POP!

I knew the balloon could "go" but in over seven years its never happened to us before.
I expected it to just sort of deflate.  This absolutely shocked me!  It looks like it exploded!

     So, yesterday DH and myself took the unusual luxery of some "alone" time.  Being the practical people that we are, this did not mean a  romantic, candle-lit dinner nor anything else of that sort.  It simply meant that we went grocery shopping together--alone! (insert deep sigh of sheer exhuberance)  We took our dear old time and a couple hours later were just barely out of the store when the cell rang.  It was my MIL.  Could we please hurry home, the tubie was out of Mic's tummy!  Hurry we did.  About 20 minutes later I sailed in the door, washed my hands, grabbed lubricant and my back up kit and ushered my daughter over to the couch.
      She did not want to lay down.  I patiently explained she must in a most calm manner, but all the while my insides were anything but calm.  I know that the stoma (hole) shuts down quickly.  I know that if I didn't get the tube in nobody would, by the time we could get to even the nearest ER it would be completely closed.  I know that perhaps if we focused every hour of every day on feeding PERHAPS we could pull off the solids.  I also know that she doesn't not yet have the capacity to keep herself hydrated.  In two seconds I had our worst case senerio visualized in my head.  If I couldn't get that thing in tense months of endless nagging and surely at least several bouts with IV fluids were in my near future. As I kept myself with a completly calm and nonchalant exterior and my insides boiled with the hurry I knew was necessary, I felt the tension might snap me in two.
     She was scared and tense.  I knew tense would only make it that much harder to get it in.  I tried to get her relaxed.  I tried to get her to do breathing exercises with me.  I tried to get her to put in in herself.  Nothing worked.  Finally Papa pinned her, and started to pray outloud, and while she screamed, cried and writhed, I tried to work quick and precise. I got it in position and went for the insert. Nothing.  Tried again.  It entered about a third of the way and stuck.  I added a little more presure.  It didn't budge.  I gave it just a bit more and was already starting to resign myself to the fact that it wasn't going in when suddenly it gave.  In it went!  And that was it.  I was almost dissappointed and deeply relieved all at once.  But mostly just exhausted.  And as everyone else moved on and things got back to normal, I quietly withdrew and fell apart.
     In our Bible study this week Beth Moore highlighted how David was both tender and strong.  We spent some time pondering those qualities, what they really mean, and the importance of their simultaneous development in our lives.  As I sat and cried for all the things I felt and didn't feel and couldn't even understand, I seethed a bit.  I don't want to be that strong!  I don't want to have to do this!
     After supper was over and the usual before bed routine was done, it was later than usual.  As they were crawling in my son said, "Mama, will you read the Bible to us?".  It was said with such longing and so sweetly that it made my heart sing.  Of course I will!  We read a Psalm and then I talk just a little with each of my children individually.  I had to tell her.  She had to know.  I love her.  I only want the best for her.  I will never hurt her to be cruel.  She has heard it before, but does she really understand?  I told her how sad I felt.  She looked me in the eyes and made that silly little happy noise she makes when she isn't quite sure what to say.  Yes.  She did understand.  She knows she is loved.  And at last I rested.
   

I thought I would end with something fun.  This is a small sampling of our first day of school

 2012-13 photo shoot.

Inverted Reality

Jicama sticks with refried beans sandwiched in the middle,
HER idea, and nothing short of a miracle.
Silly girl!

 This post has been over seven years in the making.  Let me begin by sharing some facts with you that you may or may not remember.

• Mic has been feeding tube supplemented since birth.
• Her g-tube was surgically placed when she was 14 days old.
• At three months of age she reached a whoping total of 70% oral feeding for the (short) time that she had a metal device in her mouth.  The device was used to prepare her for lip surgery, she used it to push the nipple off of since it ran right accross where her palate should have been. At surgery the device was removed and her oral sucess plummeted.
• She was (to our great dismay) 100% tube dependant before she even reached her first birthday.  Those were tramatic times with catastrophic structural change going on in her mouth.
• October 2008 we had the TREMENDOUS blessing and help from Lorioux at the Toft House.  We spent two weeks there in intense feeding therapy.  Mic came out aprox. 1/4 oral and still 3/4 Blenderized Diet.  Progress, Yes!  Though not exactly the numbers we were dreaming of.  But we came out armed with knowledge, empowerd with better understanding, and as Lorioux said, "a therapy that goes home with you".

...and then for soooooooo very long it felt like nothing happened.  Of course, a LOT was happening, but it was like watching a flower grow.  Impossible to percieve.
Here we are.  2012!  And I finally have some thing to say.  Something so big and so huge that I can't quite wrap my head around it.  I can't even put a feeling to it.  Its bigger than feelings.  On May 18, 2012, we started a new calorie cut trial with Mic.  And with its sucess her reality has been inverted.  (Drumroll).  Mic is now 3/4 ORAL and 1/4 Blenderized Diet!!!!!!!!!!!!
Yes, its O.K. for you to jump up and down and whoop and hollar, go ahead celebrate with us, this is HUGE!  At 75% oral, this is her greatest oral success since birth.  I am so proud of you, baby girl.

Gentleness

"Since God chose you to be the holy people he loves, you must clothe yourselves with tenderhearted mercy, kindness, humility, gentleness, and patience."  
Col. 3:12 NLT

I saw this art idea in a picture on a neat little FB group called Learning Without Borders.  I loved that this was an art project teaching gentleness, and that we can just dump it back out in the yard when we are done with it instead of filling a land fill with our scraps.

And trying to do this with the children I wasn't sure whether I ought to laugh or cry.  I heard myself..., "DJ! Careful! Your going to spill the whole thing".  My tone of voice was anything but, "gentle". ...I think we will have to repeat this exercise every so often, and maybe, eventually we will ALL learn something.  ; )

So Pretty!

And below are the bonus pictures.  The Angry Birds craze has reached our home, I fight it.  I really hate video games.  And then we came up with a way to embrace it. I love crafts and creating together and I love games that create interaction.  So I checked some online tutorials for sling shots and went to the craft store for some puff balls.  My kids have no idea sling shots use rocks... ...and lets keep it that way OK? 

Proud of his new sling shot

"The Birds"

The whole set

 You can't tell what she drew a picture of!?
Why those are angry birds, of course!

I just love...

...listening to my kids! : )

Today they were looking at the atlas:
Mic: Hey, where is Mexico?
McQueen: Um, in the world.

sometime later they go to the end of the atlas.  Mcqueen closed the book firmly and proclaimed,
Q.O.T.D. "Thats the end of the world!"

Today...

Started off a bit rough:

• I have a sore throat.
• I had to stand a long time in the milk line. (back story: we get discounted milk through a gov. program which I feel fine about becuase it is not free, they at least break even and probably make a pretty penny on it, in addition to creating jobs...however, if there is a line a block long, like today it means somebody ISN'T doing their job!)
• as I was walking home from the milk I got to say:

          QOTD: "Next time knock on my door and for three pesos you can use my toilet, but PLEASE don't do it on the sidewalk right outside my house"
         
          I wish this could qualify under the catagory of "things I thought I would never say", unfortunatly, because of where I live, that is not the case.  It is, however, something I certainly WISH I never had to say! ...SOOOOOOO gross!

          Happily, things are starting to look up:

• I made zuccini pancakes for breakfast--a family fav.  And my oldest said to me:

         QOTD #2: "Mama, you are such a good cooking"
        ( She meant cook but couldn't figure out how to conjugate it.)  And warmed me from my heart clear down to my toe nails!

• I get to talk to family on skype later on today.  I am SO thankful for skype.  And even more thankful to be blessed with such a wonderful family.
• And while we are talking about technology and wonderful people...I am so thankful for the positive role models the Lord has allowed in my life.  This week in particular I have been challenged and blessed by three people.  Some of these people know me just a little, and some not at all, but becasue of technology, and their willingness to be transparent on a level I wouldn't even know how to begin to be, they are impacting me in ways they can't even imagine. So, thank you, Lord for the lives of  Dorcas Smucker, Beth Moore and Mike Richardson.  I am blessed beyone measure.

          ...hmmm, I guess today isn't so bad after all.  A thankful heart truly is good soul medicine!!! : )

The Dive

Ok, so its been almost 5 months since I've blogged.  It felt like a lifetime to me and to be honest, more than once I considered simply closing the blog and calling it good.
It could be attributed to many things: priority shifts, sheer exhaustion,  lack of time (always), lack of inspiration (sometimes), homeschooling, recognizing my limits, being busy...   In the end it doesn't really matter.  The amazing thing is this, according to my live traffic feed, you continue to visit me!  That astounds me, and is a profound honor, really.  So, I suppose as long as that contiues to happen if I have something to say and time to say it I will.  ...and when I can't, I'm really sorry.  Sometimes everthing but the absolutely essential just has to get tossed.
So, I do have something utterly important to share. (drumroll, please) (no, I'm not prego) ; )
We are entering a new era in Mic's oral feeding progress!!!
The condensed version goes something like this. ...I am (finally) becoming more comfortable with following my gut on this journey (in addition to my over 7 yr. of experience), and I finally "felt" like it was the right time to try a calorie cut again.  This is done by giving her fewer calories per day in her tubie.  We decided to eliminate one of her three daily tube feedings.  Since I am all about practical, rather than count every single calorie and have to weigh every gram she eats (which would be supper stressfull, pressurized, time consuming and completely unrealistic in my current reality) we set up some simple safety net rules pertinant to Mic's reality. (ie, gut funcioning regularly, not losing more than x amount of weight, ability to ward off illness, ect).
Aaaaaand...about a month into it its going really really great so far!!!!!!!!!  I can hardly belive it! (sorry, Lord, I know...lack of faith...)  THIS. IS. HUGE.  I don't know if I can really explain what a big deal this is.  But to put it in numbers I basically took away a fourth of her total calorie needs each day, and so far, based on our criteria, she has been able to compensate for it orally.
I will confess that if I were to eyeball what she is eating orally, she IS eathing more than she was but maybe not "THAT" much more.  Or in other words, if this were a calorie matching exercise, it might have failed already. I continue to watch and pray with a critical eye.  But really do believe we are onto something good!
Please continue to lift us up to the Father.  All your prayers, encouragement and support have NOT been in vain.  You are a part of this step forward and we are just a little closer to victory!!!

Disclaimers: This decision does carry its risks.  I will not go into all the reasons why it is finally right for Mic, but I will say that even some months back it wouldn't have been right.  No part of this entry constitutes medical advice for anothers situation.  The process towards oral feeding sucess is as individual as each person involved.

QOTD

At supper during that rare silent moment when everyone seems lost in their own deep thoughts...
Son: Hey, Mom, you know what?
Me: What?
Son: You know, my friends are people too.

Ha, ha! I think maybe he meant they are growing up too (like him).

Where learning comes to life...and other pics

My son was outside playing today when I heard him hollar, "Mom! Look! there's an animal".  Now let me just say, last time he told me there was an "animal" in the bedroom it turned out to be the fattest, largest, most hideous spider that I have ever seen (and I've seen some doosies).  Seriously, it was huge! So, with that in mind I hurried out to see what sort of beauty he may have found. There on the wall of the house was the largest, fattest, most fascinating caterpillar I have ever seen!  We love a Magic School Bus DVD about caterpillars and butterflies.  It teaches how caterpillars have markings and movements that help them look like a snake when they are faced with danger.  As a child, I played with tiny and cute caterpillars out in the field.  In my life expierence I had never seen anything remotely similar to what the DVD teaches.  But today we got to meet one up close and personal and watch it in action!  I gently relocated it to a tree and then had a photo session.  Every time it felt nervous it would raise and sway the front part of its body, causing the effect of a snake head.  Amazing!

Yes, it was large!

See the "snake head"?

 While I was resizing the caterpillar pictures, I saw more pictures that would be fun to share, so I kept going.  The next two are espcially for my SIL, Angie.

Meet "Candy"

Our new neighbor

Cuteness!

Good times at English VBS 2011

Mic's current favorite past time.
Pestering...errr...playing with the dog.

Sticks, rocks and making noise =  Macqueens idea of a good time

"chocolate eyes"

The latest extreme sport of choice?  Mountain climbing!
...all in the safety of our own yard.

Pure Silliness

These pictures really don't need much explanation beyond the title to this blog post.  

I get a kick out of my silly kiddos!

(P.S. Mic was independant wardrobe designer for this playtime)

...I will say that the children's toy industry has us wrapped around their little finger.  Society as a general whole will buy about anything that we think might make our little tykes "happy".  And it is easy to forget that good, clean fun and healthy entertainment is often the least expensive and most ecological.  The list of household items that can help entertain (and educate) the children for hours at a time is almost endless.

Here's a partial list just to kindle your creativity: buckets, plastic tubs and basins, cardboard boxes of all sizes, kitchen utensils, soap, sponge, rags, hats, mittens, scarves, clothes and shoes from mom and dad's closet, scrap paper, scissors, spools, string or yarn, egg shells, raw rice or lentils, water, cotton balls, junk mail, plastic containers and lids from the kitchen, empty plastic bottles, empty egg cartons, muffin tin, pillows, blankets, tape, glue, cardboard tubes from TP, paper towels and wrapping paper, rocks, leaves, scrap wood, flowers, weeds, dirt, tin cans with or without lids, books, map or atlas, empty flower pots, magnets, hand lotion, measuring cups and spoons... ...and much, much more.  Then of course there could be an even longer list about the infinite ways of combining and using said material for learning and play...but for now I'll leave that creative process untainted for you by my ideas. Happy playing!!! ; )

Beyond Grateful

There are many times in my life when I am too caught up in the tangible and so unaware of the "other" reality.  The invisible. Spiritual forces at work.  GOD.  The last several weeks the opposite has been true.  I can sense that the hand of the Lord, His mercy and favor has permeated every area of my reality.  I can't descibe it.  Words aren't quite enough to explain His enveloping presence, invisble, yet REAL, in every detail.  No, things aren't perfect, in fact some things are down right hard.  Its not about a rose colored lense.  Its about consuming consciencness of the Lord's presence.  I am so thankful to Him.
Its all been quite a whirlwind.  Mom was released to come home on  Tues. June 28.  I spent most of that day at the airport trying to get my hands on a ticket.  It turns out that Portland must be a popular summer destination.  There literally were no seats left to be had at a reasonable price on any airline to Portland.  Anywhere else you'de like to go in the world, no problem. Portland, "I'm sorry, we are booked solid".  But the Lord most certainly knew I longed to go and backed my longing.  I did finally get a seat I could afford!  On both flights going I had DJ on my lap and there was not one single unoccupied seat in the entire plane.  It was interesting, to say the least.  And got a little bit hairy when she started her piercing scream. I was so thankful to be sitting next to gracious, kind people, and will never again so judge that other person with the screaming child on my flight.  Sometimes there really truly is just nothing a body can do about it.
My week with Mom was a gift from God.  One that I will forever treasure in my memory.  It was a blessing for everyone involved.
Mom is "past the worst" yet still with a very long road ahead.  A tough spot to occupy in this "hurry up" world that we live in.  She continues to deal with extreme exhaustion, dizziness and nausia at times.  There is little she can do to hurry this recovery as much as she would love to.  So we mostly spent the week, trying to help make the waiting a little more enjoyable and less tedious.  A worthy task, and also some much needed rest for my own soul. Ahhhhhhh.
I cannot mention Mom's recovery without expressing gratitude for one very special person.  Bob.  Bob, I want to publically thank and honor you for sticking by Mom's side and offering her the care she needs night and day.  I am so thankful that God brought you into her/our lives.

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.