Our Lives - in a Nutshell

Goodbye For Now

2014-06-15T17:08:00.001-05:00

I don’t think there are many of you left out there checking in to see if I will EVER update again, but this is for those of you who are still there, reading my ramblings. I have made the decision to make my blog private, at least for a while. The decision was not an easy one, because I happen to love rambling and sharing details that I probably would never share verbally. I love keeping track of the seemingly mundane & tiny details that work out so intricately in our lives – not for the sake of others reading, but for the sake of memory-keeping for MY family. I love keeping those I love updated on the on-goings of our little family, and I just really love the outlet blogging has been for me.

I’d love to say that I’m scared of the lack of privacy for my family & my kiddos, but I’m not. I guess I feel like if I am scared of privacy on my blog (that hardly anyone reads), then I should be MORE scared of Facebook and Instagram, too. But I’m not. We live in the land of the world wide web and this (lack of privacy) is just the way it’s going to be if we want to be involved in social media at any level. And boy could this topic take on another gazillion tangents, but I just won’t go “there.”

For reasons I can’t quite put into words myself, other than the fact I feel like nothing is private/sacred anymore – my blog is going to be off the grid for a while. Maybe forever. Maybe for a day. Who knows. That said, if you’d like to keep updated if/when I do update again, please send me an email at lougirl{at}live{dot}com and I will put you on a list and email you when/if I start back up (because more than likely, if I do start writing again, I’ll leave it private and you’ll need to be approved to “enter”). I will leave it up and running for a little while longer so my lurkers have time to read and email me if they’d like to continue lurking And in case you’re wondering about keeping updated on my journey with NMO, I will continue to keep my Caringbridge site updated.

Thanks everyone - for sticking with me these past SIX YEARS of blogging – the outlet has been such a blessing to me.

Catching up & Horse Painting

2014-04-27T22:02:00.001-05:00

It’s been over a month since I posted last, for good reasons, of course. FLU. It was spectacular and I’ll leave out all the gory details other than the fact that 5/6 of us were down and out with the stomach flu (DH’s immune system is nothing short of AMAZING), and not two weeks after that, I was lucky enough to be blessed with the “regular” flu – just me, myself & I (I guess that’s good?!). We also threw some ear infections, pink eyes, many coughs, pharyngitis, and even a 3rd birthday party for a special little someone. It’s been a loooooooong month of sickness among all the other fun stuff, but we survived. Barely. Our grocery bill wasn’t as high because of all the nonsense, but what we saved in food, we made up for in water consumption in the form of bathtub usage, laundry, & toilet flushings. You’re welcome.

Mid-April we went and painted horses.

Literally.

This first horse is Summer. She’s a pro at being painted, apparently. Because people paint horses everyday, don’t you know!?

The 2nd one in the gate was Benny. This was his first time being painted and he took it like a champ! Ella created a conversation bubble because she knew he was thinking “this is weird!”

Addie got to sit on Benny to scrub off his back better. Scrubbing them off proved to be more difficult than anticipated, but it got done and the horses seemed to love their baths.

It was such a beautiful {& windy} day out there at “the farm.” It really kind of made me want to move to the out-skirts of town. Like kind of badly….sigh.

I’ll try to catch up on Nora’s 3rd Birthday Minion bash, soon.

Provisions

2014-03-14T15:01:00.001-05:00

I have been nearly nine months relapse-free, yet probably only about four months 98% recovered from that most recent NMO attack back in June. Five rounds of IV steroids, a 10-day hospital stint, PLEX, insomnia, and adjusting to new meds really took their toll on my body. They also took a toll on our finances.

As I have said time and time again, we have learned SO much over the past year. One ginormous lesson we’ve learned first-hand is about how God is the provider for our family. We know in our minds that God is the provider of anything and everything we have in our lives – He provides the jobs we have and the food on our table. We KNEW that. We did. And then NMO happened, and this saying took on extra special meaning.

The day my eye doctor ordered an MRI and we called around frantically trying to find the cheapest place we could find, I clearly remember freaking out about how we were going to afford what we thought was going to be a $700 scan. Because let’s be honest – we had just moved from MN to KS two months prior, DH was just starting his commission-only job, AND we bought a house that needed a LOT of work.

Well let’s just say I underestimated that initial scan by $8300 (It ended up being a “special” scan). So from November 2012 through December 2013, I had an MRI, a lumbar puncture, a blood patch, countless eye doctor appointments, a hysterectomy because of massive fibroids, a blood transfusion, another MRI, a chest X-ray, ten rounds of IV steroids, five rounds of plasmapheresis (PLEX), a 10-day hospital stint, more specialist appointments in KC and Dallas, another chest X-ray, pneumonia, a gazillion blood draws, an added diagnosis of Fuch’s disease, a chest CTA, and best of all, the regained vision of my right eye. For those of you who aren’t aware, I don’t have health insurance, so I got the privilege of seeing every single charge billed directly to me. It was quite fascinating and after a while, DH and I would start playing “guess that bill” after each doctor visit. We were beyond the point of worrying about how we were going to pay the MORE than $100,000 (yes, you read that right) worth of medical bills I racked up. How can you worry about paying such a huge debt, when you’re just trying your darndest to put food on the table?

Isn’t it funny how we worry about the “tiny” little $700 bills and then just say “whatever” to the unbelievable massive bills? As if something in our pea-brains think that WE are the ones providing for the seemingly little things in life, but that only God will provide the big things. I suppose that’s half true. He does provide the big things, but he also provides the little things. God is sovereign. He knew all this was going to happen, He allowed it to happen for His glory and His glory alone. We knew He would provide a way for us to pay for it all, too.

To write down all the ways He has provided for our family through His people – would be a sizable novel. From givers who donated their precious time and resources putting together meals, transportation, and even reading stories to my children at night when I couldn’t see, to the silent, anonymous givers, He provided. From the random cash taped to the front door to the most delicious apple pie on the front porch, He provided. From the child-care arrangements while I was in the hospital to the sweeping of my {disgusting} floors, He provided. From the literal scrubbing of my {really gross} feet and the plucking of my unibrow, He provded. From the gas cards to the liquid-motivation caffeine cards, He provided. From the extra food, TP and toothpaste I found in my pantry weeks later, He provided. From the milk jugs we didn’t have to go out and buy at midnight to the meals that were lovingly placed in our freezer, He provided. From money given specifically to buy school supplies for my kids, He provided. From the most gracious gift of people just taking the bull by the horn and DOING without asking so that I didn’t even have to think, He provided. And from the awesomely generous benefit our church held for our family and another family with medical issues, He provided.

I sit here today humbled to tell you all, that besides just a few thousand dollars from more recent tests and of course my ongoing monthly expenses directly related to NMO meds and maintenance, God has provided every single penny. Whether it was from direct or anonymous givers, hospital grants or our own finances – it was ultimately ALL from Him, through His people. That’s over $100,000 in debt, paid in FULL. So many analogies could come of this, but there is just so little time.

We deserve nothing, yet we have been given everything. And even if that debt was still lingering over our heads, I would say the same thing, because it would still be a part of God’s perfect plan.. As one of our pastor’s asked us once: “Do you really want things to be fair in life?” No. No we don’t want things to be fair! “Fair” would buy us all a quick trip into the fiery pits of hell. But because of God’s grace & mercy, things are thankfully so not fair. And for that, I am thankful.

An Enjoyable Tardy Morning

2014-02-25T22:19:00.001-06:00

On school days, I’m up by 6:20am, and not a minute later if you know me. I shower and get half ready before I wake the two bigs up by 6:50am, and they are usually running out the door right around 7:25am.

Today I awoke to a phone ringing from DH’s phone. I knew who it was from the ring-tone. It was our “bus” driver (their awesome aunt).

It was 7:28am.

There wasn’t any panicking going on, just sheer amazement that I slept through alarms. That just doesn’t happen. I triple check my alarms and volumes before I hit the hay at night. It’s the last thing I do. I have a major fear of sleeping through alarms and thus :::gasp::: being LATE to things. Most days that’s a fatal flaw when you have four children.

After the shock wore off and I really couldn’t take more time to figure out what was wrong with me, I initially thought I would wake DH up and have him bring them to school. But then I remembered – DH doesn’t know where he is, who he is, or what he’s supposed to be doing until he showers and drinks a full cup of coffee. It would have been a futile, maddening attempt on my part to even try at that point.

So I went to wake Jack up first. He’s one of three children who inherited my ability to have complete focus and alertness the second he wakes up. So I told him that we overslept and that he needed to hurry and get ready. The boy thrives on this kind of stuff and he definitely rose to the occasion. Last year, Kindergarten, this would have thrown him for a loop and he would have been a puddle on the floor. Yay – what a difference a year made for him!

Then there was Ella. She wakes up like her father, but unfortunately she’s eight and doesn’t drink coffee. So I have to manually move her legs off the bed before she finally realizes that she even has legs and needs to use them to go somewhere. I explain to her just as I did with Jack, but she doesn’t have a clue what I’m saying until she walks upstairs and realizes that it’s lighter outside than it normally is when she wakes. Light bulb moments don’t come easy for this child before 10am.

They both ate breakfast, and we headed out the door. The pace was easy and relaxed. Heck, I had an hour and 18 minutes more sleep than usual – I felt like a NEW WOMAN. Minus a shower.

The tardy bell rings at 7:50am. I got them there at 7:52am. I patted my jammie-clad, bare-footed self on the back and drove off with a smile and the radio cranked to whatever music I wanted. I then decided to treat DH to a very special treat since he’s been putting in 2 & 3am nights the past two nights (home-improvement project to be revealed later), and drove through Starbucks for a large dark roast cup of motivation. As suspected, he and Molly were still conked out in bed when I returned. He said he woke up to the smell of the coffee while I was in the shower.

Mission accomplished.

It turns out, HOURS later, I found out through not getting phone calls or text messages, that someone had put my phone on “blocked” status. How? I have no idea. So I was relieved to find out that my hearing is just fine and that I really didn’t sleep through anything, because there was nothing to sleep through. Everything was being blocked. Now I’m just adding another thing to triple-check before bed.

I am thankful for this morning. A chance to drive my kids to school. I admit that in previous years, this would have totally thrown me for a loop and probably made me quite cranky if I’m honest. Seeing progress in my own life is encouraging, since I knew it was an area in which I needed (and still do) a boat-load of work. So if there’s anything to take away from this typical mom story, it’s that prayers for overcoming obstacles in your life, and hard-work, pay off! I was able to give an extra measure of grace to myself and to my kids this morning, and that made all the difference in the world. Will I always consider waking up late to be a blessing in disguise? Probably not, but today I did.

Motherhood ~ A Candid Account

2014-02-24T23:01:00.001-06:00

I appreciate people who tell it like it is. Who aren’t afraid to be real. Who don’t pretend to have it all together, yet strive for better.

I think you’ll appreciate Kelly Corrigan’s Thoughts On Parenthood, too. Foul language and all.

My Little Peanut

2014-02-17T23:44:00.000-06:00

Most of you know that Addie has had her fair share of struggles with weight, hypotonia, and seizures (click on each to read where it all started). When we were getting ready to move to KS in Sept of 2012, Addie was just over 3 years old, had been through essentially almost 3 years of OT & PT, and was just at the tail end and passing out of all of her therapies, even growing out and not needing new orthotics!

Lately she’s been really picky about what she eats and most meals end abruptly after only a few bites with “I have a tummy ache.” So we waited it out because, well, toddlers are picky – this isn’t our first rodeo. But then her eating took a turn out of the realm of “normal” toddler eating.

Normally a kiddo will say “I’m full” and then promptly ask “what’s for dessert?!” That wasn’t the case with Addie. She would literally take about three bites of cereal in the morning, and declare she had a tummy ache. When I asked if she’d like anything for lunch before school, she said no. I asked if she wanted COOKIES? No. CHIPS? No. CANDY? No. I listed all her favorite things and I got a big “no” for all of them. And that’s when I knew I needed to make an appointment for my peanut.

Sure enough, she had lost a pound in the past 6 months, and grew a little (I can’t remember how much). She dropped 4 points on the BMI scale. Not good for a toddler who is supposed to be growing. So she had a tummy X-ray which thankfully came back normal. So the doctor thinks she may have reflux and has started her on six weeks of Prilosec, followed by a weigh-in in early April.

Would you please pray for my peanut – that this medicine would be all that’s needed to help her to eat more and gain weight?

Also, I’m still playing catch-up on posts, so feel free to scroll down for new ones, OR you can sign up for email updates (on the right side called “Follow Me”) – no spam at all – you’ll just be emailed when I publish a new post. Easy peasy.

Fuch’s Dystrophy {Another Dx}

2014-02-02T00:45:00.001-06:00

Just FYI for those of you who follow my Caringbridge site – I’ve added a new journal entry with a brand spankin’ new Dx added to my already impressive medical chart. Now I’m off to see yet another specialist – a CORNEA specialist this go-round.

Back Dating

2014-01-24T23:40:00.001-06:00

Just a quick note to mention that I’ve made several new posts, but they are back-dated all the way back to Sept 30, 2013. They are loaded with heaps of UN-edited pictures, just a warning.

Just Write

2014-01-21T22:33:00.001-06:00

I missed this. I really, truly missed this.

Spewing out word-pictures depicting life as I know it.

A spattering of craziness that is near and dear to me.

I need to make writing a priority again – for fun – for my kids. I was looking up some old information the other day in my blog and instead of cringing over what I had written (which I totally thought I’d do), I was SO thankful I had written the boring, seemingly mundane things of life. In fact, I wish I would have written more.

You see, my memory has a bit (okay, a LOT) to be desired lately. So does my attention span (I’m really dreading the next cognitive testing down in Dallas). So that has scared me (since October) from writing. I’m afraid I’ll always be repeating myself, and frankly, going back to look at posts just to see what I wrote is entirely too time-consuming and boring…so I just quit all together.

There are other factors of the “great blog-break” too, of course. Un-motivation. Fatigue. Feeling judged was a big one. Also, I didn’t want to over-share. This goes along with my love/hate relationship with Facebook and the fact that over-sharers REALLY irritate me. I realize this is all MY problem as I can choose to not read, un-follow, or de-friend certain people. I get that. But just the possibly of being an over-sharer myself was enough to keep me from writing.Stupid, I know. This is my blog. It is mostly for me and my family – a digital scrapbook (since I have yet to even start Addie’s and I’m not sure Nora even HAS one…). I do NOTHING to promote this silly little thing. In fact, most of my FB friends have no idea I have a blog, and I like it that way. Most people follow because they love us and care about us. I love that. So for my family and for those who like to read my silly spatterings – I am doing this for you.

I have been organizing pictures from last year and realize I have a lot of catching up to do! I’m not going to promise I ever will, but I’d LIKE to…and I will be post-dating. Because OCD. Order people. I need order. Some things haven’t changed.

Thank for sticking with me. I promise you’ll be seeing more ~~intriguing~~ pictures like this:

my sweet Nora who makes life a lot more fun.

**Um, yeah….and then after I hit “post” I saw that I have already posted this picture. And so it begins….**

The Littles

2013-10-15T23:16:00.000-05:00

These girls.

Formerly referred to as “the babies,” they have now grown far too big, but I still can’t help refer to them now as “the littles.” So we have “the bigs” and “the littles” at our house. Half and half. Or let’s be honest, since my brain left the building YEARS ago, I actually refer to them ALL as “YOU….whomever you are.” They laugh at me and I cry a little inside knowing I’m getting to be more and more like my mother every day. But by the end of the day, I’m sure the kids pretty much only hear “Muah muah, muah muah, muah muah, muah muah” (think Charlie Brown’s teacher) anyway.

Ahem. Anywho.

The littles and I get the spend our mornings together this school year, and it’s been a nice change. I can’t say that it’s much quieter than having them all home, but it’s definitely a different dynamic. I love when they have moments like the one above. Some days it happens ALL morning long (and I wonder who they are and what they’ve done with my children), and other days are spent teaching them lessons on what NOT to do and how NOT to act, and of course the reasons behind all that. Parenting isn’t all fun & games after all.

There are days when the stars align and I choose to be a “fun mom” by letting them play with rice. MOST days I let them wear whatever they want (until I bring Addie to school), and often I get to see Nora’s creative fashion sense. She kills me.

Even during the fighting, the nagging, the tattling, and the bickering, I am so thankful they have each other to be with through life. Ella loves getting all three of them together for “girl bonding” – to dance, draw, play school, and teach them about horses, naturally. These two have the best roll-model of a sister they could ever ask for, they just don’t realize it yet.

When I see pictures like this, I know that even though I’m ready for the next stage in life, I WILL miss this stage, no doubt.

I’ll miss it a lot.

Hiking the Trails at the Nature Center

2013-10-12T02:13:00.000-05:00

Once the weather turned a little in the Fall, we’d skip the water-play and head out on the trails at our local nature center. Again – one of our favorite places to go! Even though we didn’t play in the water, we still went in our ratty play clothes because, well, they are kids. Kids = dirt. And truthfully, sometimes we’d go spur-of-the-moment so I would just say “go get dressed, we’re leaving in five minutes,” knowing full-well they’d pretty much look like ragamuffins.

Hmmmm…..which path should we take guys?

I liked hanging out in the back by myself, watching this:

I can’t wait for Spring so we can get back here again.

Playing School

2013-10-11T23:48:00.000-05:00

The kids’ weekends are often spent ~~making messes~~ playing using their imaginations. I wouldn’t know what that is, as I seemed to have lost mine years ago. They love playing “school,” which is ironic of course because they always tell me school is “boring.” I know better.

Nothing says school like a tiny space blockaded by pillows. Oh yes, and lots and lots of snacks hoarded under the bed. Perhaps I should go visit their school and see what kind of operation they are running over there.

And here is the reading corner. Addie is really the only one who sits nicely.

At the end of the “day,” Ella fills out report cards for both Addie and Nora. I really need to take a picture of those. She usually sings Addie praises and then Nora’s usually goes something like this: “Naughty. Disrespectful. Loud. Doesn’t follow rules!!!!!!!!!” Good thing Nora has a few years left to learn the standards set by her siblings.

Hello, October.

2013-10-09T00:39:00.000-05:00

I honestly don’t know how a month passed without a single post. Oh wait. I do. It’s called LIFE. I can have my calendar looking fairly uneventful on Sunday evenings and then by Monday it’s full of random things that just pop up. If July of this year has taught me anything (and it taught me a LOT), it’s to be more flexible and to just enjoy every moment, and I think for the most part, I do.

Sometimes Addie will just head outside and sit on the porch with her dolly, enjoying the scenery & escaping the noise. She enjoys her moments.

Thoughtful girl.

Nora marches to the beat of her own drum. There are very few moments that she doesn’t enjoy in life.

Happy girl.

And I’m lacking in pictures of the older two. My bad.

DH has been busy with work and now that school is in session, has also started subbing at the high school. I hear stories and am convinced I’d be a terrible high-school sub….I’d most likely be under the desk sucking my thumb. Give me a room full of Kindergartners any day thankyouverymuch.

I’ve been back at starting up Blue Yodey again, which is nice. There was a time there when I wondered if I’d ever get the desire to get back in the swing of things. I’m mostly making baby gifts and am taking a couple custom orders if people contact me.

So that’s a very small nutshell for now. Also, I wanted to mention - for updates regarding NMO and anything medical, I set up a Caringbridge site. You can search my name on www.caringbridge.org or if you’re not sure of my last name, just leave a comment with your email and I’ll reply with a link. I wanted everything medical to be in one neat little space (think: OCD).

Nature Center

2013-10-02T00:56:00.000-05:00

As much as I complain about this city having nothing for the kids to do, I must admit, we do have a kick-butt nature center. I’m telling you, if my hometown had something like this, it would be a HIT. It’s my favorite place to take the kids on nice days. Especially the age they are now. I can bring a coffee and park myself on a bench somewhere and just “be,” while they play. Or even better – meet a friend there and actually get to have a REAL conversation while the kids are entertained. It’s fenced-in & FABULOUS.

I would often make plans to feed the little two an early lunch then go during the lunch hour when NOBODY is there, wear them out, then bring them home and plop them in bed. And often, on nice days, I’d pack a snack so when I picked the big kids up from school, we’d head there until dinner. And even better, on the weekends, we’d pack a dinner or grab a pizza and eat it there before heading off on the trails. It’s rad.

The playscape is the part that’s all fenced in and has so many fun things for the kids to do – including a chalk board. Ella was going over all the animals she had seen that day. By the way, this was October 1st….this is when I love being in Kansas.

After my first trip there, I learned my lesson: to NEVER take the kids there wearing nice clothes. There is sand & water. A kids’ bliss & parents’ nightmare when nice clothes are involved. So now we go ratty, and even bring a change of clothes to change into before getting back into the car. See, old dogs really CAN learn new tricks.

The big cousins often came with us – proof that it’s fun for EVERY age.

I’ll try to get more pictures of the other parts of the playscape this Spring. I can’t wait to go back!

Jack’s 7th Birthday

2013-09-30T00:36:00.000-05:00

Being that he’s almost 7 AND A HALF, I thought I should probably post some pics from his birthday WAY back in September (I’m back-dating so I can find stuff later). Here he is for just our immediate family “party.” I made cupcakes for this celebration and saved the cake for when the rest of the family came over.

Oh look, two months post-PLEX, the pudge is KIND of coming off my cheeks…
And of course there is dad with his little side-kick. I love my boys.

No, Ella did not buy all that for her brother, but she did go spend her own money on a little cap gun for him. They love each other. Here’s proof for future evidence.

Later we had family come over for cake, ice cream and gifts. All the Kansas cousins gathered around. They love getting together.

Singing to Jack

Instead of a big friend party, Jack chose to have one good friend spend the day with him. Jeff took them out to hit some baseballs, then for ice-cream, and back home to play for a few hours. Jack met Cole in Kindergarten. They played T-ball together last summer (and will again next summer), and are in the same class again this year. Sweet boys.

And the yearly birthday thank you card that went out. I must say, I’m NOT a fan of how the boys wear their hats…..but apparently it’s the “cool” thing to do. Sigh…..a sign of my age. I’m sure there will be many, many more…

Happy birthday buddy. I’m not sure what happened to my little man who wouldn’t go to sleep unless he was squished up next to me on the couch for MONTHS, but I love watching you grow and become your own little person – full of ideas, dreams, an loads of potential. You’' make your momma very proud buddy. I love you to the moon and back….even on the hard days.

KS Fair 2013

2013-09-12T02:01:00.000-05:00

Awwww, State Fair Time. Oddly enough,even during the wretched heat, I look forward to the fair every year. Ever since we got married, we’d go for an evening. In the early years we would go and take our gay old time & throwing caution to the wind, choosing to eat grilled corn and Dippin’ Dots. Then we had a child, and then another, and we still went, but those years getting corn meant searching between the car seats and in couch cushions to be able to afford that grilled corn. Great memories.

I missed it when we lived up in MN. The county fair there just wasn’t as entertaining when it came to people-watching. State Fairs tend to bring ALL the crazies out. I love it.

Nora wasn’t old enough to go on come of the rides. She didn’t mind though – she was just happy to be there, sweating in her stroller…

or not.

The ~~germ infested~~ petting zoo is always a big hit.

It was SO fun to see the big three all get to ride rides together. This was the first year Ella and Jack got to ride on a {kids} roller-coaster all by themselves, too!

Ella’s 2nd grade art class drew sunflowers and submitted them to the fair. This was Ella’s:

The littles went on this, their favorite – TWICE.

We finished the sweaty night off with a ride on the BIG Ferris Wheel.

The highlight of this year was listening to the sheep. Pretty hilarious.

Their Point of View

2013-09-10T23:08:00.001-05:00

My kids have become increasingly curious of my {real} camera. They use the cell phone and tablet cameras like they’ve been doing it all their lives (which they kinda have…), but I will never let them “play” with my real camera, for obvious reasons.

Well, I went to upload pics tonight and I found that there were some pics on there that I certainly did not take. Bunch of sneaks! However, I may just let them keep snapping a few shots on their own from now on because only they can capture what’s going on in their world without feeling invaded by mom watching.

Classic.

Awwww….they would have NEVER EVER IN A MILLION YEARS taken a sweet, normal-faced picture for ME!

Yup, that’s more like it Jack…

Ah yes. The Lego table is where the action has been every day after school since school began. For the record, I play no roll in the decorating of the walls here. It takes major will-power to clean their rooms and not strip the walls bare. Thankfully I remember what it was like to be able to “decorate” my own room when I was little – so much fun, and really, it harms nobody. So I’m just not about to squash that kind of fun over my OCD tendencies. You’re welcome children. You’re welcome.

Here’s to leaving my {real} camera out in the open more often in case little hands want to be creative. Now if I am ever fortunate enough to get a DSLR sometime, I will not be so generous. Like ever. I do have my sharing limits and they end at the letter “D.”

Quick Update (Kinda)

2013-09-07T01:08:00.001-05:00

I have been asked several times for an update regarding my vision, etc. Well, the reason I haven’t been updating here is because I have started a Caringbridge site. In fact, I have taken all (or most) of my posts here about MS and NMO and copied and pasted them there as well – so now they are all in the same neat little space. Plus I’ve added a boat-load of new entries, especially when I was holed up at KU Med for 10 days. Warning: those entries are WORDY. If you want to read the entire journey, just start on the last page and work your way up.

Thanks for sticking with me through my blog posting drought period. It seems my “thinker” isn’t feeling “it” lately. That and I have taken very few pictures in the last few months, so that doesn’t help. Poor kids are going to wonder what on earth happened to their 2013 photo albums. You know, because I’m current on everyone’s up until this year…

It took me an entire month after returning home to not HAVE to take a nap (or two) in order to function everyday. And then I went nine days without one. It turns out that it only took nine days for me to conveniently forget what fatigue even felt like, too. Until the 10th day, that is. Have mercy.

Nora has learned to throw tantrums…on the floor. That’s been fun. I have video of that for later. Not because I want to embarrass her, but because it really is kind of adorable. You know, because I know this too shall pass. Such is life with a two-year-old who can’t express what she means/wants/needs.

It’s been in the 90’s for a couple weeks now and I’m really tired of it. It’s September for crying out loud! I found out it is supposed to be 83 next week and I’m thrilled. I also realize this officially makes me a Kansan. 83 and sunny up North is a HOT July day. Sigh. I even caught myself wearing jeans the other day when it was 92 degrees out. I need a MN intervention. Stat.

We’ve officially been Kansans (again) for a YEAR now. Which is nuts. DH and I both agree, however, good riddance to 2013. Oh wait, there are four months left…

So there’s my completely random update. I’m sure more randomness will follow soon. Addie has been begging to go to “the funnest place on EARTH mom!” So I’ll have to post on that….my poor, sheltered child. First day of school pics, too.

Happy 4th Birthday to my Princess

2013-08-02T23:22:00.000-05:00

Oh my how you’ve grown and how far you’ve come in the past year baby girl. You got to ditch your AFO braces while you were three and you even passed out of PT. You have also shot up to be pretty much the same height as your peers, which is huge! You moved to Kansas and even had your first “school” experience once a week at “Wee-Wigglers.” You love to dress up as Cinderella - not to be confused as a princess, as you remind us daily.

For your birthday this year, mommy made you a Cinderella cake, as well as a Cinderella shirt. This was a pretty special deal (to mommy) because I had just gotten out of the hospital on Wednesday, after being legally blind in both eyes for a month. While there, I got enough vision back in my right eye – just enough to make you your cake on Saturday

Family and friends came over to celebrate you, too. You are one loved little girl sweetheart.

This was a CRAZY end-of-July day in Kansas….SWEATSHIRT weather!

Four Year Stats:
Height: 39” (30-35%)
Weight: 34 lbs (45-50%)

This Man {Father’s Day 2013}

2013-07-21T18:07:00.001-05:00

I can’t properly describe how awesome of a husband and daddy DH is. Truly.

Sure, he has issues multi-tasking, doing the girls’ hair, and remembering to open curtains in the morning, but despite those petty things, he’s my rock. He has been strong when I am weak. He has picked up my slack when I’m stuck lying in bed at 6pm. He cooks, cleans, gives baths, he’s my chauffer, he makes sure things color-match, folds laundry, cleans the kitchen, mows the lawn, takes the trash out, reads bedtime stories, grocery shops, cuddles with the kids when he knows they need it, and always makes sure I have what I need.

He’s pretty amazing.

And he’s all mine.

Thanks for being you babe. I pray our girls find someone just like you to marry….in another 30 years.

I love you.

July 4, 2013

2013-07-15T19:22:00.000-05:00

We had planned to be in MN over the 4th – at the lake, where I have spent every 4th of July since I was 7, maybe missing one or two years in there. Then Jeff worked at a fireworks stand over the 4th to make some money for our trip, so we planned on leaving the 5th instead. Well, until THIS happened anyway. And our trip was suddenly cancelled.

So we made lemonade out of lemons and went to the parade with friends & family – and it wasn’t even 100 degrees which was a huge blessing. I couldn’t see much of the parade myself, but the kids liked it!

Afterwards we headed to my in-laws and all had a yummy grilled lunch. Afterwards the kids played outside with sponge-balls and water guns! They also watched as DH lit off sound little firecrackers in the driveway. Daring children we have…

DH had to work that evening so my chauffer & friend Debbie took us and the girl cousins to a big field to watch the big city firework show - they all had a blast and to be honest, it was a really great show! Just really short (10 min).

Changing Gears

2013-07-12T17:01:00.001-05:00

The first four hours of our childless trip to KU Med were awesome. Ten-minute stops to get get gas and use the restroom. A drive-thru lunch we ate in the car and didn’t have to share. Filled out forms un-interrupted. Chatted and laughed an hour in the doctors office for almost an hour before she came in.

I’d gladly take it all back – the noise, the longer trip, the sharing, the interruptions – if it meant I didn’t have to hear our new reality.

We went in to discuss three things:

1. Starting a new 5-day subq injection that is often given if IVSM and oral steroids fail. We figured this was a no-brainer.

2. Starting on a new MS med – the strongest out there, yet the one with the most risks.

3. The (seemingly slim) possibility of doing plasma exchange (or plasma-pheresis), otherwise known as PLEX.

We ended up leaving with a new diagnosis and an appointment scheduled for PLEX.

My new diagnosis is Neuromyelitis Optica, otherwise known as NMO, otherwise known as Devic’s Disease. In order to keep this somewhat short and sweet, I will wait for another post to explain further what NMO is. Feel free to use Google in the meantime.

I start PLEX on Monday up at KU Med. The process is a lot like dialysis – the thinking behind it is that it will remove all my blood (I had to assure Jack it wasn’t all at once so I won’t become “flat”) and basically clean it out, throw some new plasma and other “stuff” in there, then filter it back in. Thus flushing out the yucky stuff that’s attacking my brain/nerves.

I will be in-patient for 10-14 days for either five or seven treatment sessions – an every other day type of thing.

It’s going to be a loooooong two weeks of kids and hubs spread here and there, but we are so thankful to everyone who has stepped up to help us – it’s been amazing to have such wonderful support.

I’m sure I’ll have daily, boring updates once I’m laid up in the hospital for 14 days twiddling my thumbs. I do have plans to finally finish Nora’s first-year online baby album (or as much as my eyes can handle), but other than that, if you’re bored and in the area, you know where I’ll be.

The One in Which I Let the World Know {FB Status}

2013-07-09T01:02:00.001-05:00

I just wanted to copy/paste what I had to say on my Facebook status when I chose to tell the “world” about the results of my neuro-ophthalmologist appointment. I continue to be humbled by the outpouring of love and support I received from my friends and family.

_____________________________________________________________________

I have, at age 35, officially driven for the last time. The nerves in both eyes are pale and dead. A game changer. I officially represent the 5-10% of people with MS who walk away with permanent optic nerve damage. I am what they refer to as an "odd duck." If I'm honest, I'd rather be a very common duck at this point. Even a one-legged duck. But as it stands, I'm special.

I may not be able to cut my kids' 80 nails, nor see food on their faces, match their clothes, tell who they are from a distance, or read them bedtime stories, but I can tell you if they don't have their shoes on, their hair brushed, have something they shouldn't, are giving me "the stink eye," and can FEEL their hugs all the time. I'm THAT special and blessed.

Isaiah 55:8-9: "For My thoughts are not your thoughts, nor are your ways My ways," says the Lord. "For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts."

I do not pretend that my battles are any harder than others, because they indeed are not. i have a great life. But life is hard. Life is hard when things are "normal." So please don't feel like you (my friends & family) cannot complain to me that you're having a hard day. I get it - believe me, I get it. I can sympathize, empathize, and tell you that you are normal. Because you are. I just urge everyone to keep "those" days in perspective. I guarantee you it will make your day feel a little less "hard" in the grand scheme of things.

I believe God gives us an extra measure of grace and clarity when going through trials, when others can only imagine the worst in a situation. As appointments keep piling up and new devices are needed for my ADL's (activities of daily living), and just everyday living happens, I have had nothing but PEACE in this situation, since day one. Would I love for things to be different? Of course! I am human, after all. There are SO many things I wish I could have done and seen when I had my vision. But that ship has sailed. We need to move on, carry on, and make the most of every. single. day. Even if it has to be confined to these four walls. I choose to love more. Try harder. Do better. Choose joy.

This is a crummy situation, no doubt. But I'm not dead yet. God has chosen this path for me and I will continue on in steadfastness. There is nothing I can do on my own - nothing. I will rest in Him.

Matthew 11:28-30: “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Pardon me if I don't wave. And please note, you will get sick of blind jokes. Consider yourself warned. Also, please tell me if I have food on my face or all my children's clothes have a red tint.

In the Blink of an Eye {2nd Relapse}

2013-07-08T01:03:00.000-05:00

June 22, 2013.

Our 10th wedding anniversary.

DH and I had gotten the chance to go out for a couple hours of rare alone time so we went out to eat. Nothing fancy, but we aren’t fancy people. So we ate and then headed to Kohl’s so I could try to find some swim suit bottoms that actually covered my entire bottom (winter & Prednisone was not kind to me). Let’s just say it didn’t end well. I hate dressing rooms, and I left there with the personal promise to hit the gym more frequently.

I had to get a couple orders done that evening (yes, I’m such a romantic date!) so I came back upstairs after working, around midnight, to find DH watching hockey. I looked at the TV and noticed the bottom half of the screen was darker than the top. I decided I must have been exhausted and told him I was going to bed.

The next day I woke up and couldn’t see the alarm clock across the room, which often happens if I’m super groggy, so I just checked my phone. I couldn’t see that, either.

Uh oh.

Naturally, it’s Sunday (my first relapse happened on a Sunday as well). And DH is also working at a local fireworks stand. Triple whammy.

Our neighbor is an optometrist, and while I knew he didn’t want anything to do with my case (who can blame him?!) I texted him (our kids play together that’s why I have his number btw) to see if he had a test or something to check for retinal detachment. He kindly gave my original optometrist a call for me, who then called me personally, again – on a Sunday. Seriously – I’m so grateful for such understanding and caring people.

I then had to call our church to get a hold of my FIL to see if he could drive me to the Dr’s office while my MIL stayed with the kids. We were in his office by 11am.

Good news: My eyeball looked PERFECT.

Bad news: My eyeball looked PERFECT.

Basically that meant that it was again, my lovely dysfunctional nerves behind my eye in my dysfunctional, rock-filled brain. Sucky pants.

We got on the horn with my neurologist while I was still in the eye Dr’s office and got IV Solu-Medrol (IVSM) all set up to go at the hospital as soon as I could get there.

Call me crazy but I was in no rush. I even debated going swimming with the kids and DH that afternoon before heading in for the infusion. I didn’t. My family dropped me off and went swimming while I got my first round of steroids.

The goal of the ‘roids, once again, was to decrease inflammation on my nerve. This time, however, I would do FIVE days of infusions instead of three.

By the third day they all knew my name up at the infusion center, and knew to just point me to my infusion room instead of telling me the room number. They also knew I needed a blanket and a Coke. BTW, I hate Coke…but I hate the taste of IVSM worse.

By the time I was on my second day of ‘roids, the remaining vision in my “good” eye was gone and I now see the same in both eyes. By the time all five of the the IVSM days were over, I had also seen my neurologist, had another MRI, and saw a neuro-ophthalmologist.

I was only slightly hopeful for the neuro-ophthalmologist appointment. That was until she confirmed that indeed, nerves in both eyes are pale (dead). She said I may see slight improvement in my right eye, but she wasn’t hopeful. She did a field test on me, which revealed loads of blind spots everywhere, too.

I am now officially “legally blind.”

Unfortunately, the story doesn’t end there…

My Indian Ophthalmologist

2013-07-04T16:02:00.001-05:00

I don’t mean to stereotype, but I guess I am. Knowing that my ophthalmologist is Indian (dot, not feather), just helps when imagining his accent. Bear with me.

A few weeks back, in mid-June, I had yet another eye appointment (shocker, I know). This time my SIL drove me to the “big city.” Something about driving with dilated eyes is frowned upon…

So we show up. It’s unusually quiet. I am prepared to wait because the facility is one that serves ALL eye emergencies - so appointment times are pretty vague. I was surprised we got right in. The aide, who NEVER reads charts before hand, gives me all the tests – cover this eye, tell me what you can read – yada yada yada. “Cover your right eye. What can you read?”

Me: “Um, I think a 9. And maybe a 5.”

Aide: “That’s IT?”

Um, excuse me, but you work at a specialty eye clinic. This can’t come as a surprise to you. Please go find a job you can be excited and care about. Thank you.

In walks my very dry-humored hilarious Indian doctor. “So what trouble you been up to Mrs. Y?” But then he sees that I have SIL with me…and decides to address her now because, well, maybe he knows I have a crap memory.

He does his thing with his bright lights and shiny mirrors. I point out that when I read, the words just kind of disappear from the page once in a while, but always comes back. He said my eyeball looks absolutely perfect, minus some “lattice” (which basically means I’m susceptible for a retinal tear). “Sweet! That’s good” I said. And then he goes on to say the following, in his very thick Indian slushy accent:

“No. {shaking head}. No it’s not good. It’s not good at all. In fact, your glass is half empty and I don’t even like what’s left in it.”

And I LIKE doctors like this. Call me crazy. But I don’t like bush-beaters. Just shoot it straight, and I will always appreciate that. Always.

It doesn’t mean I have to feel the same sense of pessimism as they do, anyway. They are doctors – they know cold hard facts. Statistics. They don’t know the hope that I have doesn’t come from test results and percentages.

Isaiah 40:31: “But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.”

Slowly but surely I’ll get current with my situation. I found this little chart online. I’ll let you know how I see in another post. And yes, it is one of these.