Feb. 6-12 is Feeding Tube Awareness Week. I plan to post as often as possible this week on different aspects of the subject. Won't you come along with me?
Feeding tubes... ...I remeber the first time I ever saw a feeding tube. I was working in a special needs preschool. A trailer module held two classrooms side by side and the neighboring teacher recieved a new student. A precious little girl, very involved, with a tubie. Poor teacher was having a hairy day anyhow, AND was new to the tubie...lunch time did not go well for her at all. As I recal there was milk about everywhere except in the childs tummy. I was impacted. I simply didn't know such a thing existed. It was hard to understand.
All those years later when I sat in a conference room across the hall from the NICU at the hospital and heard the doctor pronounce the word "gastrostomy tube...which is a feeding tube in her stomach", that memory came flooding back in vivid color. At least I knew how to picture what she was talking about because I had seen one once. Crazy the things that come to mind when one has really no idea what to think. No real experience to draw on that would give a clue as to what should be done, said or thought next in this given context.
I also remember bathing my precious baby for the very first time ever. I had missed out on the other baths. She was post-op and still very tender in the tubie area. Bathing a tiny newborn is enough of an "experience" when your not used to doing it. I felt like I was all thumbs. She screamed the entire time. I was relieved, exhausted and secretly sad when it was over. I'd fantisized before she was ever born about the romantic special time we could share at baths, with relaxing warm water and her happy little coos. I hadn't imagined side-stepping an akward "thing" sticking out of my daughters still swollen belly that shouldn't get wet, and the tube hanging from it that shouldn't get pulled while balancing a writhing, shreiking, slipery half-pint. At that time she was still "venting" from surgery, so it had to be up and open. I hadn't yet really wraped my head around the fact that we had this thing to deal with, let alone the mechanics of it.
When we were in the discharge process from the hospital, my utter ignorance hit me full force. I was on information overload and emotional overload. Suddenly I was painfully aware that my husband and I were on our own with this thing and surly there were many things we needed to know that we didn't about this tubie business. I remember through my haze asking the nurse to show me how to disconnect the extension tube from the g-tube. They had always left it in, but I was certain that I would eventually have to take it off. It was a new tube, and tight since it had never been disconnected. What would eventually become so second nature to me that I can literally do with my eyes closed (or in the dark), easily, simply and quickly, took consultation with three different people (I discovered that not just anybody knows how, even among the nursing staff), almost a half hour of frusteration and agony, and screams, screams and more screams from my daughter. By the time we finally got out of there I was simultaniously more relieved and rattled than I'd ever been in my life.
I was utterly unprepared for the questions and comments to come from the general public once we got home and on our own. But that just might be another post for another day. Please, come along with me on Feeding Tube Awareness Week. Take five minutes to google the subject or to read a little information at a link from my blog in the name of furthering your education. Knowledge is power and you just never know when it may help you, someone you love, or simply make you better equiped for next time you bump into me at the park giving my daughter her tube feeding.
Link of the day: The Oley Foundation
Monday, February 7, 2011
Thursday, February 3, 2011
Saturday, January 29, 2011
Q.O.T.D.
DS (on his truck): "me lightning McQueen!"
DD (on trike and without missing a beat): "and me Sally with a bike!"
DD (on trike and without missing a beat): "and me Sally with a bike!"
Sunday, January 23, 2011
Time to Talk about Eating
So...how is Mic doing with oral feeding these days??? Its been so long since I've tried to really write about it that it feels like theres LOTS to say and NOTHING to say. Weird contradiction, none-the-less, how I feel.
I had been planning to do another wean therapy here at home last summer. And just then she hit a weight gain crisis. All my effort was forced from oral intake to blenderized diet recipe analysis, and just trying to stop the weight loss. Well, now that that is finally more under control, my mind is turning oral-ward again.
I have known all along that before I "DO" anything drastic, I need to collect some data again. Going back to the whole, weigh-each-gram-before-and-after-each meal-and-count-each-calorie-down-to-the-half, routine feels so cumbersome and overwhelming. It is, however, a very necessary evil. Last week I managed to log one day. ...and is was cumbersome...but also, surprisingly, a bit exhilerating. Its premature to take anything off of one day only, but I did have some immediate observations. 1)a half a sandwich has way more calories in it than I remembered! 2)her oral cal's for the day didn't show much progress, but the amount of effort it took to get those calories into her, ...there's no comparision! Breakfast was work...it always is. I did dedicate a lot of one-to-one time to her at lunch too... but supper was basically effortless. She sat. I placed the plate in front of her. She ate. ...every last bite of the small portion. And asked to be excused to go play. That is so profoundly "normal" I could work myself up to tears over it. The good kind of tears.
Some other "progressy" events recently include an evening when she asked for refried beans with her chips. And a different day when she asked for chocolate milk and actually drank the very small amount that we gave her--all of it! These are both textures that if one is the easiest for her and 10 they hardest they were 11's. She has not repeated either of those events, but she has done it once, is processing it, and in time I know she will go there again and it will be easier each time.
We are not on a time table. I cannot, will not, do that to us. But soon, sometime very soon, we will do another calorie-cut, and feeding therapy, mimicking the technics we learned in her feeding therapy at the Toft House, and the possabilities excite me. Maybe, just maybe we are finally near a significant jump in numbers. We covet your prayers and encouragement as we continue along this way.
I had been planning to do another wean therapy here at home last summer. And just then she hit a weight gain crisis. All my effort was forced from oral intake to blenderized diet recipe analysis, and just trying to stop the weight loss. Well, now that that is finally more under control, my mind is turning oral-ward again.
I have known all along that before I "DO" anything drastic, I need to collect some data again. Going back to the whole, weigh-each-gram-before-and-after-each meal-and-count-each-calorie-down-to-the-half, routine feels so cumbersome and overwhelming. It is, however, a very necessary evil. Last week I managed to log one day. ...and is was cumbersome...but also, surprisingly, a bit exhilerating. Its premature to take anything off of one day only, but I did have some immediate observations. 1)a half a sandwich has way more calories in it than I remembered! 2)her oral cal's for the day didn't show much progress, but the amount of effort it took to get those calories into her, ...there's no comparision! Breakfast was work...it always is. I did dedicate a lot of one-to-one time to her at lunch too... but supper was basically effortless. She sat. I placed the plate in front of her. She ate. ...every last bite of the small portion. And asked to be excused to go play. That is so profoundly "normal" I could work myself up to tears over it. The good kind of tears.
Some other "progressy" events recently include an evening when she asked for refried beans with her chips. And a different day when she asked for chocolate milk and actually drank the very small amount that we gave her--all of it! These are both textures that if one is the easiest for her and 10 they hardest they were 11's. She has not repeated either of those events, but she has done it once, is processing it, and in time I know she will go there again and it will be easier each time.
We are not on a time table. I cannot, will not, do that to us. But soon, sometime very soon, we will do another calorie-cut, and feeding therapy, mimicking the technics we learned in her feeding therapy at the Toft House, and the possabilities excite me. Maybe, just maybe we are finally near a significant jump in numbers. We covet your prayers and encouragement as we continue along this way.
Friday, January 7, 2011
Black
When I was a young girl, never being one to easily make up my mind, I had a range of favorite colors. Mint green, baby blue, turquiose blue, brick red...and others depending on the day, the purpose and my mood. I have always liked color. (except when I was depressed but thats another story for another time...) I remember vividly the day in school in about the second or third grade when it dawned on me that the "cool" little girls all liked pink and purple. Pink and purple EVERYTHING. Even sweet tarts, even though the yellow ones tasted better. Maybe I didn't externalize it as much, wanting to fit in and all, but deep down I still thought back then that mint green looked better with pink than purple did! Oh, these grade school dilemas, so deep and important. ;o)
Now I have a little school girl of my own. She keeps life interesting, challenges me to no end, and makes me chuckle often. ...and apparently no one has yet told her that she ought to just like pink and purple! And maybe they never will, which would be fine with me. Her favorite color when painting or coloring is black. ...sometimes dark blue, purple or brown, perhaps a little bit of pink, but especially and above all...black. Sometimes respecting her choice is a bit of a stretch for me...can't we add some COLOR to that!? However, I try not to interfere in her art.
She has been begging me for three days to paint eggs, so this morning I blew the breakfast eggs and saved the shells for painting. Ever looking for a way to combine school and play I announced that we were going to paint winter eggs. We talked a lot about the kinds of things and colors that remind us of winter. I told them to paint their eggs with colors that reminded them of winter and then I let them have at it. I knew better than to interfer any further with their color choices.
And here's what we got!
...and two of her three eggs were black : )
...oh, she does make me chuckle so!
Her brother proudly pointing at his creations.
Now I have a little school girl of my own. She keeps life interesting, challenges me to no end, and makes me chuckle often. ...and apparently no one has yet told her that she ought to just like pink and purple! And maybe they never will, which would be fine with me. Her favorite color when painting or coloring is black. ...sometimes dark blue, purple or brown, perhaps a little bit of pink, but especially and above all...black. Sometimes respecting her choice is a bit of a stretch for me...can't we add some COLOR to that!? However, I try not to interfere in her art.
She has been begging me for three days to paint eggs, so this morning I blew the breakfast eggs and saved the shells for painting. Ever looking for a way to combine school and play I announced that we were going to paint winter eggs. We talked a lot about the kinds of things and colors that remind us of winter. I told them to paint their eggs with colors that reminded them of winter and then I let them have at it. I knew better than to interfer any further with their color choices.
And here's what we got!
A paper full of black splotches...
...and two of her three eggs were black : )
...oh, she does make me chuckle so!Her brother proudly pointing at his creations.
Sunday, January 2, 2011
2010 Birthday Reviews
I am quite aware that I didn't get around to blogging after any of my kid's birthdays last year. Busy, busy, busy! So as we usher in 2011 and I also just happen to have a free evening for resizing and uploading pictures, I thought it would be fun to do one mega birthday upload. (P.S. If you don't like pictures, maybe you should just skip this post...there's lots!) ;o)
"Friends!"
The black nose and freckles were optional, but the dog ears were not!
A special gift from Grandma and Grandpa Westover
Toy Story 3 was well represented in the gifts, to my son's great delight!
...Thank you, dear Lord, for allowing my children another year of life. I am aware that every day with them is a gift from You and I try not to take that for granted. May they have many more years to come, full of life, love and growth in You. Amen.
We all have our birthdays in the second half of the year, and of the children, my little man is first. We threw him a "real" party for the first time and I did a doggie theme.
"Friends!"
The black nose and freckles were optional, but the dog ears were not!
A special gift from Grandma and Grandpa Westover
Toy Story 3 was well represented in the gifts, to my son's great delight!He refused to take that t-shirt off for the next three days and nights.
The cake. 
More Woody!!! Hooray!
My little joy turned one!
I see no sense in a big party for "1", but of course, had to at least make a cake.
The cake. 
LLLLLLLove the look on his face!
More Woody!!! Hooray!
My little joy turned one!
I see no sense in a big party for "1", but of course, had to at least make a cake....She liked it!
I found this big ball and couldn't resist getting it for her,...
... its about as big as she is.
She liked it, but wasn't quite sure what to do with it!
Mic had three medical appiontments at the hospital on the day of her birthday. Its just how things happened to land this year. Despite how unbirthday-like that sounds, there were a couple very special things about that day. One was the fact that she ate five and a half chicken nuggets doused in kethcup after her appiontments were over!!! ...I have this vivid memory of us in a fast food restaurant shortly after her feeding therapy and confidently buying a small order of nuggets for her. It was a particualarly bad day for several reasons and in the end I ate every last nugget myself and felt like crying a bucket of tears over it. This contrasting memory made every single effortless bite of those 5 and a half nugguts full of meaning, joy and hope.
A few more special things about the day: 1) Time on the hospital playground structure, without a doubt, one of my daughter's favorite places on earth.
Some days later we did have a little get-to-gether at the park for Mic with some of her friends,
It was my first attempt at a decorative Jello. I was traumatized because it didn't look nearly as nice as the example picture online. But without that point of comparison, it really wasn't so bad. And Mic loved her stars, which is really the part that matters anyhow.
The whole group
and one happy little girl!
I found this big ball and couldn't resist getting it for her,...
... its about as big as she is.
She liked it, but wasn't quite sure what to do with it!
Mic had three medical appiontments at the hospital on the day of her birthday. Its just how things happened to land this year. Despite how unbirthday-like that sounds, there were a couple very special things about that day. One was the fact that she ate five and a half chicken nuggets doused in kethcup after her appiontments were over!!! ...I have this vivid memory of us in a fast food restaurant shortly after her feeding therapy and confidently buying a small order of nuggets for her. It was a particualarly bad day for several reasons and in the end I ate every last nugget myself and felt like crying a bucket of tears over it. This contrasting memory made every single effortless bite of those 5 and a half nugguts full of meaning, joy and hope.
A few more special things about the day: 1) Time on the hospital playground structure, without a doubt, one of my daughter's favorite places on earth.2) A new DVD she was particularly keen on having for her birthday.
and 3) The best for last. A MIRACLE! A hole in her ear left by her ear tube was declared completly closed! About a year ago the doctor told us that if it hadn't closed by then it wouldn't close on its own and would require surgery down the road. All glory to God our healer!
Some days later we did have a little get-to-gether at the park for Mic with some of her friends,
It was my first attempt at a decorative Jello. I was traumatized because it didn't look nearly as nice as the example picture online. But without that point of comparison, it really wasn't so bad. And Mic loved her stars, which is really the part that matters anyhow.
The whole group
and one happy little girl!
Sunday, December 12, 2010
Sweet Memories
Some time back I mentioned more pictures from my mom and sister´s visit here this last summer. Time has FLOWN! Its hard to believe that our time together is already about 5 1/2 months behind us. A lot has happened since then, making those memories all the more precious, more about that later. But in the mean time would you like to come down memory lane with me?
Of course it wouldn't be family time without table games!
Concentration
Multitasking
We took a road trip to Hidalgo. 
We stoped in a little village to eat our tortas for lunch. 
There were lots of little private pools and creative nooks up in the hill.
Grilling mexican style. It was all delicious.
The crowning treat, zuccini blossom quesadillas with jalapeño spiked cheese. um, um, ummm!!!
Of course it wouldn't be family time without table games!
Concentration
Multitasking
We took a road trip to Hidalgo. It was a bit longer than we expected, but very picturesque.
Field boundries were marked with piled rock walls,
the picture really can't do justice, it was amazing.
We stoped in a little village to eat our tortas for lunch. Turns out they were having a festival, the whole town and especially the cathedral was decorated and there was live music in the town square while we ate.
And this was the destination of our road trip.
Natural mineral hot springs.
In a beautiful setting, way out in the middle of nowhere.
In a beautiful setting, way out in the middle of nowhere.A hidden paradise. ...with the exception of the high population of bees,
and very warm stuffy night, it was nearly perfect.
There were lots of little private pools and creative nooks up in the hill. We purposly went during the week and really hardly even had to share the pools.
And of course what is time with Auntie and Grandma,
And of course what is time with Auntie and Grandma, without a visit to the park before they leave!?
We took a picnic lunch, but were to busy eating and
We took a picnic lunch, but were to busy eating andattending to kiddos to get any pictures of that : )
The youngest...
...and eldest needed a little cat nap.
The youngest...
...and eldest needed a little cat nap.
And lastly,
in the airport. Goodbye is never easy.
I'm so grateful for every moment we were able to share.
Saturday, November 27, 2010
Happy Thanksgiving
From my little turkeys and I.
We have much to be thankful for always, in all things. Hope you were able to make time to count your blessings this week too. Its never to late to be thankful! : )
Saturday, October 16, 2010
A fun craft
Another homeschool Mom passed me the idea for these easy peasy little flower fairies. The online tutorial is here http://familyfun.go.com/crafts/flower-friends-667264/ (sigh, now why can't I make that link hide under the word"here" so that you just click on the word like other times!? Me and technology...but I digress...)
One of the really neat things about this craft is that it is super adaptable, to anything you want to make and whatever materials you have avaliable. I had a link to a blog with a bunch of fotos of different versions which, of course, I lost. And have wasted the last half hour trying to find, to no avail...but anyho, she had winter angles with feather wings, babies, starwars characters, black spiderman, princesses, acorn boys,...all kinds of stuff just based on this general idea.
I had all the materials on hand for our little people except something for the head, none of the stores with in walking distance had any wooden beads, so I got a couple small styrafoam balls for about five cents a piece and pierced them with an awl. They worked great!
And best of all, my kids enjoyed helping make them and now are having a blast playing with them. Making something inexpensive, cute, usable and fun makes me all shades of happy! ;o)
One of the really neat things about this craft is that it is super adaptable, to anything you want to make and whatever materials you have avaliable. I had a link to a blog with a bunch of fotos of different versions which, of course, I lost. And have wasted the last half hour trying to find, to no avail...but anyho, she had winter angles with feather wings, babies, starwars characters, black spiderman, princesses, acorn boys,...all kinds of stuff just based on this general idea.
I had all the materials on hand for our little people except something for the head, none of the stores with in walking distance had any wooden beads, so I got a couple small styrafoam balls for about five cents a piece and pierced them with an awl. They worked great!
And best of all, my kids enjoyed helping make them and now are having a blast playing with them. Making something inexpensive, cute, usable and fun makes me all shades of happy! ;o)Tuesday, October 12, 2010
Hurricane DJ
What? Haven't heard about that storm on the news? Well I have the exclusive.
She may not be walking yet, but that has far more to do with her liking the extra privilges that come with being carried than with lack of motor skills. She is almost a year now and what a kiddo! Her whole being vibrates with life, joy and vitality. Current favorite activites include, eating, CLIMBING (Yikers! Yes, that hippo rolls!), torturing sibblings, eating, snacking between meals on blue tissue paper, potted plant soil, crumbs under the table, small pebbles and anything else mom didn't get to on time, getting into cupboards, getting into the bathroom waste can, getting into the bathroom in general, trying for the toilet (but so far, mom is faster), eating, immitating words she hears, trying to copy everything she sees her sibblings do, tasting or tearing anything she can get her hands on, clapping, dancing and MOVING, screeching...and did I mention that this girl LOVES her food?!
DJ, you fill our life with a lot of fun and you always keep us on our toes. I can't imagine my life without you. I am so glad that you are a part of our family!!!
She may not be walking yet, but that has far more to do with her liking the extra privilges that come with being carried than with lack of motor skills. She is almost a year now and what a kiddo! Her whole being vibrates with life, joy and vitality. Current favorite activites include, eating, CLIMBING (Yikers! Yes, that hippo rolls!), torturing sibblings, eating, snacking between meals on blue tissue paper, potted plant soil, crumbs under the table, small pebbles and anything else mom didn't get to on time, getting into cupboards, getting into the bathroom waste can, getting into the bathroom in general, trying for the toilet (but so far, mom is faster), eating, immitating words she hears, trying to copy everything she sees her sibblings do, tasting or tearing anything she can get her hands on, clapping, dancing and MOVING, screeching...and did I mention that this girl LOVES her food?!
DJ, you fill our life with a lot of fun and you always keep us on our toes. I can't imagine my life without you. I am so glad that you are a part of our family!!!
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