was swimming towards a rescue vessel. it was just an illusion, and I’m left treading water in the ocean keeping kendall afloat all on my own.

It is some days so very hard to play doctor at home. As much as I joke about her room being a hospital room – the truth is, I just don’t know some days. Most days. While I want to assume that for the most part things are going ok in her body – she can pull some crazy stuff. It leaves me (and her nurses) all scratching our heads going – is this autonomic and will straighten itself out? Is this because her kidneys aren’t functioning? Is this her heart? Is this her anemia? Is this all of the above? Is it time to take her in? Let her keep riding it out? It is getting old. and hard. and tiring. For the most part – you see pictures of Kendall smiling. And for the most part, Kendall is always smiling. But she’s tired. Her body is tired. It is working very very hard to find any kind of balance. She takes four hour naps most days, and some days would sleep even longer than that if we let her. She is wearing oxygen every time she goes to bed – nap and night time – in an effort to ease the work her heart is doing. She is complaining more of pain, and dizziness and just overall “hurting”. She asks me “when i feel better momma? I don’t know wrong wiff me.” It just breaks my mommy heart to see her like this – trying bravely to keep her smile on, to keep pushing on through life, because it’s all she knows how to do. keep moving forward.

But I want it to be fixed. I want to take her to milwaukee and show them my baby who is so pale she could make a vampire seem nicely tanned and show them the bruises up and down her legs and arms and make them watch her walk holding onto walls so she doesn’t fall down from being “soooo dizzzzyyyy momma!!!!” and show them how she used to get up off the couch and dance with her sisters and now she lasts for about ten seconds before she crawls back up on the couch and just watches them. I don’t let myself stop and see these things because they hurt too bad to see – so we all keep moving forward and acting as if everything is ok and we’ll all be ok and everything will eventually fix itself if we all just keep moving forward.

I’m so tired though.

Tired of being the only one here seeing this, making decisions on my own, being the enforcer on my own, keeping a running log of lab numbers and symptoms and differential diagnoses for every crazy thing kendall does in my head on my own. Tired of being the one whined to, cried to, needing comforted because the other three are sick too, and have problems too, and don’t understand this week’s multiplication homework and need this paper signed or that dance costume sewed or they don’t like what I made for dinner. Which, admittedly, is not anything great.  But I’m just so tired. I’m tired beyond physical sleep. I’m emotionally tired, mentally tired, spiritually tired.

I yelled at Karissa last nite. And I mean YELLED. I was that mom outside of Target berating her daughter for dropping ice cream. you hear me? i yelled at my child because she dropped my ice cream. My one treat – one good thing to look forward to on an otherwise crappy day – and karissa dropped it all over the sidewalk because she was trying to hop from rock to rock and wasn’t paying attention. I made my baby boog cry the whole way home because I crushed her spirit. Because my spirit feels crushed. I stayed awake thinking about this for hours. I went in and laid with her and told her how much I loved her and I was sorry but I cannot take back those words or that tone of my voice. I have no sense of who I am anymore really.  I am just a person who gets her kids from point A to point B, wears the same sweatpants every day, watches her child get sicker every day, feels more and more useless every day.

This weekend Ben is going to help his mom move from Texas to our home. I am glad the girls will be able to see their Nana, will be glad for the extra help every day, glad we can help her out in this way. We have a space in the basement that we were able to turn into a bedroom of sorts for her. I wish we had a real bedroom for her. I wonder how this will change the logistics and dynamics of our weeks. I already have had to give up my home, my alone time, to share our space with the nurses who help keep Kendall at home every week. I wonder how much more that will change adding another adult full time here. I think “will i ever find myself again, in the chaos?” People try to say the right things and do the right things and we could not survive without those good friends. I’m rambling because I am finding it hard to get my feelings out of my fingertips right now.

Somewhere inside is me. The me I used to be. The me that used to be a good mom, a good wife, a good person. I want to find her again. I’m waiting to figure out how.

But I think it starts with this. A verse I read the other night after seeing my brother’s facebook post instructing us to do so.

Psalm 29 – “God gives his people strength. God gives his people peace.”

And so I wait more. For strength and peace to come.

And i know they will.

I just have to wait.

 

t.

Bring Your own cheese.

Cause we got a whole lotta whining about to get down in here.

First of all – I feel horrible. Let me just whine about my sinuses, ears, eyes, nose, throat and head for a few seconds. I went to bed last night feeling ok, woke up this morning feeling like a truck ran me over. That truck may or may not have been kaylen crawling into bed with me and then hacking up her germs on me all night long. Ben is once again gone on a week long business trip, so there’s no rest for the weary here. (Yes this is all just purely whine, don’t judge!)

The girls came home from school yesterday and kaylen was in tears from how bad she felt, and karissa was about a step and a half behind that. Loaded everyone up on vitamin C and ibuprofen, and they had definitely perked up a little bit. (Oh and a CFA milkshake. Because it was Milkshake Monday, duh. And CFA milkshakes fix a LOT of problems.) Karissa never really had a fever, and seemed improved this morning, so I sent her off to school with Kealey. I’m still debating over Kaylen – who hasn’t had a fever through the ibuprofen so far, and is looking ok. Thinking I still won’t risk it – but not sure I can convince her to lay down with me later and take a nap (which is really all I feel like doing!)

IMG_0104

Kendall made it up and out the door to school with her nurse – but complained all morning about her throat (which isnt actually her throat, but usually more often means that she’s very nauseated, because she has this gaggy little retch-cough that she does with it). She actually asked me this morning in her groggy little voice “mommy, when I gonna feel better? I just want to feel better!”

Stab my heart.

I know she has felt like absolute poop for a few weeks now – between being sick with regular winter stuff, the raging UTI from a couple weeks ago, and being super anemic (low blood counts to overgeneralize it), i cannot fathom how the kid even wants to get out of bed in the morning.  But that’s Kendall. That’s why she’s my hero. I can personally barely function with a touch of a virus, but there she is smiling, asking to go downstairs and see sissies, and learning how to voice request “little mermaid disney world ride” on YouTube. She seriously watches this video of the Little Mermaid ride at WDW over and over and over again. Freaks out over Ursula every. single. time. and wants me to explain why King Triton is holding a triton at the end every. single. time.

(Don’t worry – Cinderella is still the fave – but Belle and Ariel are starting to creep in. Variety is sometimes nice!)

Other than that – we’ve just been here. Surviving. Getting some snow (FINALLY!!!!) I’m a huge fan of a good old fashioned snowstorm. When my family is all home together. We haven’t had any all winter –then got two good ones in one week! In March no less…

I feel like my weeks as of late have been full of just “blah”… the dreariness of doing the same thing over and over and over again – always cold, always feeling just slightly under the weather, always exhausted, always running around with kids or cleaning up after kids or chasing down doctors for kids.  There are always more bills to be paid (just got another stack of medical bills in the mail today – not helping my mood at all!), more things to clean up, more laundry piling up – and never enough me to go around to everything. (I’m purely just whining at this point – i know everyone goes through this, our situation is not unique, i’m not looking for sympathy – just purely venting!) i am tired of feeling tired and worn down and like i will never get out of this hole I feel stuck in. Tired of the gray hairs that cropped up overnight during last week’s logitical nightmare with the party/hospital stay craziness. Tired of making excuses for my own poor eating/health habits. Tired of not having nearly enough energy to make any kind of changes to the above.

thank God for a few very good friends who can deal with my blahness and whininess and pull me out of my funk for a few hours at least. Thank God for the hundreds(? – it seemed like it was that many!) of you who helped make Kealey’s party a success. I seriously could not have done it without you! (And also I have bags and video games and tupperwares that need to be returned! contact me to claim yours today!) You are all the reason I have not fully resorted to rocking in the corner sucking my thumb. Seriously. I cannot even begin to tell you thanks – your notes, messages, help with everything i’ve needed help with, prayers – they all help me function.

Karissa had her followup ortho appointment yesterday – the one where we found out how many thousands of dollars her jacked up teeth are going to cost us. She is going to need three phases of treatment. The first involves an expander. I can hardly type or think of that word without cringing. I’m sure some of you have dealt with these nastified things before. I personally do not know how i am going to do it. supposedly we are supposed to adjust it every night? Hers is going to be more like every weekend, when Ben is home to do it. I can drop an NG, drain intestinal contents, catheterize, and beat mucus out of lungs. But I draw the line at twisting a metal appliance in my child’s mouth meant to stretch her bones out. Nope. Not gonna happen. I about fell off my chair with how bad i was cringing at the doctors description of all this. I do not do teeth. I don’t do them in myself and i certainly don’t feel like subjecting my child to that torture. You know that part in Princess Bride where they hook Wesley up to the sucking machine? That’s how i feel about this torture device they want to put in Karissa’s mouth. She will have to wear it with a facemask at night for at least one year. She has to have two baby teeth yanked, neither of which has an adult tooth behind it. (We share this dental disease – missing adult teeth. I’m just smart and never went to the dentist to have them tell me my teeth were in the wrong place.) The tech was like “this isn’t painful, it’s just pressure”. I was all “that’s exactly what childbirth is, but they still give you an epidural if you cry hard enough for one.”

So we get to start THAT fun merry-go-round of MORE appointments some time next month.

And last but not least – Kendall’s anemia. Kendall has had “anemia” her whole life – in the sense that her hemoglobin and hematocrit (measurements of the red blood cells in your blood, the ones that carry oxygen throughout your body) are always low (below the limits that the lab considers a “normal” range for someone Kendall’s age). She has needed transfusions before, but typically only when she is septic and her body is chewing through blood faster than she can produce it. You remember her early February hospitalization? For the high heartrates we could not control? That was due to the anemia. Except at that point, her lab numbers were still in the “too high for a transfusion” range. Now that she’s dropped a couple points past THAT low, her body is not giving us the red flags that it had been – it is yet another kendallism. She is obviously not feeling very good at all (totally expected with her crappy counts), and is very tired most of the time. Her body would be doing TONS better with a blood transfusion right now – but unless we go camp out at the hospital, there’s no good way to do this. She had dropped again last week, but held on all weekend (as far as her vitals go – her body is in a hugely compensatory mode – but it IS compensating, which is a good thing). Tomorrow morning we will pull more labs and hopefully have the results by the afternoon so we can make a decision either way.

We know she has a mixture of iron-deficient anemia (iron/ferritin being the building blocks for red blood cells, and most of us get iron via the foods we eat as they are broken down in our stomachs. Not having a reliable stomach-breaking-down-ability combined with not eating a whole lot of anything of substance doesn’t make for a very high ferritin count), along with anemia of chronic disease. She has been receiving oral iron supplementation (it goes into her tubes) for a couple months now – but it is very hard on her GI tract and we have had to stop it in the past due to it causing GI bleeds. Her body HAS been doing a good job of keeping her iron stores up, keeping her counts up, compensating in every way possible. But it’s getting worn out now. I do believe that it CAN bring itself back up – but it’s going to need a boost of some kind. It is unlikely to come up on it’s own anytime soon, which leads us to needing to do an iron infusion (IV iron) as a very likely solution. Some people rely on iron infusions for a few months/years – Kendall may only need one or two to give her that boost back up that she needs. That’s my best case scenario hope at least.
I am not sure what the timing of such a thing would be. Iron Infusions need to be done at the hospital until there is proof that they are well tolerated. Ben is in some warm southern state this week, and will be leaving a few hours after he gets home again to drive to Texas to help his mom move up here. Leaving me trying to juggle kids and schedules again if we need to drive up north (why does he get to go south to warmth and I get to go north to coldness???) Anyways – let’s just all hope and pray and sing kum-ba-yah in an effort to ignore the possibility that we might need to go up there anytime soon.

daily attitude Ok I think that is about as much whining as i can stand from myself for one day.
Sorry i’ve been gone for so long. I really do miss blogging when i go on these hiatuses –b ut some days i just don’t know how to say what i’m feeling, without just absolutely hating how whiney it all sounds. Warm weather is coming though right? And at the end of the day, it’s all about the CHOICE to change your attitude, and change your life. I know I’ve got a lot of changing to do.
Hopefully there’s some great news next time I update!

Thank you again, all of you –for reading, messaging, commenting, praying – in general – thanks for being my friend.

Love and hugs~

T.

Send More Kleenex.

Wasn’t I just whining about being sick last week? Well, it got even awesomer. Now I have some kind of head cold from hades and can’t breathe very well. Everything hurts. Just everything. I can’t even focus on all the crap I have to get done this week because there’s so much snot clogging up my brain.
Karissa is supposed to have her “records” appointment at the orthodontist today. Yes she is only 8. But she, like me, is missing some of her adult teeth, and from the bike accident she had when she was 5 and lost all her front teeth, they are all growing in catty-wompus. If you know me, you know I don’t believe in braces at all, so for me to have even had the consultation with the doctor (based on her dentist’s recommendation) is a huge step.  So I have to go get her out of school for that, then run her back to school so I can run back up to my eye doctor appointment where I will hopefully hear that I have the all-clear on the demon eye and can go back to wearing contacts.

th

If my head doesn’t explode before then. Actually that might be a relief.
And really that is all the whining I have for today.

I just needed to get that out, how crappy I feel. I’m not whining for sympathy, I promise. Because most of my truly good friends have ZERO sympathy for me – they just tell me to suck it up and get back out there!  Which I do need to do – and I will, as soon as I’m done with my pity party.  Thank God  that Ben was home this weekend  (he was originally supposed to leave yesterday again) – because I could not have survived the children with this craziness. As it is, i’m not sure how I will handle it when he leaves tomorrow morning again, but I guess I’m hopeful that i make a miraculous turn around. I just hope none of them get this. It is by far one of the most brutal colds I have had in a while. i have three secret weapon OTC meds that I use when I get these sinusy things every couple months. Not a single one of them or a combo of all three at supposedly lethal doses is even touching the pain. I’m thinking this may have something to do with the ridiculous steroid drops I’m on, but am not quite sure how steroids in my eye would go systemic, except for the fact that I can taste them when they go in my eye because they are so strong. Never mind me, i’m rambling because my brain is slowly being overtaken by mucus.

I’m going to have better/funner things to blog about soon I promise.

If you have any good insta-fixes for colds from the debil, send them my way please.

Also the kleenex.

Be well, friends.

terra

Back for the Broviac.

So.

We survived the week. My mini-meltdown of last week did eventually find resolution. No one was left behind, everyone made it to their respective places, my sanity and faith in humans and goodness was restored.

Karissa’s appointment. I’m not quite ready to talk about all that the details mean, IMG_4607 but the testing that she underwent last week at the appointment with the audiologist did confirm that there is indeed “ a problem” with Karissa’s processing of audible information. She “hears” things ok, but does not “listen” ok. You know on Charlie Brown where the teacher talks in a “wahhh,whaaa, wahhh whaaaaa” type of voice? That’s how Karissa hears in pretty much any situation where there is background noise. I mean, I KNEW all of this. And in some recessed corner of my brain, I knew she would probably one day be hit with this diagnosis, but to have it there in black and white on a report in front of you, to be handed a list of “how to help your child in the learning environment” tips for the teachers…ugh. It just hits a little harder than you think you’re prepared for. I mean, when she was neck deep in therapy at the age of 2, a therapist first brought up that she likely had “Central Auditory Processing Disorder”. It sounded like a nice way of saying she couldn’t process info correctly, and it seemed to fit.

Having the audiologist hand us that “official” diagnosis however was far different. Because I sat there in that little room, watching my beautiful baby girl with those huge headphones on her head try to follow the directions in the test. Try to focus on hearing the sentence in just her right ear while numbers were being whispered into the left one. I watched her go from a perky, energetic, leg-bouncing bundle of smiles into a limp, melty, strained, withdrawn, sad little girl, with hardly the energy left to sit in the chair upright by the end of the test. It was a dramatic change. One I was not ready for, really. We are going to need more followup with her neuropsych doctor, and will obviously need to meet with her teachers at school to discuss how to help her in a classroom setting (as you can imagine a room full of 3rd graders is not exactly “free of background noise”). When I emailed her teacher to give her a heads up that our conference time would likely not be enough (we get a 15 minute conference with her in two weeks), i got a phone call rather quickly from the teacher. We were able to discuss a few things right away, and her teacher brought up that she had also seen karissa do the “energy slump” in a dramatic fashion a few times. Clearly, we have a few things to tune up for her. But I am so relieved to have a teacher so willing to help her students thrive in the classroom.

We’ll get through that one like we always do. it won’t make it any easier to actually DEAL with Karissa’s cloud gathering, but at least we can be armed with more info. Figure out ways to help her succeed instead of feeling like we are all always picking up the forgotten pieces for her. Like i said at the beginning – there’s a lot of stuff to unpack from this new piece of baggage. It’s less about the diagnosis itself and more about how to deal with the unique special needs of another K. Last week was just not a good week to get the info. This week isn’t tons better, but by next week, i’ll have it all sorted out, just you watch!IMG_4722

Anyways – tomorrow morning I’ll be getting up bright and early to pack Kendall into the car for yet another trek up to milwaukee. Another lonely wait in the crazy waiting room. Another scar earned by my beautiful little girl. As far as surgeries go, this one is “easy”. We’ve been down this road plenty of times before. But for some reason I feel a sense of urgency to pray for God’s guidance of the surgeons hands, pray that her veins are open and strong enough to hold the line, pray that there are no crazy kendallisms thrown in that would throw this “easy” surgery for a loop. She is still making a recovery from the sepsis of last month. She has not slept well in a few days and is more tired than her usual tired. She quite likely has another nasty UTI brewing as she has battled lots of pain, a low-grade fever, and the most disgusting smelling urine you can even imagine in the past 48 hours. All of these things just conspire to make it a “less than ideal” situation for tomorrow’s surgery. This picture is of her going to bed the other nite, hooked up to all of her tubies – 3 IV lines for all her meds and tpn, G-tube to drain, J-tube feeds, urine drain tube (foley catheter), oxygen, pulse ox probe. She crosses her legs like that when the bladder spasms are super painful, and she will sleep like that almost all nite. She’s picking at her fingers because the skin is just peeling off of her fingers and toes, and causes more pain for her. (I have no idea why this is, I think it’s a micronutrient/metabolic thing, but not sure. Anyways – not much we do helps it, so she just deals.)

So – we need prayer. Lots of it. I’ve had the pre-op nurse tell me to pack a bag (actually she laughed out loud when i said that we normally get discharged within a few hours of this surgery), and even Ben reminded me that I better pack a bag. Any medical momma knows – if you pack a bag and have it in your car, you won’t have to stay. But if you don’t pack the bag, and you have nothing ready with you, chances are very good that you will be admitted. So i’ll pack two. Just to be OVERLY prepared so that the backwards superstitious magic we mama’s hold on to works the way it should. The big girls will be in good hands – their daddy’s. He was able to get his flight bumped back so he could be home with them all day. This will be huge for their emotional wellbeing. They are all extra crazy/clingy/emotional when i’m not there, when we have to go to milwaukee for any reason. I was so grateful for everyone who stepped up to help us last week – but would have felt bad hefting the entire emotional burden upon whomever had each of them. It’s not easy. None of this is. Some days i get really really really tired of juggling all that I do, and just want to run away, if even for only a few hours. But at the end of the day, I know we are all blessed. We have no need to complain, because we have so very much to be thankful for instead.

IMG_4739I’m already tired. And i still have to pack. And get everything ready for the morning because goodness knows i will not be the most coherent and organized at 6 am.

We were able to get her special magical “glass slippers” to complete her Cinderella ensemble a couple weeks ago. I’ve had them hidden since then, waiting to surprise her on Halloween. But you know what? I think if any little princess ever needed some glass slippers, tomorrow would be it. So i’m gonna let her wear them.

Bibbity- Bobbity-Boo, baby girl.

 

My team of “Terra Texters” – you know what to do. Send me the funniest, craziest, most ridiculous stuff you can think of during my time in the waiting room. I don’t get to answer them all – but I do read them all. And they help me not feel like the walls are closing in on me during the long lonely waits. She’s scheduled to go back at noon, start time of 12:30. If you want a more up to date time, check the Terra Talking Facebook Page.

Don’t Stop Believin’.

 

Terra.

Related Posts Plugin for WordPress, Blogger...