Feeling my way through the dark...

The "unknown" sometimes places me in a kind of allegorical darkness.  Six years and some odd months ago, we entered an unknown.  Today some of the emotional turmoil is relived as my mom enters the world of tubie feedings.
 It can be so easy for a medical professional to reason out the need for a tube. And place it. Period.  And that medical professional is truly doing right as best as he or she can define it.  But when the intended use is defined as "short-term" the patient and caregiver are suddenly submerged in a reality clash. Who helps us move from A to B.  How does one get from tube feeder to oral feeder.  So simple a question.  So complex a reality.  One highly qualified therapist said, "Hunger is an elusive beast, at best".  I can personally atest to the truth in that statement.  A mom of a former tube feeder explained that a child cannot develop oral feeding without an internal motivator.  The motivator she names?  Hunger.  So it becomes a monster hunt!  How to trap the elusive beast without irreversably affecting the life and health of the subject at hand!?  How safe must we play?  How far can we go? Who is qualified to direct this symphony, to orchestrate all the players, and to set the rhythm?
These are the questions bouncing around in my tortured brain today.  For my child "short-term" has been six years and counting.  The medical professional who knew best for my precious infant will never know how the rest of the story goes.  She is isolated in the NICU world giving no followup for her decision.  Was she wrong?  Was she right?  I honestly do not know for certain.  Pondering it will only drive me mad.  The past is behind us.  We must press on ahead.  We must fight the good fight.  We will finish this race.  But......how many more years will it take?
Mom has been plundged into intimate knowledge of this dilema.  Previous oral experience is on her side, for that, I am greatful!  Lack of hunger is a persistant struggle.  The medical professional told me, when I tried to question her about concrete support for mom in the transition from tube to mouth (and I quote), "...hopefully over time she will start eating".  I hope so too!  However my hope most certainly is not based on this uncomforting  non-answer.  I choose to BELIVE it will be so. This, because I believe in Father God, who helps and heals.  In His own way.  In HIS OWN TIME.

Mission Impossible

  I have a pair of very special dresses.  When Mic was a babe she wore the little one and her cousin wore the big one, we took them to the studio and had some pictures taken.  I thought it would be neat for my girls to have some picture taken in them too, since the sizes worked out so perfect.  For one reason or another a trip to the studio is just not coming together, so I decided I'd better at least take matters in my own hands and get some home pictures.  We are in dire need of an updated family picture too, so my mission became: Get a good picture of all three children while the girls are in their dresses. 

 Really.  How hard can it be? ...I took about 50 pictures. Don't worry, I didn't paste all 50, I think you'll get the idea anyway! LOL

So, my son was traumatized with taking the sock off and besides that, no one was looking.  "Its ok, we are just starting out anyway."  "Come on guys, look at the camera!"

 "Put your hand down, lean back, look this way, ...Smile!"

 "Now your just being silly!"

 I did get some individual pics that were quite rescuable...

 "...but I really did want you all together, lets try again"

 The melt down begins...

 and intensifies...

 Maybe the floor will work better?

 "Ha! I got you all three looking at the camera!!!"

Victory!?

...but you can't really see the dresses... ...sigh...

 Maybe sitting this way?

" DJ, ick!"

"...I give up."

El Dia Del Niño

Here are some pictures from Children's Day. We had a nice quiet celebration for the kids with some friends. It was so very enjoyable. I forgot the camera, but DH took some for me on his cell and that made me happy as a clam.

Since we were the first ones there we took some time to sing while waiting. Mic was fascinated with their child sized guiter...we may have to start saving!

The weather was perfect for the wading pool, and that kept them occupied for a very long time.

Before we went home they decorated some picture frames.

Even DJ got in on the action.

Concentrating hard...

And sharing nicely (for the most part)! ;o)

Before I end, I have been meaning to post mom's carepage link, so let me do that. You can find her under "Dot's Reboot" or "Westover". You do have to become a member in order to see her page, the subscription process is simple and straightforward. The nice thing is that she is able to see who has been checking up on her and I think it is encouraging to know that people care enough to be checking in. So with no further ado heres the link. https://www.carepages.com/login

Good Mornin'

I thought the scene at our breakfast table this morning merited some picture taking. ...I do wish I had a better camera, the quality has much to be desired on some of these, but you'll get the general idea.

First, my mister. Yes, that is candy before 9am. I'm not sure what got into me this morning, I would normally never allow that. In my defense, he had eggs first.

That cute little smirk says, "Yes, I feel much better this morning than I did yesterday". Yesterday my poor little girly ran a fever most of the day, here's hoping it truly is gone today.

Note the little toes tucked up under the tray. That's her favorite way to sit, its a wonder they don't cramp! A closer peek at the bedhead. My crazy kiddo who insists on wearing a hat in tank top weather. As soon as those last three bites of pancake are gone, she gets part of the above candy. The motivation definatly helps! Self portrait of the photographer, who never ever has a minute to herself, incase you couldn't tell! ;o) (I didn't invite anyone to join me, I simly turned the camera towards me and look what happened!)

P.S. For those following Mom's progress, she will not start treatment today after all. Doctor's felt she needs some further testing on her heart. Results could affect amounts and type of chemo needed for the stem cell transplant. We continue to trust in God and hope for healing and His best.

Mom

I won't deny it. I have been puposly avoiding this topic. ...I can't explain it to myself, let alone anyone else. It just is not coming naturally to put it down in black and white. So allow me to go back and resume the last year and a half or so in a short paragraph.
Mom has suffered chronic bladder infecction for...a very, very long time...I don't remember how long, so I won't lie and make up a number, but its been way to long. This finally led to testing, which led to more speculation and testing,...and probably even more testing because it felt like that part took half of forever. We prayed fervently for healing while doctors tossed around posabilities like Multiple Myeloma...the cancer that took Dad. Finally a diagnosis was made. Doctors declared a very serious disease called Amyloidosis. If you have no idea what that is and would like to know you can read about it here. Another wait while specialists communicated, referals were made, insurance approved, etc, etc, etc. And that brings us up to date.
The treatment chosen will be a stem cell transplant. Mom has successfully undergone the harvesting of stem cells from her own body. And is doing her best to be as healthy and strong as possible so that the risks are lower when she is admited to the hospital on March 30. That day will be the start of an indefinate hospital stay during which she will undergo high dose chemo and then the transplant.
Please join the many lifting her and all of us up in prayer. We are asking God for healing, sucess of the treatment, protection from infecctions during this very delicate time (an infecction could potentially take her life), and that the side effects be minimal. We are also asking God for strength and peace for the whole family, this has not been easy on anyone.
I am not making any big promises as far as updates, but I think that my sister is going to open a caringbridge page with more frequent updates, so I will post that link when I get it. Thanks for joining with us in intersession.

Shameless Bragging

Well, OK, I don't really want to brag. ...but I am afraid its going to sound like it. However, I decided to take the risk and post anyway. ; )
This is a picture of my son's favorite lunch. His peanut-butter and jelly sandwich. He would happily eat them for every meal if I would allow it.
I have a vague memory of hearing someone say something one time, about making all the ingredients for their PB&J Sandwich...or wishing I could. I can't quite remember just how it was, but what I clearly remember was coming to the conclusion that there are just some things out of my reach and that is one of them. End. Of. Subject.
...or so I thought. And all this time later...it turns out not!!!!!

Yep, its true all three ingredients are 100% homemade right here in my own little kitchen. And I won't lie. I feel quite proud of myself, I do. For it has happened little by little with a lot of work and sacrifice and the result has been very rewarding. ...Ironically, what is probably easiest for many people, the Strawberry Jam, was the biggest stretch for me. ...But I finally figured out how to make it work (I can't get me hands on Pectin here) and I wrote it down so I won't forget!

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