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.
27 January 2013
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.
*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.)
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.
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
breathe.
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.
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!
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!
Subscribe to:
Posts (Atom)