31 January 2013

hooray for modern technology!

ruby & i chatted with my sister, wendy, & her daughter, hannah, yesterday evening via iPhone FaceTime! it was such a great mid-week treat. i miss my family so much & ruby is currently obsessed with hannah so she was crazy-excited to see her on the phone. these were some fun pictures i took during our conversation. such fun memories!

27 January 2013

a ruby update

so, i know some of you have been waiting to hear about how ruby's neurology appointment went on tuesday. i've been waiting to update here until i had kinda processed the appointment and wouldn't send myself into a downward spiral by re-hashing it all again. but, i am managing it all okay right now, so here goes!

we took ruby to children's hospital on tuesday & she met with a neurology fellow (about to graduate, so that's good!) and an attending. they got a developmental history from us & did some checking out of her, as far as how she looks crawling, walking, etc. they said their first impression of ruby is that there is something going on specifically related to the nerve functioning in her lower half. in general, they noticed that ruby's weakness seems localized to her lower half & isn't more generalized. they ordered a blood test to rule out muscular dystrophies, which we did that same night. secondly, they said they'd like to schedule a nerve conduction and EMG. both of these will give us an idea of the level of nerve functioning in her legs. lastly, they want to schedule an MRI to make sure her spine looks okay.

it was all a lot of information to take in & pretty scary but the doctors were very knowledgeable & comforting, so that helped a bit. i still cried the rest of the night, of course, but that's just par for the course, with me.

dr. verma (the neuro fellow) discussed the blood test results on wednesday with me. he said that ruby's blood results are not indicative of muscular dystrophies, which is very good news, to say the least. he did say that her CK levels were slightly elevated (300, when a normal reading is about 170. CK levels in children with muscular dystrophy are in the 1000's.) he said that he would like to run a blood panel for SMA (Spinal Muscular Atrophy) Type 2 due to the slightly elevated CK levels, as that can sometimes be a symptom. we are praying for ruby to not have a diagnosis of SMA, as it is a degenerative disease. there are no real prognosis predictions for it because every diagnosis is different, but we do not want it to be ruby's diagnosis regardless.

the blood test takes 4 - 6 weeks to get back, since it is genetic testing. and I have to take her in for a blood draw AGAIN for it, which is a big bummer. we are going to go tomorrow morning and just get it over with. in the meantime, we did schedule the nerve conduction & EMG for the end of february. hopefully we will have the blood results by then, too.

but until then, we won't really know anything else. the waiting is hard. at the same time, it is more time for us to continue on like we are without having to acknowledge a diagnosis that we really don't want (IF that turns out to be the case). I guess what I'm saying is if it's bad news, I don't want to know. but if it's not horrible, the sooner the better. i've stopped googling all together. i don't even look at the babycenter boards anymore. i have been trying to stay off my phone & just focus on ruby & T & our time together. i hate that it's taken me this kind of an experience to do that, but it's the embarrassing truth.

so, until the end of february, i hope to not freak out too much & to just enjoy our family. any prayers are appreciated. thank you, to those of you who read this. the support we have had from friends & family has made all the difference for us on this journey. so consider yourself virtually hugged.

23 January 2013

wordless-ish wednesday: life with ruby

there are hundreds of moments throughout the day that make my heart break with happiness directly related to all ruby brings to our lives. here are a few moments from today & yesterday that i came across...

*ruby asking to sleep with "woody", "elmo", and "blanket" before promptly passing out with all three.

*coming across a ruby-built bristle block city.

*finding ruby in the tub, with bubbles on her face, saying "funny! ruby bubble!"

*getting excited about touching the snow as it falls from the sky.

22 January 2013

there's no place like a place with family

last weekend, we got to spend a long weekend (4 days!) in mn with my side of the family. it was so wonderful. we originally planned to have a nice, chill weekend at my sister and brother-in-law's new house, but like most weekends we go up, there are a lot of people to see and much to be done, so chill it was (mostly) not. BUT fun was most definitely had.

we got in late on thursday night, and ruby of course, perked right up when we pulled in the driveway. so we stayed up a bit and chatted with my sister, lisa & lucien. finally got to sleep and friday I got to spend a bunch of time with ruby & maren, one of my nieces. they are a hoot together. they're both pretty chill (albeit LOUD) and really fun to watch. we made a target trip, had lunch, and shuttled my sister to and from a doctor's appointment.

during said trip to target, lisa and I picked up hair dye so we would look fly for our dad's 60th bday party on friday night.

yeah, so that didn't work out quite as planned. lisa's looked great, but mine? well, it turned out mine had the wrong color mix in the box (red mix, brown box) resulting in me getting a very unpleasant hair dye surprise. it was really, really red. so, as to be expected, i panicked, went to dinner, and drank beer. (we went to buca's. dad loved his golf membership and the pasta was wonderful, per the usual.) also, my oldest sister, wendy, and her kids were at lisa's, too, so it was fun to hang with them.

saturday morning was spent attempting to locate a salon to correct my red hair debacle. when no openings were available in minneapolis, I called the aveda school in milwaukee, made an appointment for tuesday (today) morning, and committed to developing my alter ego ("sage", per my sister's recommendation) for the rest of the weekend. (and to be fair, after a few shampoos, the color was not that bad. it actually looked kinda cool. it just wasn't "me".)

however, it was very rocker-chick, which worked because lisa, lu, and I went to First Avenue on saturday night and lost our ever-loving minds in some amazing music. it was the perfect night, topped off with meeting the lead singer of cloud cult. eek! beer was drank, music was danced to, shenanigans ensued, and all was right in the world.

sunday was spent nursing a pretty significant (and well-worth-it!) headache while celebrating maren's birthday at a train store. it was actually a very cool location and it seemed like all the kids had fun.

sunday evening was the one chill time of the weekend and it was much needed and enjoyed. got to visit with my other sister sam, and her new beau, jesse & watched Food, Inc. with lisa.

monday we left in frigid, freezing, holy-crap-it's-cold temperatures and made it home by late afternoon. it was a much-needed trip just before ruby's neuro appointment today (more about that later) because i would have just sat at home worrying, if we had been home. it's hard to come back & leave family, but also nice to be back at our house.

and here's a photobomb of our weekend. enjoy! (especially the one of ruby in her wig. very niiiice, rubinski.)

17 January 2013

grateful for support

i'm off of work for the next 5 days & we are headed to mn for some time with my side of the family. today, as i was leaving work, i was scheduling meetings for next wednesday, the first day i'm back in the office. while doing so, i mentioned to a couple co-workers, who are also friends, that i am off on tuesday for ruby's neuro appointment at the muscular dystrophy clinic.

i don't know why exactly, but hearing myself say it out loud, to my friends, that that is the actual clinic ruby is being seen in & having an actual conversation that this diagnosis could be a possibility, really sent me over the edge.

i mean, really over the edge. suddenly, my mind started racing and i couldn't stop thinking about her appointment. the words "muscular dystrophy" were left on repeat, and i stated to feel completely & hopelessly helpless. it felt a little like what i imagine a panic attack to feel like.

i ran through the list of people i could call to talk to. T, my sisters, my parents, my bestest friend, michelle. but i didn't want to just be comforted, i wanted to talk to someone who knows ruby & her development and needs. so, i called her physical therapist on her cell phone.

it turned out that lisa (ruby's PT) was at home & not with clients today. i apologized for bothering her at home & she told me not to worry about it. i told her that i was starting to freak out about ruby's appointment now that it's getting so close. and then i started crying. like, really losing it.

lisa was such a support and calming force, even just over the phone. she reminded me that i am scared because i love her so much and that we are great parents, doing what's best for ruby - finding answers for why she's not developing correctly, physically-speaking, and looking for ways to help her. she reminded me of the fact that we (nor she) have seen muscle wasting & that some muscles have gotten stronger. i admitted to her what i am most afraid of - ruby's life being cut short due to a dystrophy diagnosis. and she told me that that is her biggest fear, too, because ruby is such a beautiful, funny person. and then she told me about all the treatments that have been found for various dystrophies & possible medications available. she ordered me to stay off google (you're right, erin!!) and made sure i wasn't taking ruby to the appointment alone. and then she told me to call her anytime i needed to and that she would be praying for ruby & us.

i don't think there was a better person for me to talk to in that moment. she went way above her role as our physical therapist. and i can't express in words how grateful i was/am. i don't know how we would get through all of this on our own. but we aren't alone. and that is very comforting.

15 January 2013


kinda freaking out tonight. ruby's neurology appointment is in one week. talking with her physical therapist today, she cited the improvements ruby's made and also expressed her concern that someone with only a hypotonia (low muscle tone) diagnosis and nothing more would make progress quicker than ruby has, typically. so, that's worrisome. not that the PT is qualified to diagnose ruby but it makes me worried that she thinks there is something worse going on.

i've spent the evening consulting with the all-knowing (and often misleading) dr. google. most of the various kinds of dystrophy that i read about don't sound very much like ruby's symptoms. there was one that did talk about fatiguing quickly (which she does) and low tone. the very serious (read: aggressive and often fatal) types are almost always diagnosed in boys, so that makes me feel a little better.

basically, though, let's be honest. i have no idea what any of the information online means and ruby could have any one (or none) of those diagnoses.

the unknown is so damn terrifying. i'm supposed to have faith, i know.

she's so funny and has a huge personality. she is beautiful. her dark brown eyes are exactly like her dad's and go on forever. she tells me "love you, mama. bye-bye!" and kisses me before i leave her for the day. there just can't be something wrong with her that will take her away from me. that will shorten this beautiful life she's supposed to live.

i don't let the doubts out often, but tonight i'm giving myself a break. tomorrow i'll go back to being strong.

11 January 2013

flashback friday: oh baby

i am seriously jonesin' for a baby. for reals. so, to hold me over until i get that positive test, i've been looking at old pictures of ruby. oh good grief, she was an adorable newborn baby. when i look at these pictures, i remember the long nights and painful nursing sessions, worry over not doing anything right, and evenings full of tears (her's and mine). it's good that the infant stage is just that - a stage to enjoy and then pass through. i'm ready to enjoy (and endure) it again. hopefully in the next few months we will be able to share news of a new baby coming. but for now, we will flashback to brand-new ruby days. oh, they were sweet & snuggly.

09 January 2013

growing girl: a ruby update

so, i stopped doing ruby's monthly updates at 18 months. a year and a half seemed like a good round number & i was going through a bit of a rough patch with ruby's difficulty walking, so it all kinda worked out when i had taken a break from blogging.

but i do still want to give updates on the little chica, since a big part of this blog is to be a memory book, of sorts, for her to read when she's older.

so, here goes.

ruby is just about 22 months old (next week). (i wonder when i'll stop saying how many months she is and just stick with years?) anyway, she is full of personality, as most kids her age are. she's got lots to say. and some if it we even understand! :) so, that's a plus. she is saying some three word sentences, like "milk please, mama!"
or "sit down, dad!" it's pretty much a small miracle to actually be able to talk to her since so much of her life i've spent guessing what exactly it is she wanted.

ruby has really grown attached to other people besides T & i, which is fun to watch her do. she has her favorite teachers at daycare and talks about them often. she also talks about her family on both sides. that's especially exciting. when her aunties rhonda & candice are around, she wants nothing to do with T or i, which is actually a nice break for us. she's even started calling my moms by their names, which is pretty funny. you'll hear "margie? wella? (della)" when she's looking at pictures. it's sweet.

she's really into pretend play. we got her a pretend kitchen for christmas and it is so cool. she likes it, too. each night before bed, she usually tells T to "sit down!" and then proceeds to whip him up something with her spoon and bowls she has to play with. and she still likes putting buzz, woody, jesse, and elmo to sleep by laying them on the floor, covering them with a blanket, and patting their backs. it doesn't kill me with adorable-ness or anything. ;)

i've already updated recently on her walking. tonight i held her hand and had her walk up the sidewalk in front of our house and she actually did great! it didn't feel like she was pulling on my hand as much as it usually does. she seemed much more steady and a little less dependent on me. and she was moving quicker. so that's great. people with special needs will often refer to their kids reaching "inch-stones" instead of milestones bc progress can move so slowly, so it definitely feels like she's passing some inch-stones. and that feels fantastic. we have her neurology appointment in a couple weeks so i'll update after that, too.

and lastly, here is a rundown of some of ruby's favorite things:
• toy story, nemo, cars, elmo, sid the science kid
• coloring/drawing/using permanent marker on things that one should never use permanent marker on
• giving kisses, saying goodbye to people, especially T and i if we leave in the morning. (i recently heard "have fun, mama!!")
• peanut butter banana smoothies
• pizza
• rice
• reading books, especially one about tubby time
• oh, and speaking of, she still loves tubby time.

that's pretty much ruby in a nutshell right now. and here are some random pics of her in the last week or so. she's learned how to take selfies recently so there's one of those in the bunch, plus just some of my favorite ruby-smiles of late. i've taught her how to "show her teeth" and say "cheese" so we've gotten some funny pics of her lately.

enjoy! and happy hump day!

07 January 2013

lyrics i love: cloud cult

cloud cult. do you know them? if you don't, you really should sit down with one of their albums & have a drink. i owe my discovery of them solely to my brother in law, lucien. (if you ever read this blog, a million thanks, my brother!)

so, cloud cult is basically the most interesting-sounding, emotion-evoking band i've ever come across. i always cry when i listen to their music. sometimes in a happy way, sometimes not so much. but they hit the core of me every time.

this song is one of the best road trip songs ever written. it just feels right, blasting through your speakers, with the windows rolled down. my definition of perfection.

i'm actually surprised i haven't posted any cloud cult on here yet but i think i'm tweaking out for the concert i'm going to next weekend that they will be playing at. eek! seriously stoked.

so, it's really quite hard for a lyric junkie like myself to choose just a few lines of their songs that are my favorites because they are just all so damn good. (although, if i was being forced to choose from this song, i would just have to go with "i could use your lips on me and a little bit of dramamine..." seriously. seriously!)

so, this song is called "journey of the featherless". and truly, do yourself a solid & youtube this one. you will not regret it. enjoy!

got myself a mission
i'm going to find heaven
i made crepe paper wings
i think they'll carry me well

i left you a love poem
the best i have written
my favorite words
were the ones i couldn't spell

they say that i'm a lunatic
they say that i am full of it
i say that it's worth dreaming
just for the dream of it

it's all about passion
it's all about perception
don't call me on my cell phone
cause there ain't no reception
when i'm gone


honestly i miss you
and i hope that you're missing me
cause i could use your lips on me
and a little bit of dramamine

for the moment i can see
way better than i've ever seen
don't sell my stuff on ebay
cause i might be back
before i'm gone


i'm not the kind of man
who's into looking downwards
i drank my share of pity
from the bartenders cup

so many people
wondering what's the right direction?
as far as i'm concerned
there's only one way up

and my fingers they are blisters
and my eyes they are bullet holes
my heart is still beating
guess i'm pretty lucky...

04 January 2013

hang in there. just sit with it.

since the first time i heard that quote "in three words, i can sum up everything i've learned about life: it goes on" (robert frost), it has stuck with me. it has sorta melded with my favorite john mayer lyric: "and if you never stop, when you wave goodbye, you just might find if you give it time, you will wave hello again."

it's how i have aimed to live my life. minimal freaking out. just go with it, let myself sit with whatever i'm feeling at any given time & them move on from it. don't force anything. as much as i would like to control everything, i cannot. we can't stop this wheel; life keeps on moving.

i had heard that when a parent faces the diagnosis of their child's illness or disability, there's a matter of time that needs to pass before the parent can just move forward. i suppose it's kind of like a grieving period of sorts. life is not and will not be how you think it is going to be. sometimes, you have to let that dream go & accept other realities.

i'm learning this with ruby. at 16 months, i called her pediatrician.

"ruby's not walking yet. but still taking steps. should we be worried?"

"no. i'm not worried. keep practicing with her & we will see how she's doing at 18 months."

17 months. 18 months.

dr. cafaro (our pedi) asked me all the usual developmental question at ruby's year & a half appt. yes, yes, & heck yes to all of them. EXCEPT.

walking. no walking. no jumping. no squatting. no balancing. lots of falling. at first, the pedi recommended we see how she's doing at 21 months. but then i had ruby try to walk for her & she saw what a struggle it was for ruby & she agreed a PT assessment would be helpful. she assured me the PT would help & we left the office.

it's been a little over 3 months since ruby started PT. within two weeks the PT told us that she wasn't seeing progress as soon as she thought she would and encouraged us to seek out a neurological assessment. i was frustrated bc i wondered how much progress could one expect to see in two weeks?? but looking back on it, i'm glad it was recommended.

ruby is still not waking. she will be 22 months in 10 days. she takes steps less than she used to, but still does sometimes. we have had her fitted for SMO's, an orthotic that gives her more stability in her ankles & helps her to stop pronating her feet as much. she has made progress with them, in some ways.

it's funny. when ruby first started PT & people asked me about her progress, i thought "well, she's still not walking", so no progress so far. but this week in therapy, we (myself & her therapist) were talking about how much more ruby squats, how she will stand up for 10 seconds & not fall, how her core muscles are much stronger. it's these small skills that other parents take for granted. it is so hard for me to watch other kids just stand up & take a step, catch themselves from falling over. literally, i could BLOW in ruby's face when she's standing and she'd fall over.

why? why? WHY?? why do i have to learn some bullshit life lesson about being grateful that ruby's not in a worse situation? or that i should be ok with this bc this is the life that's been dealt to her? that's crap. she's a little girl. with no reason to have to face struggle.

but here we are. almost 22 months & ruby can't walk. if i am being honest, she definitely is not walking as much as she used to. this? it kills me. there were days that i felt so defeated. responsible for her lack of progress & worn out bc I spend every minute of our lives trying to make whatever activity she is doing into something that's therapeutic.

i don't remember when it changed; my attitude. maybe it was just before christmas. i realized ruby's other development was not slowing down. in fact, she is soaring ahead. we have conversations in the car that are basically comprehensible (to me, that is). she is testing limits. she's learning her colors and shapes. she's typical. and she's HAPPY.

what more can i ask for? she's a happy kid. she sees other kids in her daycare walking & running and she wants to, too, but she doesn't get upset about it. she gets from point A to point B just fine & she is like any other 22 month old other than the fact that she doesn't walk. i know i have to enjoy ruby, where she is at. her neurology appointment is on january 22nd. my guess is that we will move forward with ruling out muscular dystrophies. hoping those won't come back positive. my hope is that she will end up being diagnosed with congenital hypotonia, meaning she has low muscle tone & we will keep working on supporting her until she makes more progress.

so, wow. this has been a long post. i knew it would be. it's a lot to get out. as a parent, i never imagined my daughter or i would have to experience this. no one else in my family has gone through this. i had no reason think i would ever experience anything like this. but here we are. sitting with this experience, letting it settle with us, and pass as it may. finally finding some sort of peace and acceptance. i don't know what this journey brings, but i do find solace in the sentiment that "it goes on" no matter what. i don't know what power there is out there that's controlling this all, but i know i'm not the first to go through it and i won't be the last. there's something comforting in that.

thank you for letting me get this out. to the few people that read this, thanks. i have been a fool to bottle it all up for so long.

i will, of course, update as anything new re: ruby's progress occurs. until then, i will keep blogging about life as we know it: the perfect refrain.

02 January 2013

wordless-ish wednesday: don't get used to this. you're not even 2.

i waited to paint your nails. it was a "girl-y" mom & daughter thing i wanted to do. and you looked so freaking cute. but, also, i tweaked out a bit. like this...

nail polish will not be worn outside the house for several years. you are not allowed to wear make up until junior high & even then it's lip gloss and clear mascara only. no heels until high school. don't even utter the word "stiletto" to me until you're paying your own rent. and you can buy a two-piece swimsuit when you have your acceptance letter to college.

(lastly, i expect you to do all these things behind my back. please keep it to yourself until you're well passed the age of 25 & i am able to see for myself that i had nothing to worry about all these years.)

i love you, little lady.

ps) not so wordless this wednesday, eh? big emphasis on the "ish" today. ;)

01 January 2013

with resolve

so, i've never actually been serious about setting new year's resolutions for myself. but for some reason, this year i feel motivated to do so. and i want to be specific about my plan to carry out said resolutions because otherwise by january 10th i'll be eating cheesecake by the pound, wallowing in anxiety, and will have missed the deadline to sign up ruby for swimming lessons. (again)

so, here goes...

1. i would like to do a cardio workout 3 times a week and do some strength training 3 times a week. T bought me a kinect for the xbox & i have already tried out zumba and another fitness game he got me. so far, i really like them. it's convenient & fun. win and win. i have a super cool planner and want to schedule out my workout sessions in it.

2. menu plan. i want to cut out us eating out so much and buying convenience food at the end of the day bc i don't have a plan. this is another thing that i will use my planner for, as there's a handy dandy menu planning/grocery column.

3. get back to using the cash envelope system for anything other than bill paying basic things (like car loan, student loan, credit cards, cable & electric, etc). all other items in the budget, we will pay for in cash. we started this system last summer and it worked great. but after T's mom passed, i didn't keep on top of it and things got a little out of our normal routine. but i am going to get it back in order. we save a ton of money using that system.

4. worry less/blog more. i am putting these together because part of the problem that arises when i start worrying is that i don't DO anything with the worry and it just keeps eating away at my energy, my focus, and my hope. but blogging helps. it helps to get it out there and out of my head. i also plan on talking to people more about anxieties i'm having instead of thinking i'm bothering people or afraid to admit my fears. i plan on making a blog schedule in my planner (i know, my planner is legit!) in general, i'd like to blog at least three times a week. feel free to call me out on that if you don't see me around these parts for several days. ;)

5. DO more with ruby & T. more than just the usual brunch on sunday and trips to target. (not that those two activities will be going anywhere.) but i'd like to add in activities like going swimming, maybe camping (we have this kick ass tent that we have never even opened!), go see a drive-in movie, pick strawberries, take bike rides together. you get the idea. just DO.

6. get pregnant (maybe even actually have a baby!) i won't go into detail on my strategies for accomplishing this task. ;) you're welcome.

i think this covers the big ticket items that i want to focus on this year. don't wish me luck, instead wish me motivation, resolve, and stellar follow-through skills. (oh, and T, you can crack down on me if you see me slipping. thanks, amigo!)

happy 2013, folks! :)