can we get that ON the record please????

in one month and one day The Wee T has grown just under an INCH!!!
and since RD Jessica saw him in April he has grown just under TWO inches! 

this news makes the fact that his weight has not changed in the last 4 weeks an acceptable outcome of The Wean.
in fact, i am pretty excited that he has maintained his weight in spite of a growth spurt of unmatched proportions.

deets are as follows:
height: 2' 9.39" (approx 35th percentile)
weight: 24 lbs 1.2 oz (not sure of percentile...i think it is pretty similar to last month)
bmi (body mass index): 15.19...whatever that means. the important thing is it puts him in just over 50th percentile! 

this. is. beautiful!  Dr. S (cardio) will be extremely happy and Dr. P (GI) feels he has fixed his overzealous treatment of him.  (a year ago, his bmi was 85th percentile!  not acceptable...especially for a heart kiddo.) i think he will be able to look Dr. S. in the eye again without shame.  :)

both Jessica and Dr. P are thrilled with how well he is eating.  they love the amounts and the variety of his meals.  Jessica is determined to get him off the weany little bit of bolus feed we are still doing (4 oz a day...practically nothing).  to do this we are going to attempt to switch out one of his cups of whole milk with pediasure.  i tried chocolate tonight and he was pretty good with it.  ultimately, he still prefers water, but this will do as well as the milk i think so hopefully we will stop using the GT entirely within the next month.

i can't believe i just wrote that!

let's do that again, shall we?

hopefully we will stop using the GT entirely within the next month.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

now.  things were not completely rosey at the appointment.  we are NOT happy with how his GT site continues to look.  the skin around it is breaking down and the stoma is stretching.  he could easily end up with an infection. 

so.

we will continue a barrier cream called Cavilon and add something called Stomahesive Powder to help protect the skin. 
if this does not help there is a different kind of protective material we could try.
he has also had some success with a VERY short term removal (we're talking 30 minutes) of the GT...long enough for the stoma to start to tighten up a bit.  when they put the tube back in, the stoma should be smaller and not allow as much movement as it does now.
 
but here is the silver lining....
a child who isn't using his tube will keep the tube for the requisite 6 months before they remove it permanently. 
but a child who has chronic issues with the skin will prompt a quicker removal and closure of the stoma. 
so Tiernan's refusal to be like "most kids" may actually benefit him in this instance! 

the original desire to keep it in place until after the fontan is pretty unrealistic for Tiernan.
number 1: Dr. S. is still not 100% convinced he will NEED the fontan.  it is likely.  but he just wants to watch and wait.  have i mentioned i L-O-V-E Dr. S??????
number 2: IF he has the fontan, it may not be until he is 4 or 5!  that is ridiculous.  especially given his tendency toward irritation at the site.
number 3: whatEVER surgery he has at whatever age, IF he has a difficult time eating at first, they could do an NG.  but i shall think positively. 

so overall, this was an encouraging visit with some typical Tiernan complications.

on another topic....equally filled with awesomeness...

Tiernan. Sleeps. All. Night. Long. 

i mean AAAALLLL night.  12 hours if i don't wake him up. 

why in the world would i wake this child up you ask?  because his eating schedule has very little wiggle room. 

regardless.  he is averaging between 10 and 12 hours per night and a 1 to 2 hour nap just to show off. 

he is one cool kid these days.  ;0)

and just like that, he eats and drinks

okay.  not just like THAT.  it took a loooooooong time to get him here but it still feels sudden.  how is that possible.

in my last post i mentioned that the dietician liked the idea of trying a wean from the tube. 
for those of you who have done this before, this seems familiar i imagine.  but for most of my readers i will explain. 

research shows kids don't have an increase in appetite or eating until the tube volume is cut down to at least 20% of the current amount. On June 3rd T was still getting 480 cals per day spread out over 4 boluses.  On June 4th we just cut them all out except for the last one before bed. 

and prayed he would eat. 

and he HAS!  it is amazing. 

the process is still painfully slow at times. 

we are...[hides face in shame]...distracting him quite a lot with tv and home videos on my phone to get him to eat longer.  if it were up to him he would be done with this eating business and on to more exciting playing after about 5 minutes.  i'll admit it.  i really hate doing this.  but, as a wise friend said, choosing good nutrition is the way to go.  we can break the bad tv habit later....i hope!

some days he eats more than others, which is normal.  all of us go day to day with different appetites.  i'm really good with that.

we are discovering lots of new ways to get him to eat more at a time.  avocado has been amazing.  i routinely give him a bite of avo with a bite of meat.  historically, meat has been a challenge.  he used to spit it out every time.  that or gag.  we had to cut it into teeny tiny pieces to get him to be successful at all.  but in there with the creamy avo, he seems more able to manipulate chunks of chicken, pork, hamburger, etc.  normal sized chunks for a 22 month old. plus, since he eats that with most every bite, he will polish off HALF the avo in one meal!!!!!  that is the same as I would eat!!!  and i love the calorie punch and heart healthy nature of that. 

when we feed him a gerber lil entrees meal he is now eating the ENTIRE THING!!!! all the veggies and everything!  i love it.

he eats a full 4 oz of yobaby yogurt in one sitting.  we used to spread it out over the day...an ounce here... another there.  occasionally he will even eat up to 6 oz of that, plus other foods.  dry cereals.  fruit.  woohoo!

as fantasic as all that is though, the true victory lies elsewhere.  in his sippy cup. 

tiernan refused all bottles and liquid in his mouth after he had his tube placed.  MOST discouraging.  when gi finally decreased the amount he was getting around his first birthday, it meant he would have to take in a lot more volume on his own.  formula was the hope, but anything would hydrate.  his birthday is in august and we had a very hot month.  the day after his party, he suddenly started drinking water.  lots of it.  thank goodness for the weather.  he craved it.  for most of this year he has been very good about drinking water but anything else was met with tightly closed lips.  we worked with his ot with several different training cups.  we tried juice and watered down milk.  he wanted nothing to do with anything but the water.

but finally it seemed he was turning a corner.  about a month ago he drank some apple juice. one of those little tree top cans with a straw.  crazy (embarassing) happy dances from mommy and daddy.  :D

and then recently...since starting the wean...he started drinking milk.  before, when we would get him to take any milk it was watered down 2%.  (so it was probably more watery than skim).  but now, not only is he drinking milk, but he seems to prefer WHOLE milk!  he drinks between 4 and 6 oz at a time now.  occasionally up to 8 (!!!) and sometimes more like 2 or 3, but upwards of 10-14 oz over the course of a day.  the other day i ran out of whole milk and didn't want to skip the milk drinking for the day so i gave him skim.  he would take 2 tiny sips and then refuse!  the next day i got more whole milk and he was back up to sucking down full cups!  i'm in shock.  the good kind.

and finally...we still have to see what the gi scale says, but last thursday Jason had him in for a little ear infection and they weighed him in (fully dressed) at 25 lbs.  as of May 27th he was 24 lbs 1.5 oz.  i know his clothes could add some but he has gained some ounces at least during the course of this wean!  this is super exciting to me! 

so i am not sure where we go from here.  he'll have a follow up with gi soon i imagine.  i don't know if they will suggest we stop all tube feeding at that point.  i hope so.  i know the tube will remain in place for some time to come.  just in case.  when it was first placed, there was even talk about keeping it in place until after his fontan surgery.  just in case.  i don't know.  that tube gives him so much irritation.  as we speak it is raw and bloody around the stoma...sorry for the description.  it leaks a lot and button buddies or split gauze don't seem to help stop that.  his fontan is a distant event (we hope).  around age 4 or 5 if we are lucky!  i don't want to have that damn button causing him pain and irritation if it isn't even being used! 

anyway, we are not home free, i know, but it sure feels amazing. 

last year at this time he was 100% J tube fed and throwing up  more than 30 times a day!   it honestly seemed like we would NEVER see the end of tube feeding days. 

and now, it seems, the end is just around the corner! 

(here you SHOULD be seeing pictures...but blogger is not cooperating i guess.  maybe later.)