I've really been slacking on this whole blogging thing. "Extra" stuff required by our state for teachers has sort of ruined typing long things for me ;) Even fun things like a blog sort of seems like a chore after going through all that, and I am still not done. Yet here I am, preferring to write this instead of working on that. Remind me of this as I am complaining and kicking myself for being a procrastinator two weeks from now!
Callista had a wonderful Christmas with family and this was the first year she truly "got it" when it came to opening gifts. She was excited about the paper and she knew that there would be something in there for her when she was finished. She was less than pleased when she got something and then we took it away to give her another gift! Overall, her favorite thing now is a band set, complete with maracas and a tambourine which combined make one heck of a drum set. We chose to separate all of our celebrations with family to avoid overwhelming Callie and it was a huge success. She was happy at each one and really enjoyed herself.
Over winter break, Callista was also able to do something new. At the last feeding clinic, we got approval to up her calories and puree our own dinner at home. It's been very exciting for her to try new foods. So far, she's been a big fan of everything! Chicken fingers, roast beef and potatoes, turkey sandwiches, and sloppy joes. The girl even had her first taste of Subway :) With her birthday coming up, I cannot wait to puree some cake for her. It will be the first time that she's ever been able to truly try her birthday cake.
Callista is making a lot of progress in her speech skills. She's caught on that if she names and item we will get it for her. It's a good thing and a bad thing! She eventually just names each item she knows in rapid succession and we don't actually get to play with anything... But I have waited a long time to hear her tell me her wants and needs, so I'll continue to play along whenever she wants. She loves Doc McStuffins, Sofia the First, Elsa, and the color pink. Just to prove she's a typical small human, she demands her own TV shows and has tried to change her mind on her birthday them from Sofia to Elsa (sorry kid, Elsa can wait until next year!).
I'll be posting pics from her 4th birthday soon!!
Callista
Showing posts with label spina bifida. Show all posts
Showing posts with label spina bifida. Show all posts
Saturday, January 16, 2016
Thursday, July 30, 2015
Fluffy Brains & Babies
I know what you're thinking! That title sounds like some knockoff zombie film. I assure you, there's no guts and gore in this post, pinkie swear!
As a mother to a newly diagnosed unborn baby, I was obsessed with numbers. Statistics, percentages, measurements of amniotic fluid pockets. The numbers that meant the most to me were how big Callista's ventricles were. The magical number falls between 6-10mm for ventricle size. Before fetal surgery, Callie was measuring at 12mm (an indicator of hydrocephalus and spina bifida). We hoped to maintain or decrease this number back to "magical range" but it didn't happen for us.
I cringed at every appointment when they measured my baby's head and ventricles during our weekly ultrasounds. Every time, that number slowly increased. 20mm... 32mm.... 41mm.... And every time, I continued to imagine the damage being caused to my poor girl's brain. I mean, having your brain squished so tight around the inside of your skull cannot be good, right?! And yet, I was reassured by my doctor and several other SB mommies that brain damage does not go hand in hand with our little ones. I didn't believe them. As Callista's ventricles climbed to the high 40's, low 50's in the week before she was born, I was a nervous wreck. Especially after seeing other mom's listing numbers in the 20's and showing their panicked state. Yes, other moms are obsessed with those numbers too! 20's?!?!?! I wanted to go back to the 20's!
Now, I've had about three years to calm down about numbers and I've learned not to ask unless completely necessary (which is, like.... never). Numbers mean nothing, but the old saying "A picture is worth a thousand words" rings true. Let's rephrase that to being worth a thousand measurements. These pictures are from Callista's MRI at one day old, and again from this past Monday.
*A mini MRI education session: The brain is supposed to be gray. All that white is the spinal fluid built up in her head from the flow being interrupted due to spina bifida. That weird looking black spot is where her shunt valve is, so the MRI cannot see through it.*
Look at that big, fluffy brain! That is some nice looking brain tissue if I do say so myself. When someone tells you that your baby's skull can accommodate the additional fluid, they aren't delusional. Our little ones are so resilient and I hope these photos give peace to someone who is worrying about the same numbers I once did.
As a mother to a newly diagnosed unborn baby, I was obsessed with numbers. Statistics, percentages, measurements of amniotic fluid pockets. The numbers that meant the most to me were how big Callista's ventricles were. The magical number falls between 6-10mm for ventricle size. Before fetal surgery, Callie was measuring at 12mm (an indicator of hydrocephalus and spina bifida). We hoped to maintain or decrease this number back to "magical range" but it didn't happen for us.
I cringed at every appointment when they measured my baby's head and ventricles during our weekly ultrasounds. Every time, that number slowly increased. 20mm... 32mm.... 41mm.... And every time, I continued to imagine the damage being caused to my poor girl's brain. I mean, having your brain squished so tight around the inside of your skull cannot be good, right?! And yet, I was reassured by my doctor and several other SB mommies that brain damage does not go hand in hand with our little ones. I didn't believe them. As Callista's ventricles climbed to the high 40's, low 50's in the week before she was born, I was a nervous wreck. Especially after seeing other mom's listing numbers in the 20's and showing their panicked state. Yes, other moms are obsessed with those numbers too! 20's?!?!?! I wanted to go back to the 20's!
Now, I've had about three years to calm down about numbers and I've learned not to ask unless completely necessary (which is, like.... never). Numbers mean nothing, but the old saying "A picture is worth a thousand words" rings true. Let's rephrase that to being worth a thousand measurements. These pictures are from Callista's MRI at one day old, and again from this past Monday.
Look at that big, fluffy brain! That is some nice looking brain tissue if I do say so myself. When someone tells you that your baby's skull can accommodate the additional fluid, they aren't delusional. Our little ones are so resilient and I hope these photos give peace to someone who is worrying about the same numbers I once did.
Saturday, May 2, 2015
A Day in the Life of Callista
Ever wonder what it's like to care for Callista or see the world from her eyes? In celebration of her being home from the NICU for three years, here's how I imagine she sees things...
Typical Weekend (we like weekends, no appointments!)
7:00am- It's light out. It's definitely time to wake up. I see that my mother is still trying to sleep in, but it's light out. So I will yell every word I know how to say until she finally caves in. I can't move myself or entertain myself so I depend on this lady every moment of the day, even when she's tired! Don't worry though, I know she can't be mad when she sees my smiling face and I say "Hi Mama". Gets her every time!
7:15am- Mom gets me cleaned up and dressed. I like clothes, I like to laugh at them and have them covering my face even though I know that's not where they belong. I can't help mommy get me dressed since I don't know how to make my arms or legs work that way, but I try my best to push them through. My mom keeps me stylin' so I don't mind! I enjoy getting my teeth brushed, but my hair is a different story. No one can get it right, so I cry and I cry and say "There ya go!" (code for: give me that!) until someone hands me my own comb. Sure, most people might not brush their face, but it works for me!
8:00am- It's med time! I know this because I recognize what syringes are, and I am thoroughly convinced they are all water. I am also a huge help to my mommy and show her this by demanding to hold syringes as she finishes. After all, who else will work hard to put two syringe tips together over and over and over again? Mommy does that part wrong. If the syringes aren't in my hands fast enough, I am sure to throw a fit until I get what I want. Hey, that's what happens when you lack language skills. Everyone caves in and gets you what you want if you yell long enough!
9:00am- I've been saying "eat" and "hungry" every five seconds for the last half hour, so it's about time this woman feeds me. Apparently I am on a "strict schedule", whatever that means! It's finally time for me to get some real food. This tube stuff is overrated. I mean, I can't even taste it. And if I could, it doesn't exactly smell like I'd like it. But the food in the little jars, that's what I'm talking about! I'd like to eat the whole jar, but my tummy doesn't let me. Mommy usually makes me stop at 1/2 or 3/4 of a jar so I don't puke. I mean, I try to puke all the time, I don't know what the big deal is.... Sometimes I even make the adults run like crazy to grab a tube and vent me (take the air bubbles out of my stomach). Sometimes there's a need for it, and sometimes I am just being rotten. Hehe!
So now we've got some free time. Since I can't move myself, mommy helps me go between my chair, the floor, and my playmat. Of course, we get plenty of lap time in as well, because I like to cuddle (when it's my idea). Even though I am three, I can't play with toys like most three year olds do. I need mommy to hold things for me and help me move my hands and arms where I want them to go. I have mastered making my Elsa doll sing. I do it over and over. I can tell mom likes it because she makes the best faces after the fourth or fifth time "Let it Go" has played :)
I've heard from several folks that my "core muscles" are getting stronger and I work hard at holding myself up, but some support from my special chair and my favorite lady in the world always works too! I've been trying hard to control my wheelchair too, but our house isn't made for the wide open spaces I need right now. We try our best to not run into things, but we need a room downstairs just for me! We've been working on raising money for that since I cannot use the rooms upstairs in our house. On the plus side, it's been what they call "nice" outside lately. Personally, I rather enjoy having wind blow up my nose and I open my mouth to taste it. And rain, rain is so much fun but mom never lets me hang out in it. We practice using the chair outside, which is much easier. I can go wherever I want. Sometimes I go too fast and mommy chases me. It's funny. I like to follow the cats around, and they love it (read; they are terrified but too stupid to stay out of the way).
I also love to swing. I tell mommy "outside" and we go swing on the porch. I like to eat the wind and relax in the sunshine. I'd really like to take a nap in my swing, but no one else seems to go for that idea. In fact, that's pretty much the only place I would willingly take a nap. I put up quite the fight in any other spot!
1:00p- Yay!! It's time to eat again! This time, I get some food through my tube AND some of that jar goodness too. I hope she feeds me fast enough. Otherwise, I will be sure to let her know by yelling "hungry!" and "more bite!". And don't you dare eat something in front of me, because I will be demanding a bite of that too, even if I cannot logically eat it (breadsticks anyone?!). I also get more meds at this time. They try to sneak those in there, but I am a smart cookie and I know what those little syringes do. But there's food, so I let it slide.
1:30p- Speaking of naps, it's now time for me to avoid one.
2:30p- Okay, I caved and slept. But I put up a valiant effort before finally succumbing to the tiredness that is called Three Years Old. I wasn't really tired, I swear. Now it's time to get strapped in my stander. It's this thing that looks a little like a torture device but it's awesome. It helps me stand up straight and play upright. Even though I cannot stand on my own legs, I still need to put weight on them so I can grow. My stander helps me bear weight through my hips, legs, and feet. (Here's a good read on Standers and why they are important. Not that I can read or anything ;) http://physical-therapy.advanceweb.com/Features/Articles/Embracing-Gravity.aspx) Since I've been using my stander regularly, my feet have grown! I still wear size 4 teeny tiny shoes. Since my feet are shaped weird due to my muscle tone and not using them, mom has a hard time finding cute shoes to fit my little piggies. While I am in my stander, I like to be wheeled around the room to move, it's fun to pretend to dance. I like to play with toys on my tray and throw them on the ground for someone to pick up.
3:00p- This one is a little personal.... Because of my spinal cord damage, I have neurogenic bowel and bladder. That means that those parts of me don't work right and I need a little help. I have a vesicostomy (a hole under my belly button) to help my urine drain into my diaper. This way, it doesn't reflux into my kidneys and scar them. I guess these kidney things are important, because I get mine looked at pretty frequently. I don't have the ability to go #2 on my own, so every day I get a suppository to keep my belly from being in pain.
Insert more free time here. I will probably request "a book" several times. I love to look at books. I want to turn my own pages though, even if whoever is reading isn't actually done with that page. If it's nice, we will go outside again to swing or drive my wheelchair. Or if I am feeling cranky and don't want to play with anyone, I will lay in my playmat and bang some things around. My mom does my hand and leg stretches to work my muscles and get them loosened up. I might do tummy time again. Or I might smash my face into the mat and pretend I don't know how, I haven't decided yet. I will probably sing my ABC's and watch some Disney Junior. That Sophia the First really knows what's up! I like that girl!
5:00p- Woo hoo! It's eating time again! This time, I get water through my tube and more jar food. It goes about the same as before. Better shovel it in fast mom, or I will complain to dad. And whoever else will listen to me whine about eating and being hungry two minutes after I've already eaten. This also means it's time to see Daddy before he goes to work. I love that guy. And I cry when he leaves, because in my mind, I should get to keep everyone I know and love 24/7. Who else will make funny sounds at me and talk nonsense words?!
7:00p- The lights are dimmed and I know something is up. This lady is going to try to make me go to sleep!! The big bag of night time food is on my pole and it's hooked to my tube. Ah man, maybe if I pretend to be interested in these toys she will let me stay up. Must. Stay. Awake. Cuddle time is nice though, I like to snuggle with my mom while I pretend to not be sleepy.
10:00p- Mommy tries not to wake me up when she changes my diaper on last time and gives my night time medicines. I turn on my cuteness and sing Twinkle Twinkle in my sleep. We get one more good night cuddle in and I get my beauty rest. You can't look this adorable every day without it! Night-night everyone <3
Typical Weekend (we like weekends, no appointments!)
7:00am- It's light out. It's definitely time to wake up. I see that my mother is still trying to sleep in, but it's light out. So I will yell every word I know how to say until she finally caves in. I can't move myself or entertain myself so I depend on this lady every moment of the day, even when she's tired! Don't worry though, I know she can't be mad when she sees my smiling face and I say "Hi Mama". Gets her every time!
7:15am- Mom gets me cleaned up and dressed. I like clothes, I like to laugh at them and have them covering my face even though I know that's not where they belong. I can't help mommy get me dressed since I don't know how to make my arms or legs work that way, but I try my best to push them through. My mom keeps me stylin' so I don't mind! I enjoy getting my teeth brushed, but my hair is a different story. No one can get it right, so I cry and I cry and say "There ya go!" (code for: give me that!) until someone hands me my own comb. Sure, most people might not brush their face, but it works for me!
8:00am- It's med time! I know this because I recognize what syringes are, and I am thoroughly convinced they are all water. I am also a huge help to my mommy and show her this by demanding to hold syringes as she finishes. After all, who else will work hard to put two syringe tips together over and over and over again? Mommy does that part wrong. If the syringes aren't in my hands fast enough, I am sure to throw a fit until I get what I want. Hey, that's what happens when you lack language skills. Everyone caves in and gets you what you want if you yell long enough!
9:00am- I've been saying "eat" and "hungry" every five seconds for the last half hour, so it's about time this woman feeds me. Apparently I am on a "strict schedule", whatever that means! It's finally time for me to get some real food. This tube stuff is overrated. I mean, I can't even taste it. And if I could, it doesn't exactly smell like I'd like it. But the food in the little jars, that's what I'm talking about! I'd like to eat the whole jar, but my tummy doesn't let me. Mommy usually makes me stop at 1/2 or 3/4 of a jar so I don't puke. I mean, I try to puke all the time, I don't know what the big deal is.... Sometimes I even make the adults run like crazy to grab a tube and vent me (take the air bubbles out of my stomach). Sometimes there's a need for it, and sometimes I am just being rotten. Hehe!
So now we've got some free time. Since I can't move myself, mommy helps me go between my chair, the floor, and my playmat. Of course, we get plenty of lap time in as well, because I like to cuddle (when it's my idea). Even though I am three, I can't play with toys like most three year olds do. I need mommy to hold things for me and help me move my hands and arms where I want them to go. I have mastered making my Elsa doll sing. I do it over and over. I can tell mom likes it because she makes the best faces after the fourth or fifth time "Let it Go" has played :)
I've heard from several folks that my "core muscles" are getting stronger and I work hard at holding myself up, but some support from my special chair and my favorite lady in the world always works too! I've been trying hard to control my wheelchair too, but our house isn't made for the wide open spaces I need right now. We try our best to not run into things, but we need a room downstairs just for me! We've been working on raising money for that since I cannot use the rooms upstairs in our house. On the plus side, it's been what they call "nice" outside lately. Personally, I rather enjoy having wind blow up my nose and I open my mouth to taste it. And rain, rain is so much fun but mom never lets me hang out in it. We practice using the chair outside, which is much easier. I can go wherever I want. Sometimes I go too fast and mommy chases me. It's funny. I like to follow the cats around, and they love it (read; they are terrified but too stupid to stay out of the way).
I also love to swing. I tell mommy "outside" and we go swing on the porch. I like to eat the wind and relax in the sunshine. I'd really like to take a nap in my swing, but no one else seems to go for that idea. In fact, that's pretty much the only place I would willingly take a nap. I put up quite the fight in any other spot!
1:00p- Yay!! It's time to eat again! This time, I get some food through my tube AND some of that jar goodness too. I hope she feeds me fast enough. Otherwise, I will be sure to let her know by yelling "hungry!" and "more bite!". And don't you dare eat something in front of me, because I will be demanding a bite of that too, even if I cannot logically eat it (breadsticks anyone?!). I also get more meds at this time. They try to sneak those in there, but I am a smart cookie and I know what those little syringes do. But there's food, so I let it slide.
1:30p- Speaking of naps, it's now time for me to avoid one.
2:30p- Okay, I caved and slept. But I put up a valiant effort before finally succumbing to the tiredness that is called Three Years Old. I wasn't really tired, I swear. Now it's time to get strapped in my stander. It's this thing that looks a little like a torture device but it's awesome. It helps me stand up straight and play upright. Even though I cannot stand on my own legs, I still need to put weight on them so I can grow. My stander helps me bear weight through my hips, legs, and feet. (Here's a good read on Standers and why they are important. Not that I can read or anything ;) http://physical-therapy.advanceweb.com/Features/Articles/Embracing-Gravity.aspx) Since I've been using my stander regularly, my feet have grown! I still wear size 4 teeny tiny shoes. Since my feet are shaped weird due to my muscle tone and not using them, mom has a hard time finding cute shoes to fit my little piggies. While I am in my stander, I like to be wheeled around the room to move, it's fun to pretend to dance. I like to play with toys on my tray and throw them on the ground for someone to pick up.
3:00p- This one is a little personal.... Because of my spinal cord damage, I have neurogenic bowel and bladder. That means that those parts of me don't work right and I need a little help. I have a vesicostomy (a hole under my belly button) to help my urine drain into my diaper. This way, it doesn't reflux into my kidneys and scar them. I guess these kidney things are important, because I get mine looked at pretty frequently. I don't have the ability to go #2 on my own, so every day I get a suppository to keep my belly from being in pain.
Insert more free time here. I will probably request "a book" several times. I love to look at books. I want to turn my own pages though, even if whoever is reading isn't actually done with that page. If it's nice, we will go outside again to swing or drive my wheelchair. Or if I am feeling cranky and don't want to play with anyone, I will lay in my playmat and bang some things around. My mom does my hand and leg stretches to work my muscles and get them loosened up. I might do tummy time again. Or I might smash my face into the mat and pretend I don't know how, I haven't decided yet. I will probably sing my ABC's and watch some Disney Junior. That Sophia the First really knows what's up! I like that girl!
5:00p- Woo hoo! It's eating time again! This time, I get water through my tube and more jar food. It goes about the same as before. Better shovel it in fast mom, or I will complain to dad. And whoever else will listen to me whine about eating and being hungry two minutes after I've already eaten. This also means it's time to see Daddy before he goes to work. I love that guy. And I cry when he leaves, because in my mind, I should get to keep everyone I know and love 24/7. Who else will make funny sounds at me and talk nonsense words?!
7:00p- The lights are dimmed and I know something is up. This lady is going to try to make me go to sleep!! The big bag of night time food is on my pole and it's hooked to my tube. Ah man, maybe if I pretend to be interested in these toys she will let me stay up. Must. Stay. Awake. Cuddle time is nice though, I like to snuggle with my mom while I pretend to not be sleepy.
10:00p- Mommy tries not to wake me up when she changes my diaper on last time and gives my night time medicines. I turn on my cuteness and sing Twinkle Twinkle in my sleep. We get one more good night cuddle in and I get my beauty rest. You can't look this adorable every day without it! Night-night everyone <3
Sunday, November 9, 2014
You Can't Sit With Us!!!
Wrong. Women (and men, although in my opinion, not nearly so much) deal with this at work, at the gym, and even online. What's worse, is that special needs parents are sooooooo entirely guilty of this also and don't even know it! I am guilty too. I am guilty of thinking to myself "Quit your whining about ________, we have it so much worse". I'd never actually say that to anyone, but I totally think it. I recognize it's wrong, which is step one to solving the problem, right? You know what else we do? Anytime someone vents, we automatically say "Oh yeah, Callie did that and, and, and." Wait, did I just change the subject about your child to my child? Yep, I did. And I for one am sorry for the habit. It's one I've worked very hard to break. Instead, I remind myself to say "I am so sorry you're going through this" because that's what those moms want to hear, what they need to hear. Not some competition about who has the neediest child, who had the most surgeries, etc.
I read through some comments today referring to cliques within the special needs community and I can't say I disagree. I've personally never felt like I fit in anywhere, but everyone has been pleasant to Callista and to me. But there's always a sense of importance assigned to some, and for others we just hang out in the background. Some have their questions ignored, others get ten thousand "likes" on their photo *exaggerated for emphasis*(not that that defines you, hopefully!). How the hierarchy is decided is beyond me, all I know is I'm not in it ;)
I know it's hard to not worry about what others think of you, and at this very moment, I am doing it! I am doubting whether or not to publish this blog for fear of offending someone (none meant) or someone automatically assuming it's about them (it's not about you, I promise). It's just based on observations I've made after seeing a friend feel abandoned online by women who should be building each other up instead of making frienemies. I challenge you, female members of society, to work on complimenting your fellow women and practice your "reflective listening" even if it's only online.
As for me, I compliment every single SN mother who has ever touched my life in some way. I know without you, without those groups, without your many beautiful blogs and pictures, I wouldn't know half the things I know today and my heart (and friend list!) would be very empty without you.
Everyone can come sit at my table!
Sunday, October 5, 2014
Is Three Years Enough?
Three years is a long time for some things, but not long enough for others. If a pair of boots lasts you three years, you're elated. If you're stuck in a business meeting you don't want to be in, it feels like three years.
You'd think after three years, diagnosis day would become a little foggy, some of the details would start to slip. You'd think I wouldn't remember exactly what I was wearing when I went to that appointment. There aren't many moments in life when you remember things so vividly, but I remember diagnosis day word for word, picture for picture, so clearly. It terrifies me to know I was supposed to go to that appointment alone. For me, three years is not long enough to forget.
I spend a lot of my time advocating not just for Spina Bifida, but for children with disabilities of all kinds. I don't want other mothers to be treated the way that we were on diagnosis day and I want our children to be treated as equals, as people. I hear horror stories of mothers and fathers being pressured to terminate pregnancies of "vegetable children" and I look at my beautiful little girl and I am devastated that someone as "educated" as a doctor could be so uneducated about Spina Bifida and other birth defects.Although we were never pressured to terminate, it wasn't a warm and fuzzy experience either! Parents do have a right to be informed that life may be hard, but they have a right to current and realistic information, not just the worst case scenario. I don't ever want a parent to be given so little information and shoved out the door as we were because no one wants to deal with you. I don't want women to have doctors who could care less about the outcome of her pregnancy or how her child is doing now. There is a fine line between being professional and showing that you're a human being too.
It seems a little silly, but I haven't worn the outfit I had on since the day we had the ultrasound that changed our lives forever. It hung in my closet and I'd see it every day and think "someday". But last month, I gave it to goodwill because I realized it was never going to be worn again. Hopefully that is just the beginning of making room for the positive in our lives.
In honor of Spina Bifida Awareness month, please join us on Callista's Facebook Group for a fact a day and on our fundraising event.
You'd think after three years, diagnosis day would become a little foggy, some of the details would start to slip. You'd think I wouldn't remember exactly what I was wearing when I went to that appointment. There aren't many moments in life when you remember things so vividly, but I remember diagnosis day word for word, picture for picture, so clearly. It terrifies me to know I was supposed to go to that appointment alone. For me, three years is not long enough to forget.
I spend a lot of my time advocating not just for Spina Bifida, but for children with disabilities of all kinds. I don't want other mothers to be treated the way that we were on diagnosis day and I want our children to be treated as equals, as people. I hear horror stories of mothers and fathers being pressured to terminate pregnancies of "vegetable children" and I look at my beautiful little girl and I am devastated that someone as "educated" as a doctor could be so uneducated about Spina Bifida and other birth defects.Although we were never pressured to terminate, it wasn't a warm and fuzzy experience either! Parents do have a right to be informed that life may be hard, but they have a right to current and realistic information, not just the worst case scenario. I don't ever want a parent to be given so little information and shoved out the door as we were because no one wants to deal with you. I don't want women to have doctors who could care less about the outcome of her pregnancy or how her child is doing now. There is a fine line between being professional and showing that you're a human being too.
It seems a little silly, but I haven't worn the outfit I had on since the day we had the ultrasound that changed our lives forever. It hung in my closet and I'd see it every day and think "someday". But last month, I gave it to goodwill because I realized it was never going to be worn again. Hopefully that is just the beginning of making room for the positive in our lives.
Sunday, August 10, 2014
Summer Progress
This summer has been good to us. With the exception of one little med flight incident and a two day stay, we have somehow managed to stay OUT of the hospital and away from surgeries for my entire break. That is quite the accomplishment when you revisit our track record.
Callista has enjoyed mommy being home more and we've made some progress as well. She is working hard to hold her head up and is able to hold for longer periods of time with help balancing her body. Tummy time has gotten easier and there are less tears and fighting. She's grown enough that we had to get her braces sized up a little. She is also learning to mimic several more words and is quickly picking up sounds. She is opening her hands more and within the last two months has finally started purposefully reaching for toys and objects.
Here in a few weeks her wheelchair will finally be ready. We are anxious to get it, to finally give our girl the freedom she needs and deserves. We are hoping with the ability to move, she will develop cognitively too. With talks of school starting, it makes me nervous to send her somewhere with little to no language skills, unable to fend for herself. I know how cruel kids can be and I don't know that I am ready to send her into that situation just yet.
I think since starting her on ningxia red we've seen the most progress out of her in a very long time. I'm glad something so simple and natural can be what she needs for that extra boost.
Callista has enjoyed mommy being home more and we've made some progress as well. She is working hard to hold her head up and is able to hold for longer periods of time with help balancing her body. Tummy time has gotten easier and there are less tears and fighting. She's grown enough that we had to get her braces sized up a little. She is also learning to mimic several more words and is quickly picking up sounds. She is opening her hands more and within the last two months has finally started purposefully reaching for toys and objects.
Here in a few weeks her wheelchair will finally be ready. We are anxious to get it, to finally give our girl the freedom she needs and deserves. We are hoping with the ability to move, she will develop cognitively too. With talks of school starting, it makes me nervous to send her somewhere with little to no language skills, unable to fend for herself. I know how cruel kids can be and I don't know that I am ready to send her into that situation just yet.
I think since starting her on ningxia red we've seen the most progress out of her in a very long time. I'm glad something so simple and natural can be what she needs for that extra boost.
Friday, June 27, 2014
Oil Update
**Pssssst! In case you missed it, go check out my very first guest blog on NanaHood.com!**
I am so impressed with Callista's progress since beginning essential oils with her. I will be the first to admit, I weren't sure if they were full of crap or actually effective when I signed up to order them. But, I was also a desperate mommy who was willing to try anything. Wow, I am glad I did...
We started off pretty strong in applying oils, but had to back off due to other issues that coincidentally happened around the same time. I switched from topical application to simply diffusing oils that Callista needed. We diffuse peppermint, lavender, and myrrh every evening at bed time. Since we started in February, Callista has improved her speech skills more than I can describe. You've seen the videos on her page. She went from saying ONE word, to gaining at least one new word weekly. She had no interest in sitting or playing with toys, and now she is making efforts to sit herself up and heaven forbid if you forget to put a toy in front of her. In occupational therapy, she has made more progress over the last few months than she did in the YEAR prior to starting oils. Her hands are open more than they are closed and she is reaching and grabbing (including hair and earrings, by the way!).
I can't deny that it sounds crazy. But there is nothing else different that we have been doing for Callista other than using Young Living Essential Oils. Sometimes it is hard to do the protocols that I'd like to do, because Callista can be quite uncooperative and because many oils cannot be put into a g-tube. Today I learned that ningxia red can be used with a tubie, so of course we started that! I cannot wait to see what results that gets.I look forward to transitioning her to topical applications and adding in frankincense back into her daily regimen. This girl is finally making progress in something!
Speaking of progress, we received the magical letter in the mail saying her wheelchair has been APPROVED!! We've been waiting nervously since the beginning of May to see what would happen and it's such a relief to finally see it in writing. Now to work on making our home her home and allowing her to be as independent as possible. I look forward to seeing her flourish when she realizes she can take herself places (my walls and the dog are probably not as excited for mobile Callie!).
Thanks to all our friends and supporters for donating items to the benefit, sharing our event on facebook, and using our donation link at the top of Callista's blog. We appreciate you so much <3. We've got a long way to go in our fundraising goal and your efforts have gotten us that much closer. WE LOVE YOU!
I am so impressed with Callista's progress since beginning essential oils with her. I will be the first to admit, I weren't sure if they were full of crap or actually effective when I signed up to order them. But, I was also a desperate mommy who was willing to try anything. Wow, I am glad I did...
We started off pretty strong in applying oils, but had to back off due to other issues that coincidentally happened around the same time. I switched from topical application to simply diffusing oils that Callista needed. We diffuse peppermint, lavender, and myrrh every evening at bed time. Since we started in February, Callista has improved her speech skills more than I can describe. You've seen the videos on her page. She went from saying ONE word, to gaining at least one new word weekly. She had no interest in sitting or playing with toys, and now she is making efforts to sit herself up and heaven forbid if you forget to put a toy in front of her. In occupational therapy, she has made more progress over the last few months than she did in the YEAR prior to starting oils. Her hands are open more than they are closed and she is reaching and grabbing (including hair and earrings, by the way!).
I can't deny that it sounds crazy. But there is nothing else different that we have been doing for Callista other than using Young Living Essential Oils. Sometimes it is hard to do the protocols that I'd like to do, because Callista can be quite uncooperative and because many oils cannot be put into a g-tube. Today I learned that ningxia red can be used with a tubie, so of course we started that! I cannot wait to see what results that gets.I look forward to transitioning her to topical applications and adding in frankincense back into her daily regimen. This girl is finally making progress in something!
Speaking of progress, we received the magical letter in the mail saying her wheelchair has been APPROVED!! We've been waiting nervously since the beginning of May to see what would happen and it's such a relief to finally see it in writing. Now to work on making our home her home and allowing her to be as independent as possible. I look forward to seeing her flourish when she realizes she can take herself places (my walls and the dog are probably not as excited for mobile Callie!).
Thanks to all our friends and supporters for donating items to the benefit, sharing our event on facebook, and using our donation link at the top of Callista's blog. We appreciate you so much <3. We've got a long way to go in our fundraising goal and your efforts have gotten us that much closer. WE LOVE YOU!
Saturday, May 31, 2014
No Sugar-Coating Here
Lately, I have been noticing more and more a trend on the forums and groups I am in. There may be a SLIGHT obsession with walking. Every post I see is someone worrying about their child not walking as much, not walking as far, or not meeting milestones in order to walk. It's the normal expectation, and even with our not so normal (yet still very awesome) spina bifida lovelies, many of them can walk with some assistance. But there are some who don't...
I will admit, I am part of the problem, because I hesitate to post where Callista is developmentally, because I don't want to scare moms who have kids younger than her, or are still pregnant with their SB babies. When I was pregnant, I fully expected to have a daughter who would use a walker, need braces, etc. I never intended her to never walk, struggle to sit up, and have significant delays in all other areas. Because everyone in these groups always talks about how well their children are doing and that with time, your child will get there too. But sometimes they don't...
So why do people like me try to hide our babies like they are bad news no one wants to hear? Quite frankly, when I take a step back to write about it, I am embarrassed that I don't share more with these moms. It might be scary, but it's reality. Just because Callista doesn't do what she is suppose to doesn't mean her life is bad or she's anything less than wonderful. I guess I shouldn't say I hide her, because we are very public with our trials and celebrations. But I don't post often when people ask questions like "Anyone else's baby not sit up at nine months?!". Because she's two... and still struggling. And posts that go something like "Finally! At 18 months we've started pulling to stand!" yank at my heart, because at two, we're nowhere. Because sometimes it just doesn't happen.
But why don't I read about THOSE kids? Those babies just like mine exist out there somewhere, and I know that we are proud of the accomplishments, no matter how small. Why don't we post about those? Why don't we be honest with others and say "No, my child doesn't do that and probably never will"? For me, I think I don't say anything for fear it will be taken as negativity, when really it's just the truth for us. I'm not upset about our situation, just answering honestly. Just because she doesn't walk does not mean she's less valuable, nor will I spend all my time hyper-focused on that one part of my child. Let's stop sugar coating everything for everyone and show them even if we aren't "normal", we are still happy. And fabulous!
I will admit, I am part of the problem, because I hesitate to post where Callista is developmentally, because I don't want to scare moms who have kids younger than her, or are still pregnant with their SB babies. When I was pregnant, I fully expected to have a daughter who would use a walker, need braces, etc. I never intended her to never walk, struggle to sit up, and have significant delays in all other areas. Because everyone in these groups always talks about how well their children are doing and that with time, your child will get there too. But sometimes they don't...
So why do people like me try to hide our babies like they are bad news no one wants to hear? Quite frankly, when I take a step back to write about it, I am embarrassed that I don't share more with these moms. It might be scary, but it's reality. Just because Callista doesn't do what she is suppose to doesn't mean her life is bad or she's anything less than wonderful. I guess I shouldn't say I hide her, because we are very public with our trials and celebrations. But I don't post often when people ask questions like "Anyone else's baby not sit up at nine months?!". Because she's two... and still struggling. And posts that go something like "Finally! At 18 months we've started pulling to stand!" yank at my heart, because at two, we're nowhere. Because sometimes it just doesn't happen.
But why don't I read about THOSE kids? Those babies just like mine exist out there somewhere, and I know that we are proud of the accomplishments, no matter how small. Why don't we post about those? Why don't we be honest with others and say "No, my child doesn't do that and probably never will"? For me, I think I don't say anything for fear it will be taken as negativity, when really it's just the truth for us. I'm not upset about our situation, just answering honestly. Just because she doesn't walk does not mean she's less valuable, nor will I spend all my time hyper-focused on that one part of my child. Let's stop sugar coating everything for everyone and show them even if we aren't "normal", we are still happy. And fabulous!
Sunday, April 27, 2014
Ready for a Pink Throne (No, not THAT kind!)
This post will be full of random, because too many things are going on all at once, but never enough for a full post. Prepare for an ADHD moment:
Item #1: Stupid Infection
A few weeks ago, we took Callista to the ER because her oxygen numbers were low. She ended up having a kidney infection and was put on antibiotics. Lucky for us, for the first time ever we were allowed to be admitted in our own town. It was so nice being close to home for the few days she had to stay. It made things a lot easier. Of course, we haven't been admitted for a long time, so it was a little disappointing. After speaking with urology, they said that her UTI's are so infrequent now that they would not do anything different.
Item #2: Pink Wheelchairs
Callista got to try out a power wheelchair! She did great for it being her first time. It wasn't fitted specifically for her so she was able to get her gansta lean on, but overall she moved the chair back and forth and attempted to run over many toes, whether she knew it or not. I assumed I would be sad to see her in a chair, but I surprised myself. It has really sunk in that Callie isn't the walking kind of girl (walking is totally lame, anyway, right?) and I was SO happy to see her trying to move herself in the wheelchair. It isn't something that will confine her, it's something that is going to open up her world to so many new things. I had no tears, only a huge smile on my face. Next week, the reps are coming to our house to do a trial in the drive way and to inspect our home to ensure we are wheelchair ready. Callie's Papaw already made sure she was ready; our house now has a beautiful wheelchair ramp that is ready to go for Callie's pink chair. We settled to try the purple one, but you know that's not the one for us ;)
Item #3: The Third Annual Callista's Journey Benefit
It's time again! This year, our benefit will be held at Prophet's Park on July 27th from 11:00-2:00. We are still working out the details, but the date is set and the place is reserved! We are beginning to collect the Chinese and Silent Auction items now. I'm excited to share that aside from our paypal link on our blog, there is also an account for Callista's Journey set up at Century National Bank. Anyone can write checks directly to Callista's Journey, or stop in at any Century National Bank and donate as well. This year, our efforts are going into renovating our home for Callista's needs. We will be building on an additional handicap friendly bathroom and altering another room to become Callista's bedroom with plenty of room for all her therapy equipment. We are hoping once the shell is complete, our waiver will help with the inside, but those approvals are always iffy. We should be getting an estimate on the addition soon so we know where to set our goal!
Item #1: Stupid Infection
A few weeks ago, we took Callista to the ER because her oxygen numbers were low. She ended up having a kidney infection and was put on antibiotics. Lucky for us, for the first time ever we were allowed to be admitted in our own town. It was so nice being close to home for the few days she had to stay. It made things a lot easier. Of course, we haven't been admitted for a long time, so it was a little disappointing. After speaking with urology, they said that her UTI's are so infrequent now that they would not do anything different.
Item #2: Pink Wheelchairs
Item #3: The Third Annual Callista's Journey Benefit
It's time again! This year, our benefit will be held at Prophet's Park on July 27th from 11:00-2:00. We are still working out the details, but the date is set and the place is reserved! We are beginning to collect the Chinese and Silent Auction items now. I'm excited to share that aside from our paypal link on our blog, there is also an account for Callista's Journey set up at Century National Bank. Anyone can write checks directly to Callista's Journey, or stop in at any Century National Bank and donate as well. This year, our efforts are going into renovating our home for Callista's needs. We will be building on an additional handicap friendly bathroom and altering another room to become Callista's bedroom with plenty of room for all her therapy equipment. We are hoping once the shell is complete, our waiver will help with the inside, but those approvals are always iffy. We should be getting an estimate on the addition soon so we know where to set our goal!
Tuesday, March 25, 2014
Extraordinary Moms
Every mother has the gift of being awesome if they choose to do so. But some mothers are given an additional task of being more, of being extraordinary. They don't ask for it and when it's shoved upon them, it certainly doesn't seem like a gift at all. In fact, it can feel like your world is ending when you hear that something isn't quite right with your child, born or unborn. So here's my letter to those moms who've just had the title of extraordinary handed to them.
Extraordinary Mom,
You will be okay. I feel the need to say this first because it's short and to the point, and it's true. Sure, life has been shaken up for you and you'll need time to adjust, but you will survive. You will have to learn new things and your life will change forever. It might suck at times (any special needs mom who denies that is full of crap), but your good times will outweigh the bad ones. The key is to realize those moments are worth more to you before they even happen.
Thinking positive sounds lame and cliche; do it anyway. I know you can't help but to think through every single worst case scenario. Thinking positive doesn't mean you have to be happy about it, just that you can explore all the sides rather than just the dark one.
I also know at some point you're going to want to punch someone in the face for being all rainbows and sunshine when all you want to do is wallow in sadness. I wanted to smack the next person who told me "God only gives special children to special people". Barf. It is NOT okay to assault your friends and family, but it IS okay to be sad. Now, if someone tells you that you can't be sad.... Well, I might support punching that one.... But seriously though! Grieve. It's natural to mourn the loss of the baby you thought you were having. But while you grieve, remember that you're still having a beautiful baby, he or she is just different than the one you pictured.
Take a break from the research. As the Google Everything Queen, I get the urge to want to know every little thing about your child's diagnosis, connect with every stinkin' support group there is, ask every question under the sun, and get some definitive answers. It's awesome to be educated, it's not so awesome to be consumed by a diagnosis.
You are still YOU, so make some time for that. Do you like to sew? Scrapbook? Read? Do those things. Taking time for yourself will make you feel like yourself and not some zombie just going through the motions until your child is born. And even after your child is born, all babies need a happy, healthy mama. Sure, it's a little tougher to get away (heck, if my hair grows a few more inches before I can find a moment at the salon, I'll have ombre. That is still in style right?!) but even a short walk in the fresh air will do you some good.
I'm sure there's so much more that I can say to you, newly titled Extraordinary Mom.... But I will end with this: Know that you are never alone in your journey and you are loved. It's going to be hard but you will grow and learn and soon you'll have your own "normal".
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Of course, I have to end with a little update on Callie :) We have seen such amazing progress lately. Since starting Young Living Essential Oils.... We got our very first therapy progress report that actually showed IMPROVEMENT. Big deal in this house, we should have ordered a cake. Callie is making great strides in her speech skills.... We've heard a lot of new sounds since starting frankincense and I am more than impressed at this point. She can now hold onto two small, light toys and bang them together in front of her. Purposefully. WOW! She is beginning to balance herself while on her tummy, and her head control is getting better each day. She enjoys standing in her braces with assistance and is continuing to work on her trunk control. Of course, she continues to increase her cuteness to adorable ratio on a daily basis. If you'd like more info on joining our oil journey, come visit our facebook page or send me comment :)
Extraordinary Mom,
You will be okay. I feel the need to say this first because it's short and to the point, and it's true. Sure, life has been shaken up for you and you'll need time to adjust, but you will survive. You will have to learn new things and your life will change forever. It might suck at times (any special needs mom who denies that is full of crap), but your good times will outweigh the bad ones. The key is to realize those moments are worth more to you before they even happen.
Thinking positive sounds lame and cliche; do it anyway. I know you can't help but to think through every single worst case scenario. Thinking positive doesn't mean you have to be happy about it, just that you can explore all the sides rather than just the dark one.
I also know at some point you're going to want to punch someone in the face for being all rainbows and sunshine when all you want to do is wallow in sadness. I wanted to smack the next person who told me "God only gives special children to special people". Barf. It is NOT okay to assault your friends and family, but it IS okay to be sad. Now, if someone tells you that you can't be sad.... Well, I might support punching that one.... But seriously though! Grieve. It's natural to mourn the loss of the baby you thought you were having. But while you grieve, remember that you're still having a beautiful baby, he or she is just different than the one you pictured.
Take a break from the research. As the Google Everything Queen, I get the urge to want to know every little thing about your child's diagnosis, connect with every stinkin' support group there is, ask every question under the sun, and get some definitive answers. It's awesome to be educated, it's not so awesome to be consumed by a diagnosis.
You are still YOU, so make some time for that. Do you like to sew? Scrapbook? Read? Do those things. Taking time for yourself will make you feel like yourself and not some zombie just going through the motions until your child is born. And even after your child is born, all babies need a happy, healthy mama. Sure, it's a little tougher to get away (heck, if my hair grows a few more inches before I can find a moment at the salon, I'll have ombre. That is still in style right?!) but even a short walk in the fresh air will do you some good.
I'm sure there's so much more that I can say to you, newly titled Extraordinary Mom.... But I will end with this: Know that you are never alone in your journey and you are loved. It's going to be hard but you will grow and learn and soon you'll have your own "normal".
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Of course, I have to end with a little update on Callie :) We have seen such amazing progress lately. Since starting Young Living Essential Oils.... We got our very first therapy progress report that actually showed IMPROVEMENT. Big deal in this house, we should have ordered a cake. Callie is making great strides in her speech skills.... We've heard a lot of new sounds since starting frankincense and I am more than impressed at this point. She can now hold onto two small, light toys and bang them together in front of her. Purposefully. WOW! She is beginning to balance herself while on her tummy, and her head control is getting better each day. She enjoys standing in her braces with assistance and is continuing to work on her trunk control. Of course, she continues to increase her cuteness to adorable ratio on a daily basis. If you'd like more info on joining our oil journey, come visit our facebook page or send me comment :)
Monday, March 3, 2014
Two Week Oil Update, etc.
For two weeks now we've been using oils daily on Callista's feet. If I didn't see it for myself, I'd think it was crazy. But she has been adding new speech sounds faster than ever over these last few weeks (we've even missed therapy for three weeks!!!). I've also noticed that she consciously/purposely moves her feet much more than she ever has. I don't think we've seen HUGE strides just yet, but with these tiny steps already showing, I have a feeling great things are to come by continuing our oil journey.
In other news, I am sure most of you know that a few weeks ago, Callista had a seizure. She's never had one before so it was a scary thing for me. As soon as she woke up, she began twitching and it lasted about 15 minutes. We called the squad after we realized she wasn't stopping. Luckily she did not need meds to intervene, she stopped almost as soon as the ambulance arrived. After a trip to the local ER and then to NCH, her MRI showed her shunt was functioning fine, she did not have a fever, and there were no other causes that they could determine. This Wednesday, she has an EEG so if you could pray for good results that would be wonderful <3 For now, we have emergency meds and we hope it was just a one time deal.
In other news, I am sure most of you know that a few weeks ago, Callista had a seizure. She's never had one before so it was a scary thing for me. As soon as she woke up, she began twitching and it lasted about 15 minutes. We called the squad after we realized she wasn't stopping. Luckily she did not need meds to intervene, she stopped almost as soon as the ambulance arrived. After a trip to the local ER and then to NCH, her MRI showed her shunt was functioning fine, she did not have a fever, and there were no other causes that they could determine. This Wednesday, she has an EEG so if you could pray for good results that would be wonderful <3 For now, we have emergency meds and we hope it was just a one time deal.
Sunday, February 16, 2014
Bringing Frankincense and Myrrh to the Party!
Today is day one of our trial of essential oils for Callista. I figured I would keep tabs on our (hopeful) progress here on her blog. Here is her baseline.
Minimal leg movement
Full sensation in her feet, little to none in her legs
Holds head up for a short period of time, tires quickly
Has sensory issues with loud noises and strange places
Severe reflux
Delayed speech
Hypotonia
Syrinx
So far, she enjoyed the foot massage. I will be working on her feet for a few days until I know how her sweet little ginger skin responds :) If all goes well, I will move on to the raindrop method on her back. Other oil users have testimonials that show this combination of oils and massage has shown improvement in their child. It is going to take some getting used to the smell though. My house smells a little like a tree at this point in time ;)
https://www.youngliving.com/signup/?site=US&sponsorid=1605262&enrollerid=1605262 is my Young Living Essential Oils site where you can sign up as a customer or distributor and explore your own uses of oils <3
Minimal leg movement
Full sensation in her feet, little to none in her legs
Holds head up for a short period of time, tires quickly
Has sensory issues with loud noises and strange places
Severe reflux
Delayed speech
Hypotonia
Syrinx
So far, she enjoyed the foot massage. I will be working on her feet for a few days until I know how her sweet little ginger skin responds :) If all goes well, I will move on to the raindrop method on her back. Other oil users have testimonials that show this combination of oils and massage has shown improvement in their child. It is going to take some getting used to the smell though. My house smells a little like a tree at this point in time ;)
https://www.youngliving.com/signup/?site=US&sponsorid=1605262&enrollerid=1605262 is my Young Living Essential Oils site where you can sign up as a customer or distributor and explore your own uses of oils <3
Sunday, December 22, 2013
Follow Up MRI
It's been almost five months since Callista had her second decompression surgery. Tomorrow is the day we find out if it actually worked. We are scheduled for a full brain and spine MRI bright and early. They will be checking to see if her syrinx has gotten smaller and reviewing her chiari malformation. Please pray that these things look better. If they do not, there are only more serious options for us to consider and I cannot imagine putting my sweet girl through another surgery so soon.
We don't have any reason to believe that this surgery did not work. Callista is doing so much better lately. She is happier, stronger, and more awake than she ever was before. But we've never had an MRI turn out well, so my mommy nerves are a little on edge. Plus, it will be our first experience with a new neurosurgeon, although not our new neurosurgeon. I just want things to go smoothly tomorrow so we can move on to our happy Christmas celebrations. The uncertainty of everything is what bothers me the most. With spina bifida, none of us are ever sure of anything. Another mother put it so beautifully in her blog that there is no black or white for us. We only have gray. No one is able to tell us how life will look like a year or two down the road becuase every single one of our children are different, no matter the lesion level, the surgery options, etc. You have to rely so much on waiting and seeing. Wish us luck!
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In the real world, equipment is slowly accumulating. We were so excited to purchase the chair for Callista that she is sitting in a few months ago. It helps give her just enough support to sit up but be able to relax if she needs a break.
A few weeks ago we also finally got a stander for the little monster. Because Callista cannot bear weight on her legs, she doesn't get the opportunity to strengthen those muscles. By using the stander, we can encourage muscle building, bone growth, and trunk control. It also is helping a lot with her head. She loves being in it, in case you couldn't tell by the huge smile on her face! On the 30th, we take her to get her final fitting for her leg braces. These braces don't mean she can walk, but it will help her hips and her foot stay in proper placement. I look forward to posting a picture of those too :)
To all our followers, I wish you a very Merry Christmas. I hope you all get to spend time with your family and loved ones and have a blessed holiday. <3
We don't have any reason to believe that this surgery did not work. Callista is doing so much better lately. She is happier, stronger, and more awake than she ever was before. But we've never had an MRI turn out well, so my mommy nerves are a little on edge. Plus, it will be our first experience with a new neurosurgeon, although not our new neurosurgeon. I just want things to go smoothly tomorrow so we can move on to our happy Christmas celebrations. The uncertainty of everything is what bothers me the most. With spina bifida, none of us are ever sure of anything. Another mother put it so beautifully in her blog that there is no black or white for us. We only have gray. No one is able to tell us how life will look like a year or two down the road becuase every single one of our children are different, no matter the lesion level, the surgery options, etc. You have to rely so much on waiting and seeing. Wish us luck!
.JPG)
In the real world, equipment is slowly accumulating. We were so excited to purchase the chair for Callista that she is sitting in a few months ago. It helps give her just enough support to sit up but be able to relax if she needs a break.
To all our followers, I wish you a very Merry Christmas. I hope you all get to spend time with your family and loved ones and have a blessed holiday. <3
Friday, November 8, 2013
2nd Butt Day!
The moment where uncertainty meets certainty. You're so unsure but at the same time, you've never been more sure in your life. That's how it feels to make the decision to have fetal surgery. And I am not talking about the day I said yes to the surgery, I am talking about the day the IV is in, the hospital gown is on, and you're on your way down the hall. I had up until the last second to back out. But I didn't.
Two years ago, we went through with the surgery that allowed my daughter to have her back repaired before she was even born. It was the day that the cutest little butt ever entered the world, if only for a short time. We took a chance, and although we will never know what could have been if we hadn't done the surgery, but I am confident we make the right choice in choosing to jump in with both feet and eyes wide open. What I can tell you is that I have a new appreciation for water, showers, and driving. I have an appreciation for ultrasound techs, kind doctors, and NICU nurses who take the time to try to convince you to eat when they know you've had no sleep and haven't left your child's side all day. I have an appreciation for the smallest details, like toe twitches, ticklish feet, and seconds worth of head control. I have an appreciation for myself and a new found will to make things happen if I want them to happen. I also have an appreciation for this little bug we are raising and every little thing she says or does ;)
I cannot believe that our little peanut will be two years old in just a few months. Ever since we found out she had spina bifida, our lives have been moving so fast. All we can do is hold on and try not to miss anything. Happy second butt-day my darling!
Two years ago, we went through with the surgery that allowed my daughter to have her back repaired before she was even born. It was the day that the cutest little butt ever entered the world, if only for a short time. We took a chance, and although we will never know what could have been if we hadn't done the surgery, but I am confident we make the right choice in choosing to jump in with both feet and eyes wide open. What I can tell you is that I have a new appreciation for water, showers, and driving. I have an appreciation for ultrasound techs, kind doctors, and NICU nurses who take the time to try to convince you to eat when they know you've had no sleep and haven't left your child's side all day. I have an appreciation for the smallest details, like toe twitches, ticklish feet, and seconds worth of head control. I have an appreciation for myself and a new found will to make things happen if I want them to happen. I also have an appreciation for this little bug we are raising and every little thing she says or does ;)
I cannot believe that our little peanut will be two years old in just a few months. Ever since we found out she had spina bifida, our lives have been moving so fast. All we can do is hold on and try not to miss anything. Happy second butt-day my darling!
Friday, October 4, 2013
Two Years Ago
Oh October 5th, you are so infamous.
I debated on writing this blog post for a few different reasons. I don't think this day deserves any recognition because in the long run, it is meaningless. Writing about it brings back memories and not any that I particularly care to relive. The day is behind us and life is nothing like I'd imagined it on this day and the days that followed. But, I take ownership of this day because it did play a huge part in my life.
The emotions that course through you as a mother finding out there is something wrong with your unborn child are something that no one besides other parents who have gone through similar situations can even begin to understand. Sure, friends and family members can say "I understand" but it's simply not true. I don't say this to hurt feelings or offend anyone. I say this because it's a truth that doesn't often get said.
As I reread my original post (here), I can't believe how weak I felt. I felt like my life had ended and I didn't know how to go on. My life as I knew it did end, but not life itself. Life is different, but it's good, and in that moment I couldn't even begin to see that. I won't pretend that this will prevent other new moms from feeling this way but it does show that in times where you think you can't possibly survive a situation, there is a future and it's much brighter than you think.
You become a super woman. You will probably be "one of those moms" (you know, the crazy ones) much sooner than you think when dealing with medical professionals. You won't flinch at talking about poop, catheterizing, or posting pictures of "does this look weird to you?!" on your support groups. You'll become an advocate for a cause you probably didn't know existed until now (October is SB Awareness Month!!). And your kid will be AWESOME in more ways than you can count.
I will be spending THIS October 5th cuddling my adorable 20 month old, playing with annoying musical toys she can't get enough of, and catching the game (I swear this child WILL love football, we are starting early!)
I debated on writing this blog post for a few different reasons. I don't think this day deserves any recognition because in the long run, it is meaningless. Writing about it brings back memories and not any that I particularly care to relive. The day is behind us and life is nothing like I'd imagined it on this day and the days that followed. But, I take ownership of this day because it did play a huge part in my life.
The emotions that course through you as a mother finding out there is something wrong with your unborn child are something that no one besides other parents who have gone through similar situations can even begin to understand. Sure, friends and family members can say "I understand" but it's simply not true. I don't say this to hurt feelings or offend anyone. I say this because it's a truth that doesn't often get said.
As I reread my original post (here), I can't believe how weak I felt. I felt like my life had ended and I didn't know how to go on. My life as I knew it did end, but not life itself. Life is different, but it's good, and in that moment I couldn't even begin to see that. I won't pretend that this will prevent other new moms from feeling this way but it does show that in times where you think you can't possibly survive a situation, there is a future and it's much brighter than you think.
You become a super woman. You will probably be "one of those moms" (you know, the crazy ones) much sooner than you think when dealing with medical professionals. You won't flinch at talking about poop, catheterizing, or posting pictures of "does this look weird to you?!" on your support groups. You'll become an advocate for a cause you probably didn't know existed until now (October is SB Awareness Month!!). And your kid will be AWESOME in more ways than you can count.
I will be spending THIS October 5th cuddling my adorable 20 month old, playing with annoying musical toys she can't get enough of, and catching the game (I swear this child WILL love football, we are starting early!)
Friday, September 13, 2013
18 Month Check Up (a little late!)
Callista had her 18 month check up today. She is 29" long now, and weighs almost 22lbs. I am happy to say she has grown! I was a little worried about her weight, since she had such a rough time after her surgery and has been consistently puking for quite awhile. Apparently it isn't having an effect on her gain! She actually talked to our pediatrician today for the first time, even though she's been babbling for months. Annnnnnnnd....we finally got a prescription for HKAFOs (Hip, Knee, Ankle, Foot orthotics). Maybe we can finally get this baby practicing her standing. Our stander is still in process, but we made some progress with billing this week: one step closer!
Standers help our little ones stay upright, encouraging bone growth, better circulation, healthier digestion, and of course, it helps them finally see the world the way everyone else sees it! I am looking froward to her being able to be at a higher eye level and interact more. It will come with a tray so we will be able to sit toys in front of her.
Next Friday, Callista will go to Myelo clinic. This will be the first one I have ever missed. I am sad, but daddy will be able to handle it (with the help of our nurse, everybody needs food and a bathroom break at some point!). I hope they see the massive amount of progress that we see after her decompression surgery. Sure, she is no where near where she would be if she was a typical child, but the girl feels better and that is what matters.
We still have no news from our Homecare Waiver reassessment, so for now we are going with "no news is good news". Our documentation shows her need, now we just need to get the approval. Keep praying!
As for mommy, the new job is going well. I like being able to be home with Callista a lot sooner and the financial aspects have been a blessing for us. A change in insurance *should* make the world of a difference, but we won't see the change for another few weeks. I really had forgotten how awesome it is to work with children directly. It's certainly a lesson to be that all you have to do is trust and ask, and God will give you what you need. Even if it takes his sweet, sweet time doing so. :)
I will update after clinic next week. No MRI (as far as we know!), but she does have a renal ultrasound. They've been stable for a year, we aren't expecting anything new from this. We are getting samples of a blended diet formula though! Plan #987 in Operation: End Vomit!!
Tuesday, August 20, 2013
Move It Move It!
Our little princess is one tough cookie! I cannot imagine how she felt before decompression #2. The progress we have seen has been amazing. There's not really any other word for it. Even though she does not get another MRI until December, I already know what it's going to say in my heart. I know the syrinx is either gone or shrunk significantly. We have a NEW KID. As I write this, she is sitting in her bouncy chair pressing away on her musical flowers. Most parents would be ready to smash the thing by now, but hearing that sound (albeit annoying as it is!) means so much to me. Because a month ago she could have cared less. She didn;t want to play with toys, she didn't move her arms. Yet here she sits, twirling the flowers, making them go, and entertaining herself for the first time in her life. She is trying her hardest to sit up even though she still has another week to go before she's allowed. And best of all, we see leg movement all the time. Coming from little to no movement to frequent kicks and wiggles pretty much makes me cry. No lie there. I had almost resigned myself to the fact that my daughter would never walk, even a little. It doesn't even really matter whether she does or not as long as she's happy and independent. But this gives me so much hope for her mobility. I cannot wait to get her braces so we can really see what she wants to do. The food trials are going so much better than we could ask for. She wants more, more, more! Her five trial bites are never enough for her. And her language is improving too, she is developing new speech sounds that we've never heard her say before and she even throws me a bone now and then by saying mama. Occasionally. Dada is still the word of the day, every day!
Mommy is back to work and while I am sad to leave my baby girl, I am happy for all the blessings my family has received over the last couple of months. So many good changes have happened and we're looking forward to the first day of the rest of our lives as we work to get back on our feet. I don't want to jinx it, but we are starting to see the light at the end of the tunnel.
Mommy is back to work and while I am sad to leave my baby girl, I am happy for all the blessings my family has received over the last couple of months. So many good changes have happened and we're looking forward to the first day of the rest of our lives as we work to get back on our feet. I don't want to jinx it, but we are starting to see the light at the end of the tunnel.
Sunday, August 4, 2013
Nom Nom Nom!
For the first time in a very long time I can say we had a great result from an appointment. Callista is healing up nicely from her decompression but still has to wait until her six week mark before she can start working on building up those neck muscles again. We're going to try to go back to therapy two times per week as long as Callista stays as happy as she has been.
The interdisciplinary feeding clinic was a huge success. We met this team for the first time on Thursday and already they've been more help than anyone else regarding Callie's GI issues. The doctors on the team agree with me that there must be something else besides reflux that is contributing to her excessive vomiting. After over a year of hearing there's nothing else we can do besides surgery they told us there are several medications that could possibly help. We have not just one choice, but many choices if this first med doesn't help. I couldn't believe it! The feeding team evaluated how Callista can eat by mouth and gave us suggestions on starting oral food as well as a referral to speech therapy. Not only can speech therapy help with oral motor skills, but maybe our baby will talk soon! I still have to schedule the speech evaluation. I know it's one more thing to add to our plate but we'll do whatever it takes to make her successful. We will also go back to the feeding team once every 3 months for them to reevaluate and give new suggestions, as well as see their therapist once a month for consultation. At least it's a change in scenery since this one is in Dublin rather than NCH. Miss Callie is also very happy with this visit because she gets to try real food three times a day! She may not be completely sure what to do yet, but she sure enjoys the taste.
We have a GI appointment tomorrow and I'm guessing it will be our last. They've been less than helpful and it will be one thing for us to eliminate trips to Columbus for. The only reason we are going back this time is for follow up from her gastric emptying test. Wish me luck and patience...
The interdisciplinary feeding clinic was a huge success. We met this team for the first time on Thursday and already they've been more help than anyone else regarding Callie's GI issues. The doctors on the team agree with me that there must be something else besides reflux that is contributing to her excessive vomiting. After over a year of hearing there's nothing else we can do besides surgery they told us there are several medications that could possibly help. We have not just one choice, but many choices if this first med doesn't help. I couldn't believe it! The feeding team evaluated how Callista can eat by mouth and gave us suggestions on starting oral food as well as a referral to speech therapy. Not only can speech therapy help with oral motor skills, but maybe our baby will talk soon! I still have to schedule the speech evaluation. I know it's one more thing to add to our plate but we'll do whatever it takes to make her successful. We will also go back to the feeding team once every 3 months for them to reevaluate and give new suggestions, as well as see their therapist once a month for consultation. At least it's a change in scenery since this one is in Dublin rather than NCH. Miss Callie is also very happy with this visit because she gets to try real food three times a day! She may not be completely sure what to do yet, but she sure enjoys the taste.
We have a GI appointment tomorrow and I'm guessing it will be our last. They've been less than helpful and it will be one thing for us to eliminate trips to Columbus for. The only reason we are going back this time is for follow up from her gastric emptying test. Wish me luck and patience...
Tuesday, July 30, 2013
What a GREAT Day!
Callista's Second Annual Benefit was a huge success! We had a great turn out and raised an awesome amount of funds. We've got two walks/runs we will be doing soon so our team is set. Plus, don't forget to check out Socks 4 Surgery, Gracie's Gowns, and Team Iron Aiden on facebook, we will be supporting these organizations by sponsoring child gifts. We also will start the planning stages of home renovations for Callista. Since our home is two story, it's not conducive to her future wheelchair. An additional bathroom with a wheelchair accessible shower and sink as well as remodeling the room attached to the garage are in the works! Our goal is to make our home work for our daughter and to encourage her independence as much as possible. Anything she can do for herself is what we strive for!
I cannot thank our supporters enough for all of the hard work that went into making the benefit a success. Those who donated items, money, time, and prayers were an integral part of why this fundraiser worked out so well! Everyone who came said the food was delicious and they had a lot of fun. There were so many auction items and fantastic prizes to give away. We could not have asked for a better day. I hope to post pictures from our "photo booth" to her facebook group soon.
Thursday is a neurosurgery check up to make sure she is healing properly and to get cleared for therapy. There was a surprise call today from feeding clinic and they had a cancellation so we will be seeing them on Thursday also!
I cannot thank our supporters enough for all of the hard work that went into making the benefit a success. Those who donated items, money, time, and prayers were an integral part of why this fundraiser worked out so well! Everyone who came said the food was delicious and they had a lot of fun. There were so many auction items and fantastic prizes to give away. We could not have asked for a better day. I hope to post pictures from our "photo booth" to her facebook group soon.
Thursday is a neurosurgery check up to make sure she is healing properly and to get cleared for therapy. There was a surprise call today from feeding clinic and they had a cancellation so we will be seeing them on Thursday also!
Tuesday, July 23, 2013
Home Sweet Home
It is truly a compliment to be trusted by your child's doctors. It's nice to hear from professionals that you're doing a great job and they consider you "educated" parents. We finally got to come home today after spending a week in the hospital. Even though Callie was still throwing up, they had such faith in me as a parent and caregiver that they let me take her home anyway. I am so glad we did because she has been doing great. Maybe she just missed her special chair! Me, I just missed my shower, bed, couch, TV, dog, couch, etc. Okay, I think I missed a lot more than her... Mostly I think we are both looking forward to a night of uninterrupted sleep.
We still have to work on getting her feeds back to baseline but otherwise she has made a super recovery. I was worried about her neck strength after such an invasive procedure but she's already moving her head and trying to hold it up. She's not allowed to do anything strenuous until we have our follow up appointment next week, but I'm so proud of her and how resilient she is. These kiddos go through so much and come out smiling, it's just amazing.
Before leaving today, we had "the talk" with her neuro team about transfer of care. We've made a decision and I pray it's the right one. After next week, we will be under a new neurosurgeon and the thought makes me quite nervous. She will have another sedated MRI in 3-6 months to check on the status of her syrinx. Our current doctor thinks this should take care of the issue but if it doesn't, we will come up with the next course of action which could be tethered cord release or shunting her spine (no thanks to either of these, please!)
I know it's not a very interesting blog post, but I wanted to update everyone on how she was doing. There wasn't enough sleep in the world for my brain to work any harder.
We still have to work on getting her feeds back to baseline but otherwise she has made a super recovery. I was worried about her neck strength after such an invasive procedure but she's already moving her head and trying to hold it up. She's not allowed to do anything strenuous until we have our follow up appointment next week, but I'm so proud of her and how resilient she is. These kiddos go through so much and come out smiling, it's just amazing.
Before leaving today, we had "the talk" with her neuro team about transfer of care. We've made a decision and I pray it's the right one. After next week, we will be under a new neurosurgeon and the thought makes me quite nervous. She will have another sedated MRI in 3-6 months to check on the status of her syrinx. Our current doctor thinks this should take care of the issue but if it doesn't, we will come up with the next course of action which could be tethered cord release or shunting her spine (no thanks to either of these, please!)
I know it's not a very interesting blog post, but I wanted to update everyone on how she was doing. There wasn't enough sleep in the world for my brain to work any harder.
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