Merry Christmas!

Gastric Emptying

Wednesday we headed to Birmingham for Abby's test.  She tolerated the 4 oz formula bolus as best she could, although she did gag and retch several times.  We sat with her for an hour while she was lying under a machine taking pictures of her gut while it processed the formula.

(watching/listening to Dora)

(cute sea mural to look at while in the machine)

There was some confusion during the test about what we were seeing; however they sent us on our way after the hour was finished.  Abby was pretty upset the rest of the day.  While we waited at the Dr.'s office to be seen she was very vocal and obviously upset.  The bigger she gets the more unsettling and awkward this can be... especially in a crowded but cramped waiting room.  She did finally calm down after we gave her Carafate.

The doctor told us the findings from the test were perplexing.  The purpose of this test is to fill her stomach with formula and watch it empty into the intestines while measuring how long it takes.  For some reason Abby's stomach did not hold any of the formula, instead it went straight into her intestines.  After double and triple checking that they used the correct port (G not J), he concluded that her G-tube must not be in a proper position.  He thinks it must be too low near the stomach's exit valve (pylorus), so that anything put into this port directly irritates the valve, possibly causing some of her gagging, retching and general discomfort.

(stressed Abby, pulling her hair)

The more we learn about the GI system and it's complex workings, the more concerned we are as to how we might help Abby.

So, going back to the test... the doc thinks her tube might need to be moved.  It's possible that her G-tube has changed position with her growth.  It was placed when she was 9 months old and about 12 lbs.  Now she's 7 and weighs over 35 lbs.  I never imagined this could be a problem!

The plan now is to wait for him to discuss the test results with the radiologist on Monday,  and he will call us Tuesday evening to talk more about it.  One option might be to remove her current G-tube and place an NG (nasal gastric) tube for a few weeks while we wait for her stoma to heal.  The other is to schedule the surgery and just remove the old and place the new at the same time.  There is also evidence that formula coming from the J-tube is backing up into the stomach.

Needless to say we are a bit confused about the outcome of Wednesday's test but also very thankful for the truth.  That is exactly how we had prayed... that the truth would be revealed through the test and a good solution would be found.  Although it's not what we expected to find we are glad to know this problems exists.  Reflux is still a big part of the equation although it's unclear at this point what needs to be done about it.

We are anxiously patiently waiting for Tuesday's call.

Meanwhile we have stopped the higher calorie formula due to diarrhea problems.  She just isn't tolerating the stuff and isn't able to absorb the nutrients in it.  So for now we are back to the 275 cal/can of Peptamin Jr with fiber.  It's been difficult to get the full 3 cans/day in her.  Lately we've been waiting for her to fall asleep before we give her nightly meds and then increase the rate on her feeding pump also.  She is able to sleep soundly with the Carafate on board and tolerates her feeds much better when she is sleeping.

I got a quick shot while she was being casted for new AFO's (ankle, foot orthosis).  Her feet are growing!

17 months

Precious Levi is growing and changing faster than I can record his cuteness!

He is talking more and has really picked up in his signing too.  He says: Momma, 'Siah, Abby, Dada, apple (apo), stuck, banana (nana), more (mo), door (doe), Papa, no, diaper (di), baby, grapes (gay).

He signs most of the above and also "all done,""up," "hurt," "sick," "bird," "sing" and a few others.  I love hearing his little voice and watch his hands tell me what he wants.

Grapes are his favorite thing in the world!  He asks for grapes every day and cries if we don't have any.  He still likes to throw things. Anything and everything.  Bathrooms have a particularly strong draw for some reason, where he loves to pull all the toilet paper off the rolls and explore the toilet.  *cringe*  Today I found him about to throw a CD in!!   We try to keep the door closed but any opportunity to enter is taken.

He's quite the climber too.  He climbs on the kitchen table, the counters, the train table, the piano, any and all chairs, a stool.  I'm surprised he hasn't attempted our Christmas tree!  He does however love to rip off the low hanging ornaments and chuck them across the room.  Why did we get a tree this year?

It's been fun to watch the boys play together.  Levi has developed a high tolerance for tackling, although there are a few tears shed every day.  Someday he will have his turn to be the tackler!

He weighs about 22 lbs.  Just right for a good squeeze!