Wrapping it up

I had an entire list of ideas that popped into my head in relation to Feeding Tube Awareness Week. But life has rolled on and I just wasn't able to make time to post any more of it last week. As I wrap this up in my mind, I was trying to decipher, just what is the important part in it all. Honestly. I am not sure I really know. It just kinda seems to depend on the day.
I jotted down a phrase at one point, "Ask, but don't Judge. Look, but don't Stare... & Please Don't Touch."
I have been asked countless times, "Wouldn't she eat if you just stopped giving her tube feedings?" Depending on who it comes from and the tone of their voice it can be anywhere from a sincere question born from a desire to understand, to the most hurtful insult I have ever heard. But just so you know, the answer is no. Unfortunatly it doesn't work that way. And I COULD write a book on all the whys and wherefores, but I won't. (at least, not for now)
A while back in the swimming pool dressing room a little girl said a little too loudly, "Mommy, what is THAT?" She was pointing at Mic's tubie. The Mom in question glanced up and just as quickly adjusted her gaze awkwardly to the floor, looking like she wished it would swallow her whole. "I don't know" she whispered in her daughter's ear. I smiled at the wide eyed child and gently told her that it is a little tube that helps Mic eat, assuring her that it doesn't hurt, as she looked a little worried. Its awkward. All around awkward. I suppose the mom might not want to ask what it is because she has no idea how sensitive I am about it? I don't like the idea of leaving the other child (or parent) hanging with the question. But it can be difficult to answer if you don't ask. On the other hand, I don't like the idea of overly invasive questioning either, especially if I get the idea that you are passing judgment, rather than sincerely interested. And I Hate that so often Mic gets talked "about" instead of "to". But we all get stretched a little through it and simply do the best we can, I suppose.
Then there are other children. The kind whose simple, honest curiosity is more than they can bear, and as is so typical of kids, its like if they can't touch it, they aren't going to be able to process it. Thats tricky. I don't know if your hands are clean, and in the end this IS a meal. "No, please don't pull on that, it needs to stay right where it is", yes, I have actually had to say that with a sense of urgency more than once. Then there was the time a curious child had to get so close that he accidently spilled the food...on the church carpet!!! Argh! And we were already low on calories that day.
All this leads to one other thought, and for now, I close with this. We are all on a journey in life. An exhilerating, terrifying, surprising journey, full of all sorts of twists, turns and unknowns. Every unexpected challenge is an opportunity to grow. And this tubie truly has grown us in many ways. It has allowed my child to grow healthy and strong physically when things might very well have been completly the contrary. I often catch my breath in wonder as she jumps off a step, runs accross the patio or dances to her favorite song. I'll never take it for granted. I can't just forget that the "experts" said, "she might not...".
But we are also growing in character. My dear fifth grade teacher told me often, "You can let it make you bitter or better, you have to choose!" And isn't that the truth in all challenges. There have been moments that I have struggled with a sort of bitterness. I periodically wrestle with the "what might have beens" and "why us". But in the end, I choose Better. More patience. More knowledge. More character. More strength. Becasue this is not the last nor the biggest of the curve balls life will throw us. I know that. And with the help of my Lord, I'll contine to choose, "Better". Your kiddo may or may not have a tubie, but I know you have enormous, gigantic challenges of your own, perhaps far far bigger than a silly little tubie. Hang in there, dear friend! Let go of bitter and ask HIM to help you choose "BETTER"...you won't be sorry!

Kidnapped

by life! I really wanted to post every day this week. That would have been a huge accomplishment for me. But these last couple days have just been too much. Heres another good link to tide you over until tomorrow.

Here it is!

...yesterdays link! Its amazing how sleeping on it can bring it all so clear. I knew exactly where I had that link, I just pumb forgot. Sooooo... Here you go! A co-member of the blenderized diet support group of which I am a part has created this blog. The list on the right titled "Pages" has some very interesting reads if you wish to dig deeper. He is an adult with a tubie and an amazing sense of humor.

Meet a Tubie

So, perhaps you are one of the millions out there who have never seen a g-tube before? If so, don't feel bad, in fact, you can feel great, because you're about to see one, while most of the rest of the millions are missing out! ;-)
Theres not a lot of apparatus to it, but one very important piece is the extension tube. This is the piece that connects to a syringe (cath tip--no needles involved) on one end and the tube in the tummy on the other end. They vary by brand, types and lenghts. Heres two examples:

Bolus.

Y-Port.

See that aptly named little port on the side, its supposed to be for medicine. I'd love to find someone out there who actually uses it for that. In my world its good for one thing: releasing the suction on the syringe so I can refill it. And its BAD for one thing: Blow outs! We've feed the bed, the stroller, the floor, our jeans, to name a few, because of that there darn med. port

Drumroll........

And then there is the button itself. Again they vary by brands, but we've only ever used one brand so thats what I have to show. The balloon is what anchors it so that it does not fall out of her tummy, so this is how it looks when it is in place...

And this is how it looks when I am about to stick it in or pull it out.

They are disposable, and yes, I change them myself at home.

And THIS is what it looks like from the outside, when in place. Look at that gorgeous skin around her site! (more on that a different day)

The little tab on top lifts and the extension locks into that hole on top. The white valve to the left is where I inflate and deflate the baloon.

Here we have the whole get-up in working action.

"What's up with the red stuff in the syringe?", you might ask. Well, it just so happens she had red beets in her supper today.

One other little FYI. The hole (stoma) that the tube is placed in is very time sensitive. Thank God, we have yet to lose a button, but I know some families who have weathered that experience, and they say the the hole closes down in minutes, or in up to a couple hours if your lucky. Dilating the hole is not plesant.

Link of the day: I had a good one and ...I can't find it and its late! grrrrrr.... if I find it later I will let you know

Memory Lane

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

Q.O.T.D.

(after a little burp took me by surprise)
Me: "Excuse me!"
Mic: "You're welcome"

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!"

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.

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!

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.

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)

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.

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.

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!

...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.