Paige and I had a nice visit with Lissa today! She brought us all kinds of goodies courtesy of some JMS folks. Its a good thing too! Mike and I lived on nutty bars and coke for a week in the hospital (scratch that...Chipotle and subway did get delivered by Mike's family...and we ate an ordered pizza in silence one night after Paige was asleep....the point is, eating well balanced meals was a LOW priority for 5 or 6 days last week). We had eaten what was here over the last 5 or 6 days but our rations were running pretty thin. Mike had some I-don't-see-any-mold-so-it-must-still-be-okay leftover hotdish for lunch, and I had crackers & hummus. Big grocery trips are out of the question until we have a better idea of what 2 ER visits, ambulance ride and 5 day hospital stay are going to cost us. Paige looked everything over and was satisfied and we feel a lot better having one more thing taken off our plate....er...put on our plate....you know what we mean. :)

After our check-up with Dr. Sudel, we went to visit G&G Blake (AKA "Mamas & Papas"). We played and visited and took some cute pictures of Paige in the gardens.

Paige 'magically' turning the solar lights on...by covering the sensor with her hand...oooOOOooo!

Paige in Papa's corn field

Paige by the new apple tree.




Standing in the "big" garden


Smelling day lilies


More smelling....



Getting a substantial amount of pollen wiped off her face.

I don't have any pictures from our trip to the clinic today. It was overall pretty good news, so that will have to suffice.

• Her weight gain was poor the last 3 weeks...duh...we figured it would be due to her hospital stay.
• Biopsy was totally normal.
• Dr. was pleased that Paige's during-the-day appetite has stayed strong/increased since being sent home from the hospital.

As far as a diagnosis...that's complicated. At this point, it is obvious that Paige needs more calories than she can physically eat in a day in order to grow. Sounds weird right? The Doctor and the nutritionist that we see at the U said its a pretty common occurrence in their clinic. Children who have fallen way off of their "curve" on the growth chart who are otherwise healthy. Paige has fallen off of her curve...and her curve was below the 5th percentile to start with...and has been off that curve (and frankly, off the growth chart) for over 6 months....She is otherwise healthy, dare I say chubby in...ahem...certain thighs areas cheeks. Paige needs her nutrition to be supplemented with the tube feeds for at least the next couple of months so that her body AND mind get what they need to grow.

The plan then is to continue to monitor her and continue with the tube feeds. According to the specialists we saw today, many kids are "pushed" back onto an appropriate curve with the tube feeds, taken off the feeds, and then sort of re-settle on to a curve that is acceptable....meaning it is actually on the growth chart and it actually curves.

For those of you who have commented about how I was small, when I was Paige's age, that did come up today. We talked about how some kids are genetically predisposed to be...well...little. The doctor may push those kids (safely) to the 20th percentile and then stop the feeds. If that kid settles on the 5th percentile curve after feeds are stopped, so be it. If the kid is on the chart and consistently growing, the doctor doesn't care if its the 5th percentile or the 95th percentile.

The goal for Paige over the next 3 to 6 months is to beef her up to the 25th percentile. This is a pretty lofty goal if you ask me....she has NEVER been at the 25th percentile....I'm not even sure she's been at the 15th....anyway

the 25th percentile was chosen because that is about where her height is....although that curve is flattening out as well....

The question of why a kid would need more calories than they can physically eat in a day was discussed too. Some of the things that explained it for Paigey were:

• Her milk allergy could still be a factor. There are some pretty high calorie foods that she is unable to eat (butter, cheese, etc)
• Metabolism could be a big factor for her. She has been politely described as "lively" on a few occasions. Mike and I joke about how we never see her walking because she is running, climbing, or rolling to her destination.
• Dr. Sudel and Annie the nutritionist acknowledged that they deal with this often for kids who have spent a lot of time hanging out on the bottom of the growth chart...not that that explains why...but it does give us some peace of mind.

As frustrating as it is to not have a clear diagnosis, we do have a clear plan, and a plan that has worked for lots of other kiddos. To be honest, there is a long list of "things" that could cause a toddler to stop growing and we are HAPPY to report that she has been tested for a zillon of them and has none....that's a really really good thing. :)