so, as you may or may not know, we've been doing the feeding therapy for meg in cleveland the past few weeks. and really, it's been going swimmingly.
one of the things that i've been saying the past few months about upping the textures in her mouth (which has really equated into just giving her bigger chunks of things to see if she can swallow them), is that it doesn't really matter how big the chunks that she swallows get... the bigger problem is that she doesn't chew and she doesn't use her tongue to manipulate anything around in her mouth. when i expressed this as a concern at our initial appointment, i wanted them to give me some strategies for getting the girl to chew.
we have been doing some oral exercises and massage, getting her used to the feeling of having something in places she's not accustomed to. she struggled with it at first... and not that she's not struggling with it now... but she's starting to "get it". i think that things are slowly starting to come together.
friday, we were about to leave for our appointment, and since it takes us a little over an hour to get there, i wanted her fussiness in the car to not be related to hunger, so i gave her a few containers of food to tide her over till our arrival. lo and behold, she gets fussy about 45 minutes into the ride, and my usual arsenol of toys and fun kid cd's wasn't doing the trick, so i gave her some milk. she went into our appt burping! i thought for sure it would be disaster, with her refusing to eat from being full.
we got right in, and immediately started with oral exercises, then chunks of strawberries. the therapist was squishing them onto her side teeth to make her have to manipulate them to swallow. she did great!! then came the true test: one inch pieces of spaghetti with minimal sauce. please understand that this girl will not eat unless puree accompanies almost every bite. i thought for sure that she'd have a major bout with throwing up when the spaghetti went in. i was doing my usual... entertaining her to take her mind off of eating... making her favorite stuffed animal dance to music and play peekaboo. she ate a whole ounce of spaghetti pieces! chewed them, even! and laughing in between while watcing her octopus dance!! it was a modern-day miracle, really. and truly a vision that i had to witness to believe.
----
so i was recounting the story of the spaghetti to a friend, and telling her how all i do lately is seek this level of "fine-ness". what is that, exactly? you know, maybe not where i truly believe that everything is fantastic and great and dreamy, but where things are just fine. and lately, with such slow meg-progress, it's been harder to pick myself back up to fine-ness when the lows are so low. but i truly believe that God gives me these small little indicators that, indeed, everything is fine. will be fine. has been fine. and never necessarily on my timeline, but definitely on the one that works... which would be meg's.
so needless to say, i feel like i've been coming up out of the doom and gloom that was april and may, and it's getting good. things are never exactly the way that i picture they will be (are things ever really that way? not too often, for sure), but somehow, they are good and they are working and they are just the way they are supposed to be.
things are fine! the girl can eat spaghetti!!
Saturday, June 4, 2011
Thursday, May 26, 2011
tragic and breathtaking.
where've you been, girl??
good question. i've been participating in the circle of life. in the past few months, we've been touched by a few tragedies... and celebrated the greatest of joys in between. it's been exhausting and exhuberant, all wrapped in the tiny, fragile present that we call life.
a few months ago, i got an email from a friend. she and i don't speak that often... last time i think was about two years ago, and before that, it was when she made the trek to myrtle beach to spend a day with us when i was pregnant with meg. she is not only one of my oldest friends... our days began a long time ago, when we held hands outside her front porch and got our picture taken together before we stepped on the school bus for the first time, kindergarten-bound... but one of my dearest, as well. and i have always been a little jealous of her beautiful name, so i can safely say that she is part of the inspiration behind my daughter's name. that's right, miss meg was getting married. she tracked me down through email and invited us to share in her special day. to say that i was flattered would be an understatement. we drove down to south carolina this weekend to wish her a lifetime of happiness with the love of her life.
sitting in the church while listening to the ceremony, i was struck at how beautiful life is. she was the most gorgeous bride, an electric smile that lit up the sanctuary as she made her way to her betrothed. it was just breath-taking, and i was so happy to be there at that moment.
toward the end of the ceremony, after they said their "i do's", the pastor prayed that all married couples in attendance would also be recommited in their loyalty to one another, and i glanced over at miguel. i was all at once thankful for the man and father that he is, thankful for the family and life that we have, and thankful to be sharing a lifetime of moments with someone who loves me. we had spent ten hours in the car getting to south carolina, and we were sharing laughs and memories of road trips past. just 9 years ago, we traveled that same road all the way to miami to get on a plane and go to the bahamas. days later, looking out at the moonlit and sparkling ocean that surrounded us on a pier, he asked me to marry him. and in that church, surrounded by meg's family and friends, i was glad that i said yes.
coming home, we got word that a friend of ours was tragically killed over the weekend. and then once home, we found out that another friend's baby had passed away. and then came the cancer diagnoses... the destruction caused by tornadoes... the awful, awful news doesn't quite seem to end. it leaves us reeling, wondering what it all means.
i don't pretend to have any answers to our eternal questions, but i do know this. we're supposed to be celebrating. even in death, the funeral is not supposed to be anything but a celebration of the life that the person has lived. the accomplishments that they have made. the beautiful children that they have brought into this world. we're supposed to be celebrating the tiny moments... giving our love to people freely and deeply. the bad news lately has reminded me that life is indeed short... whether you live mere months, 34 years, or almost 90.
i aspire to be a person who is more of a giver than a taker. more laughter than tears. more effort put toward the positive instead of dwelling in all the negative.
there's a lot of life to be lived. it's all at once tragic and breathtaking. but also so, so worth the celebration.
good question. i've been participating in the circle of life. in the past few months, we've been touched by a few tragedies... and celebrated the greatest of joys in between. it's been exhausting and exhuberant, all wrapped in the tiny, fragile present that we call life.
a few months ago, i got an email from a friend. she and i don't speak that often... last time i think was about two years ago, and before that, it was when she made the trek to myrtle beach to spend a day with us when i was pregnant with meg. she is not only one of my oldest friends... our days began a long time ago, when we held hands outside her front porch and got our picture taken together before we stepped on the school bus for the first time, kindergarten-bound... but one of my dearest, as well. and i have always been a little jealous of her beautiful name, so i can safely say that she is part of the inspiration behind my daughter's name. that's right, miss meg was getting married. she tracked me down through email and invited us to share in her special day. to say that i was flattered would be an understatement. we drove down to south carolina this weekend to wish her a lifetime of happiness with the love of her life.
sitting in the church while listening to the ceremony, i was struck at how beautiful life is. she was the most gorgeous bride, an electric smile that lit up the sanctuary as she made her way to her betrothed. it was just breath-taking, and i was so happy to be there at that moment.
toward the end of the ceremony, after they said their "i do's", the pastor prayed that all married couples in attendance would also be recommited in their loyalty to one another, and i glanced over at miguel. i was all at once thankful for the man and father that he is, thankful for the family and life that we have, and thankful to be sharing a lifetime of moments with someone who loves me. we had spent ten hours in the car getting to south carolina, and we were sharing laughs and memories of road trips past. just 9 years ago, we traveled that same road all the way to miami to get on a plane and go to the bahamas. days later, looking out at the moonlit and sparkling ocean that surrounded us on a pier, he asked me to marry him. and in that church, surrounded by meg's family and friends, i was glad that i said yes.
coming home, we got word that a friend of ours was tragically killed over the weekend. and then once home, we found out that another friend's baby had passed away. and then came the cancer diagnoses... the destruction caused by tornadoes... the awful, awful news doesn't quite seem to end. it leaves us reeling, wondering what it all means.
i don't pretend to have any answers to our eternal questions, but i do know this. we're supposed to be celebrating. even in death, the funeral is not supposed to be anything but a celebration of the life that the person has lived. the accomplishments that they have made. the beautiful children that they have brought into this world. we're supposed to be celebrating the tiny moments... giving our love to people freely and deeply. the bad news lately has reminded me that life is indeed short... whether you live mere months, 34 years, or almost 90.
i aspire to be a person who is more of a giver than a taker. more laughter than tears. more effort put toward the positive instead of dwelling in all the negative.
there's a lot of life to be lived. it's all at once tragic and breathtaking. but also so, so worth the celebration.
Monday, May 16, 2011
bitter/sweet.
perhaps it's the yin/yang of life... the inevitable ups and downs that happen... it's the "rollercoaster" that some describe... whatever it is, i'm not really a fan.
maybe it's spring, and the awful birthday day that it brought with it, or all the more-awful rain that has been on repeat for the last month or so.
or maybe, it's the ebb and flow of special needs that i have described before. i feel like sometimes dealing with our special needs gets to be overwhelming. and... with me being the mom... the worrying that goes along with my job gets to be overwhelming, as well. not to say that we haven't had some ups with our downs, but it just seems lately to be a little harder to bounce right back to happy.
for instance, i felt the other day like quitting everything. so i did... and am in the process. there are times when i feel like i hit a wall, and these past weeks have been no exception. we've done some more medical appointments for meg... the developmental peditrician, the nutritionist, feeding therapy, and some blood drawn for genetics testing. if ever there is a rollercoaster to life, those appointment days are definitely it. i've been jetting meg to-and-fro for all these appointments, and am exhausted by them.
hmmm. maybe i should discuss progress, since that is a bright and cheery subject. although it's been s.l.o.w., it's been there. and for that, i am grateful. we've been seeing the feeding team at ccf, and have been seeing some good results. this past appointment, she tolerated some oral exercises and she ate an ounce of mac and cheese that was cut up into small bites. whenever we're there, i soak up all their information like i'm a sponge. i have been doing some of the oral exercises here with her at home, in the hopes of decreasing the sensitivities in her mouth. she has become a real fan of gum massage in the past few days. i also wanted to shout "HALLELUJAH!!" after she ate the ounce of macaroni. it felt like victory!
let's see... we've been tweaking her diet a little, moving her towards the same foods that we eat, and not so much baby food. she's been eating some great textures from gerber graduates. we've also been upgrading some of the flavors that she's been so used to, and she is becoming quite the pasta fan. yesterday, she ate a graduates container of pasta stars, carrots, peas and corn. just a few weeks ago, we got about three bites into that same container and had to quit, so that is progress. see? it's there. it just bothers me that sometimes i have to dig back in my brain to find it.
---
the school year is coming to a close, and quickly. danny is almost done with his second year of preschool, and i can hardly believe it. in four months, i will have a full-fledged kindergartener. homework and writing assignments and beginning reading. i am so excited to see who he becomes each day, and am so excited to see what adventures lay ahead for him in his first year of school. i've already been looking for uniform items... navy pants and white polos. he is going to be so handsome!
---
i can't remember if i said it on here or not, but we struggled getting danny to go to indoor soccer in january. he hated going, and we hated dragging him there. we even had to bribe him to go... panera's pumpkin muffies were required after each soccer lesson.
we were hoping that with the weather getting nicer (that was supposed to happen, right?), and being able to have the wooster-renowned coach teaching him, that he'd like it better. a few months ago, i signed him up for two weeks of soccer and two weeks of t-ball. as if wanting to realize my worst fears, he immediately started pitching a fit when we told him that soccer was coming up. and t-ball. "i only want to take one lesson, and it will be soccer!" or "i only want to play soccer with daddy in the backyard!"
lo and behold, soccer time rolls around and he loves it. actually requests it! it helps that his best friend from school is in the same class, and that we are out there playing with him, and that he scored two goals each time they played as teams... but even just to hear him ask when the lesson is, and that he can't wait to go... well, it just warms my heart. hallelujah to the wooster-renowned coach. and thanks for bringing back the love for the sport that he was lacking a few weeks ago!
---
end of school = teacher gifts. and i am stumped. meg's last day is thursday, and danny's last day is next friday. what are you getting your kid's teachers? what says "thank you" for all the great things that teachers do, without being something that they immediately want to throw in the trash or add to the already too-big heap of teacher-gift crap? maybe a gift card is the way to go. if it was me, all the kids could pitch in for a starbucks card. hmm... i might have to do a little digging this week...
---
operation playroom is in full swing. two weekends ago, miguel and my dad took down a wall in our basement to join a bedroom to our existing play area in the basement. so far, i love the change and everything is still covered in drywall dust! i gathered a bunch of ideas for playrooms online, and decided that my two new must-haves for the room are a stage and a ballet bar with a mirror. i have visions in my head about how great it will look when it's completed. we'll have an art area with a drying line on the wall for painted pictures, and more space for the kitchen and train table. the easel will be on the wooded portion of the floor and we'll have some cozy carpet areas to play games and solve puzzles and snuggle up on. i also have a vision of an anywhere couch from pottery barn kids down there, as well, but haven't spilled the beans on that portion yet. the couch or some bean bags... either way.
and i put together a bunch of frames this weekend of the kids pictures... all the milestone ones that we've had done over the years. i want to spray paint some the frames to add some color to the space. right now, everything is white and while that's a great canvas for dreaming, it also needs to be a little more lively. i'm thinking either a primary palette or maybe an aqua/pink/green palette. we'll see. whatever route we take, it has to be done in baby steps. with an anywhere couch to match.
---
so there you have it. some of the things that i've been working on. i have a summer-celebratory brunch coming up, which i am hoping comes with good weather. it's planned for june, so i'm hoping that the rain will clear up here in the next week so that we can get some good outside days in after school lets out. i want to host more playdates and meals this summer. the ones that i hosted last summer were really fun, and thinking about them right now makes me pine for them. one upgrade i'm working on for this summer is a double or triple slip and slide. last year's single slide was broken, which created the perfect opportunity for a new slide. i loved the ones with pools of water at the end, and now they have some great slides that are wide. if i can't have a pool, then surely i can have a tricked-out slip and slide. right? that's a good compromise, right?
in my head, i'm all snow cones and water tables and sandboxes and slip and slides and lazy hazy days in the backyard. even some great evenings taking pictures of the kids playing. thus far, none of it. come on, sun. we NEED you.
---
one last idea. i've been wanting to get better at taking pictures, and have been trying to think of a way to do it. i don't feel bad about asking friends to volunteer their kids as models, i just can't take money from them, in case my photo shooting skills suck. so i thought that it might be fun to try a little venture called "friendly expressions", where i take pictures of people (and/or their kids) for free in order to get experience. i love toting the camera around with me and getting great and unexpected shots of kids. letting them be who they are while they are playing or doing something that they enjoy. i'd love to get experience, and be able to share something great in return. it's just an idea i had... in the beginning stages of forming, but i thought that it was a fun one. and who doesn't love pictures of their kids?
---
my one last idea is more of a crazy one. i hosted a 31 party a few weeks ago, and then attended another one last week. and haven't been able to put a lid on how excited i am about the bags. i'd love to sell 31. i know, crazy, right? but honestly, i haven't been able to stop thinking about the picnic thermal tote. and if i can't stop thinking about it, then other people must feel this way about it, too, right? plus, it's just an awesome product. i want someone i know and love to sell it, and i will help support them! :)
---
okay. i think that's it. no more crazy ideas. i have a playroom to finish and plenty of therapy appointments to be going to. but a gal needs something fun in her life, right? maybe that's what the playroom is for... :) wouldn't it be totally cute decked out as a photography studio with a bunch of momogrammed bags? maybe i'm on to something here....
maybe it's spring, and the awful birthday day that it brought with it, or all the more-awful rain that has been on repeat for the last month or so.
or maybe, it's the ebb and flow of special needs that i have described before. i feel like sometimes dealing with our special needs gets to be overwhelming. and... with me being the mom... the worrying that goes along with my job gets to be overwhelming, as well. not to say that we haven't had some ups with our downs, but it just seems lately to be a little harder to bounce right back to happy.
for instance, i felt the other day like quitting everything. so i did... and am in the process. there are times when i feel like i hit a wall, and these past weeks have been no exception. we've done some more medical appointments for meg... the developmental peditrician, the nutritionist, feeding therapy, and some blood drawn for genetics testing. if ever there is a rollercoaster to life, those appointment days are definitely it. i've been jetting meg to-and-fro for all these appointments, and am exhausted by them.
hmmm. maybe i should discuss progress, since that is a bright and cheery subject. although it's been s.l.o.w., it's been there. and for that, i am grateful. we've been seeing the feeding team at ccf, and have been seeing some good results. this past appointment, she tolerated some oral exercises and she ate an ounce of mac and cheese that was cut up into small bites. whenever we're there, i soak up all their information like i'm a sponge. i have been doing some of the oral exercises here with her at home, in the hopes of decreasing the sensitivities in her mouth. she has become a real fan of gum massage in the past few days. i also wanted to shout "HALLELUJAH!!" after she ate the ounce of macaroni. it felt like victory!
let's see... we've been tweaking her diet a little, moving her towards the same foods that we eat, and not so much baby food. she's been eating some great textures from gerber graduates. we've also been upgrading some of the flavors that she's been so used to, and she is becoming quite the pasta fan. yesterday, she ate a graduates container of pasta stars, carrots, peas and corn. just a few weeks ago, we got about three bites into that same container and had to quit, so that is progress. see? it's there. it just bothers me that sometimes i have to dig back in my brain to find it.
---
the school year is coming to a close, and quickly. danny is almost done with his second year of preschool, and i can hardly believe it. in four months, i will have a full-fledged kindergartener. homework and writing assignments and beginning reading. i am so excited to see who he becomes each day, and am so excited to see what adventures lay ahead for him in his first year of school. i've already been looking for uniform items... navy pants and white polos. he is going to be so handsome!
---
i can't remember if i said it on here or not, but we struggled getting danny to go to indoor soccer in january. he hated going, and we hated dragging him there. we even had to bribe him to go... panera's pumpkin muffies were required after each soccer lesson.
we were hoping that with the weather getting nicer (that was supposed to happen, right?), and being able to have the wooster-renowned coach teaching him, that he'd like it better. a few months ago, i signed him up for two weeks of soccer and two weeks of t-ball. as if wanting to realize my worst fears, he immediately started pitching a fit when we told him that soccer was coming up. and t-ball. "i only want to take one lesson, and it will be soccer!" or "i only want to play soccer with daddy in the backyard!"
lo and behold, soccer time rolls around and he loves it. actually requests it! it helps that his best friend from school is in the same class, and that we are out there playing with him, and that he scored two goals each time they played as teams... but even just to hear him ask when the lesson is, and that he can't wait to go... well, it just warms my heart. hallelujah to the wooster-renowned coach. and thanks for bringing back the love for the sport that he was lacking a few weeks ago!
---
end of school = teacher gifts. and i am stumped. meg's last day is thursday, and danny's last day is next friday. what are you getting your kid's teachers? what says "thank you" for all the great things that teachers do, without being something that they immediately want to throw in the trash or add to the already too-big heap of teacher-gift crap? maybe a gift card is the way to go. if it was me, all the kids could pitch in for a starbucks card. hmm... i might have to do a little digging this week...
---
operation playroom is in full swing. two weekends ago, miguel and my dad took down a wall in our basement to join a bedroom to our existing play area in the basement. so far, i love the change and everything is still covered in drywall dust! i gathered a bunch of ideas for playrooms online, and decided that my two new must-haves for the room are a stage and a ballet bar with a mirror. i have visions in my head about how great it will look when it's completed. we'll have an art area with a drying line on the wall for painted pictures, and more space for the kitchen and train table. the easel will be on the wooded portion of the floor and we'll have some cozy carpet areas to play games and solve puzzles and snuggle up on. i also have a vision of an anywhere couch from pottery barn kids down there, as well, but haven't spilled the beans on that portion yet. the couch or some bean bags... either way.
and i put together a bunch of frames this weekend of the kids pictures... all the milestone ones that we've had done over the years. i want to spray paint some the frames to add some color to the space. right now, everything is white and while that's a great canvas for dreaming, it also needs to be a little more lively. i'm thinking either a primary palette or maybe an aqua/pink/green palette. we'll see. whatever route we take, it has to be done in baby steps. with an anywhere couch to match.
---
so there you have it. some of the things that i've been working on. i have a summer-celebratory brunch coming up, which i am hoping comes with good weather. it's planned for june, so i'm hoping that the rain will clear up here in the next week so that we can get some good outside days in after school lets out. i want to host more playdates and meals this summer. the ones that i hosted last summer were really fun, and thinking about them right now makes me pine for them. one upgrade i'm working on for this summer is a double or triple slip and slide. last year's single slide was broken, which created the perfect opportunity for a new slide. i loved the ones with pools of water at the end, and now they have some great slides that are wide. if i can't have a pool, then surely i can have a tricked-out slip and slide. right? that's a good compromise, right?
in my head, i'm all snow cones and water tables and sandboxes and slip and slides and lazy hazy days in the backyard. even some great evenings taking pictures of the kids playing. thus far, none of it. come on, sun. we NEED you.
---
one last idea. i've been wanting to get better at taking pictures, and have been trying to think of a way to do it. i don't feel bad about asking friends to volunteer their kids as models, i just can't take money from them, in case my photo shooting skills suck. so i thought that it might be fun to try a little venture called "friendly expressions", where i take pictures of people (and/or their kids) for free in order to get experience. i love toting the camera around with me and getting great and unexpected shots of kids. letting them be who they are while they are playing or doing something that they enjoy. i'd love to get experience, and be able to share something great in return. it's just an idea i had... in the beginning stages of forming, but i thought that it was a fun one. and who doesn't love pictures of their kids?
---
my one last idea is more of a crazy one. i hosted a 31 party a few weeks ago, and then attended another one last week. and haven't been able to put a lid on how excited i am about the bags. i'd love to sell 31. i know, crazy, right? but honestly, i haven't been able to stop thinking about the picnic thermal tote. and if i can't stop thinking about it, then other people must feel this way about it, too, right? plus, it's just an awesome product. i want someone i know and love to sell it, and i will help support them! :)
---
okay. i think that's it. no more crazy ideas. i have a playroom to finish and plenty of therapy appointments to be going to. but a gal needs something fun in her life, right? maybe that's what the playroom is for... :) wouldn't it be totally cute decked out as a photography studio with a bunch of momogrammed bags? maybe i'm on to something here....
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