there's no place like home

especially for a kiddo with eating issues. 
wow.  [shakes head in amazement]
last tuesday we returned from tiernan's first road trip to montana.  you can read more about that on the TnT Brothers blog if you like. 
prior to leaving, the wee t had made such fantastic progress on the wean from his GT.  he was regularly eating and drinking over 1000 calories each day all on his own.  he was doing so well, in fact, that we had eliminated his weany little 120 mL bolus altogether for the last 2 days before traveling.  he was sleeping through the night.  all was well.

until...
[cue dramatic music]
we embarked on our epic adventure.

and then he went on strike. 
he stopped eating most everything.  it was a daily battle of the wills to get him to eat things he normally gobbles up.  our big ticket items like yogurt, avocado and cheese were pretty much unacceptable. 
he would eat crackers, fruit and IF i followed him around outside i could sneak in bites of cheese and fruit bar while he was on the go.  oh, and he drank his milk. 

the other problem was he would get mad by the end and we were so desperate to get food in him we kept pushing and that inevitably resulted in massive pukeage. 
and it took j and me a surprisingly long time to realize that he is, in fact, in charge of what goes in his mouth and if we force it, we will be sorry.  and also covered in puke.
by the last 3 or 4 days of the trip we had relinquished control and tried to trust that he would return to his previous eating patterns upon return home.

this whole process was stressful and frustrating and messy and yet, i have come away having learned a great deal about my child. 

are you ready for this?

he is a normal 2 year old when it comes to his philosophy on eating.

he wants to be in charge and do it himself.  if he can't do that then forget about it. 

i had two really wonderful visits with some dear friends during this visit.  camille and emily.  they are two beautiful and fantastic mothers from whom i got much encouragement and understanding. 

Camille:
we met when I was a first year baby of a teacher at Big Sky High School.  She was a junior in my advanced girls choir.  we got along so well that when i moved out to washington we have become friends via fb.  (love that fb)
anyway, she has 2 gorgeous little girls, the youngest of whom is like tiernan's female alter ego, only without the heart stuff.  man.  she is so similar to t with her lack of eating.  although, where tiernan will eat better with distractions, this little one can't have ANY distractions.  zero.  a phone ringing during meal time will derail her.  camille looks at going on vacation as a time when her baby will lose weight.  ugh.  so frustrating.  ultimately, i must say, camille is amazing with her and inspiring to me.  it is so helpful to have a dear friend to commiserate with throughout these experiences.  fortunately i have several.

Emily:

we have been friends since high school.  she has 3 beautiful and creative little girls who all just eat, eat, eat!  her youngest is a few months older than tiernan and she was an absolute marvel to me!  the girl can pack it away!  awe inspiring. 

see that bowl there?  full of cereal? that little one ate all of it and then a second helping!  now, emily said that is unusual...she was really hungry that morning, but even one bowl full is so cool to see.  i think tiernan was impressed too.
not enough to copy her, but impressed even so.

at one point a question was asked...
is is difficult to see other kids eat so well?
interestingly, i can't recall if emily asked me this or if i asked myself.  hmmm.
either way, the answer is yes.  and no.  watching a child eat and really enjoy food is exciting to watch and super annoying at the same time.  honestly though, i get more joy than frustration. 
and watching emily's approach to mothering reinforced what i was already beginning to suspect.
i need to let tiernan do it.
and since arriving home, he has...more or less.
by our 2nd full day home, i had already eliminated his bolus again.  we are officially 5 days into the complete wean and he is doing great.  mostly because we are trying to let go.
he is so much more willing to eat things that we put on his tray if he can pick them up and we just back off.  i am even finding he needs less and less tv to distract.  he hasn't thrown up once since we got home. 

*******side note*******
i suspect the altitude in missoula messed a bit with his tummy.  could it be that his heart had to work harder and was affecting the way his entire system worked?  don't know.  a question for Dr. S

so, it appears we are back on track and though we had a wonderful time in missoula, i do NOT intend to leave home very often. 

he really likes to just have his bag and reach in to get his treats.  :)

he has discovered the joys of Flynn Sauce aka ketchup.  the fries were okay, merely as a delivery vehicle for the ketchup.  and if he couldn't do it on his own, he wouldn't do it. 



beads of courage

we got home from 10 days in montana yesterday.  (and that will be a whole other post)
tiernan's "beads of courage" had arrived!
the following is a photo series of all his beads and what test, surgery, iv, milestone he went through to earn them.

if you can't see it, the little bag they sent has yellow sports cars on it.  way cool!

All of his beads.  Every color and shape represents something he has endured.

These are special selection beads that represent 3 significant or extraordinary events.  The purple one is for his initial diagnosis.  the olive and blue swirly one is for the night he crashed and was reintubated and the light green with orange bubbles is for the tachycardia episode he experienced following his G tube placement.  He has been through so much!

These 3 beads represent being discharged from hospitalizations.  They are handmade by members of the International Society of Glass Beadmakers.  a few of them came with these sweet notes of encouragement, making them all the more treasured.

this bead was made specially for Tiernan and sponsored by someone inspired by his story.  truly precious to us.

the next groups of beads are estimated numbers of the different experiences.  i am sure they are low estimates but the impact is stunning nonetheless.

80

75

33

52

15

3

30

50

15

and these glow in the dark.  :)

40

3

these represent most of the first 5 months of his life.

11

2

3

10

these are purple, by the way.  the color did not come through.

3

these are for him learning to crawl and walk after all that hard work at OT, switching from his GJ to his GT feeds and starting to eat and drink orally.  soon i hope we can add one for getting rid of that button all together!!

5

these little pink beads represent some of the most terrifying days of our lives.

4

GT placement, GJ placement, wound cleaning surgery and 1 for good measure. 

(i cannot think of what it was.)

4

these are dark green.  again, the color did not show up. 

5

2

3
i look at these as the 3 big ones.  there have been several other admissions, but not overnighters.

so 448 beads later, jason and i sat together on our couch and strung them all together.  after much discussion, we decided to group them all together by type rather than go with the random method.  while i like the random look better, jason made the excellent point that the impact of seeing all of those beads grouped together is more intense.  so that is what we did.

this morning when he woke up he knew just what to do with those beads. 

he loved the sound they made on the floor.

i cannot explain what these beads mean to me.  they are this beautiful representation of all the pain and fear and triumphs our brave boy has been through in just 24 months of life.  this strand will grow.  unfortunately it will likely grow much, much longer.  but i pray these serve as the intended reminder of just how tough and courageous he is and has always been.

I think this blog title will need to change soon...

December 5, 2009...starting at this point Tiernan has been fed in some way, in varying volumes through a tube.  NG...NJ...GJ...G

July 5, 2011...Tiernan ate 1, 118 calories...
all. by. him. self.
His G Tube was not used at all.  Not once. 
For the first time in exactly 19 months Tiernan did it all without a tube. 
AND, I might add, with normal food.  No calorie packed Pediasure/Boost/etc...
Normal. Food.

A milestone of epic proportions.