Tuesday, August 24, 2010

Tripple Dog Dare

Today was probably the best GI appointment we've ever.  No one melted down when their weight and height were checked, though there were some tears from Cameron at the blood pressure check.  Then there were no tears when the doctor walked in, and she was even wearing her lab coat.  Instead the doctor was greeted with the sight of both boys who pulled up their chairs and sat at the side of the examination table like they were sitting at a buffet table with a nice decorative paper runner tablecloth covered in their own crayon drawings.  They each had a sippy of juice and were chowing down (or in Evan's case sucking the life out of) on goldfish crackers.  A complete 180 from where we were when we started seeing our GI.  The doctor got a good chuckle at this sight.  Another reason why this visit was so phenomenal was that the boys were so contented to sit quietly on their chairs and EAT that my husband, the doctor and I were able to chat and hear each other without shouting and there was not even the tiniest hint of stress or anxiety from anyone in the room.  A very big first for us all.  And almost as easy as taking one child to the doctor.

Four weeks ago the GI had us cut back 75mls of formula that is fed through the pump to each of the boys.  If that worked to stimulate more eating but not cause weight loss we were to decrease another 100mls after two weeks.  This did work for Evan because within a week he'd started to eat all four ounce jars of some of his favorite stage two purees.  It did not work as well for Cameron.  Then Cameron got sick with what our pediatrician thought was a second case of Roseola which turned out to be some other kind of virus and naturally his desire and willingness to eat tanked considerably.  Then one week after Cameron's fevers subsided Evan came down with a slightly worse form of the virus and obviously his eating went downhill then as well.  And as all parents of feeding disorder kids know, getting them back to eating the way they were before being sick is like stirring a pot of cement until it hardens.

At the moment Cameron is at the 50% for weight to height for his adjusted age of 25.5 months and 25% for his actual age of 28mos.  Because of this, even though he's not eating the volume his compliance is great and we'll be cutting the volume of formula he gets in the pump again by another 100mls.  We just need to figure out how to get him to stop puckering his lips on every bite so that he consumes the food on his spoon rather than shoveling it off the back of the spoon, thus taking three times as long to eat the two ounces he was eating two months ago.  Hopefully the change in his formula will make him more hungry and he'll be more eager to consume the volume.  He is eating one to two broken goldfish crackers per meal and asks for them by name.

Evan is still at the 10% for weight to height for his adjusted age and 5% for his actual age.  But since he didn't really gain any weight we're not making any changes to the volume of his formula, especially since it's only been a week since he had that virus.  He is eating more volume already but it's taken a week of persistence to get him back to consuming two ounces instead of the four ounces he was starting to hit.  He does not bite any crunchy foods but LOVES to suck a goldfish cracker to a soggy pulp.  Once it's that soggy though he throws it away and asks for a new one or refuses to eat the soggy one.  I do think that in another week or more we will see Evan eating more volume again and then once I see him doing this consistently I will go ahead and cut his formula back another 100mls again. 

The last thing we discussed at the end of our appointment was the GI's new goal for us.  To remove the feeding tubes from the boys stomachs permanently in six months.  (I can not type this sentence out without getting teary eyed and have that funny tickle in the back of my throat fighting back the tears.)  Do I think this is possible?  Maybe.  If the stars and planets align just right, if the moon could tilt it's axis just a little to the right, maybe.  If the boys keep trending the way they have been and no one gets as sick as they have been this month then we might stay on target to meet this goal.  Do I think it's likely?  No, definitely not.  Why am I getting teary eyed then?  Because it feels like I can almost taste it.  (Pun intended??)  We're so very far from that goal, there are so many steps to eating to master before they can really remove the tubes.  Evan needs to learn to bite into foods and chew them and swallow them.  Cameron will have an easier time of it for sure since he can bite food, but he needs to learn to take bigger bites and swallow bigger pieces and that's the hardest part to teach. 

I think that it will be at least another 9 months to a year and a half before the boys will consistently eat enough food and liquid by mouth to get the feeding tubes out.  This is my prediction.  And as all parents know, kids like to make us big fat liars.  I offer that challenge to my children and dare them to prove they can do it sooner than that.  I double dog, no wait, I quadruple dog dare Cameron and Evan to get their feeding tubes out in under 9 months!  And if they do that I'll give them anything they want.  Anything. 


Annie and Jason said...

I just got caught up.

I just want to say... I love you. I love your family.
I think you are amazing.
Those boys WILL be tube-free. If it's in 6 months or 18 months, it will happen. And it will happen because of how wonderful you are.
love you.