A major setback :(

Pumpkin and I went to Anchorage today for her check up with her GI doc.  It was perfect timing because she has been going downhill fast.

At the end of July Pumpkin contracted strep throat again.  Just as she was finishing her amoxicillin for that she had a bad sinus infection so she took another 10 days of an antibiotic called Omnicef.  By the time these 3 weeks were over, we were hoping that she'd bounce back, but she didn't.  She did get over her throat and sinus infections, but she didn't get her appetite back which went away with the illness and antibiotics.  Over the course she lost 7.4 of her 20 lbs she had gained in the previous 6 months :(.  She had been up to 90 lbs, but now is back to 82.6 :(.

This morning frightened me a little.  We got her up early because it takes 3.5-4 hours to get to Anchorage from here and had to get a start by 6 am.  As we were gathering our supplies for the road, Pumpkin tripped on her pillow and then had a seizure (not sure which happened first).  This really got my attention, because she had not had a seizure for over a year.  When her nutrition is good, she doesn't do this...

Anyway, her GI doc thinks the recent illnesses flared up her Crohn's and wants her back on either enteral nutrition or prednisone.  Pumpkin doesn't do well with enteral nutrition - she won't go out of the house with an NG tube in.  She is too self-conscious.  She also is not wanting the MICkey button, but this may have to be in the works if the prednisone doesn't turn things around.

We start tomorrow on the pred and call the GI doc next Thurs or Friday.

July update

Pumpkin is pictured here with her teammate and friend.  She is on the right.  She had a great time at camp and had a really good soccer season.  She was quite weak at first, but after a few weeks she was able to play the whole game without coming out to rest.  She is still drinking the same amount and same kind of formula, but is doing so well her pediatrician is starting to talk about reducing the amounts.  She is up almost 20 lbs now and has grown 3 inches!

June Update

I am looking back and seeing that it has been two months since my last update.  Pumpkin is doing awesome.  She no longer has the NG tube.  She is drinking a mixture of Ensure Plus 50/50 with Peptamen Junior - about 1800 calories a day and eating regular food.  She has gained 16+ pounds since January!  She is actually up to the bottom of the growth chart and is not looking like she just came out of a concentration camp!  In April or May she started 6MP and for the first time she has had a normal fecal calprotectin level.

This summer Pumpkin has been spreading her wings and getting outside of her comfort zone.  She had swimming lessons in May and passed to level 4.  Hopefully she'll do more swimming after camp.  She went to drama camp and in spite of her original reservations she took on a pretty big part in a play and did very well with it.  She is playing soccer with the Boys and Girls Club.  She is also in the process of getting braces on. 

Right now she is at Camp Oasis, where she had to fly to Seattle with a chaperone for a week.  It has been stretching for Tim and I to let her go away so far and to not have contact with her for a week.  I think it might be harder on us than it is on her!  I heard a good report today that she is doing well and having fun.

Random pics of Pumpkin with her NG tube

In the safety of her own home, no holds barred!
 

Pumpkin gets her haircut short.  She looks super cute, but this creates a problem for a tall, thin, young lady with Crohns:  other kids mistake her for a boy...  She overheard one girl say to another at a store that she thought "the boy over there (refering to her) was cute..."  Pumpkin told me she thought, "THEY BETTER NOT BE TALKING ABOUT ME!"

 

Notice the great artwork in this pic and the first one!  All her originals.  She made the earrings too.

The beginning of Pumpkin's Ensure can castle

It even has a draw bridge with a working pulley system!

Up 5 pounds in two weeks!

Pumpkin is doing better than ever!  She's drinking the 2150 calories daily, along with some food each day.  She doesn't have much appetite for anything else, but she's gained 3 lbs a week ago, then 2 lbs this week.  In one week she grew .75 inches as well.  This put her up to the 50% for height and she is now actually on the growth chart for weight (still about 2% :) ).  At the doctor's office, she did not have any abdominal pain, which is the first time that I can ever remember.  Her gas has improved, too, since we took Peptide out the the drinks.  Currently she is drinking 4 cans Ensure Plus mixed with 3 cans Peptamen Junior.  She can't drink either of the formulas plain, but mixed together seems to do the trick!

Pumpkin loves to have fun!  Here she is dressing like a ninja!

My panda-angel maker!

NG tube pulled

Friday night Pumpkin pulled her NG tube (nasty process).  She is now tubeless and doing well!  8 cans she'll have to drink to keep up, but she's done it two days now.

Friday we started some table foods - liquids anyway.  She had a glass of apple juice - probably not the smartest.  It gave her diarrhea (just a little) and made her already foul gas worse, but it wasn't a long-time problem.

Saturday she got some beef broth made from organic beef bouillon.  This was her first warm, salty food in over 2 months.  She said it tasted like "liquid steak" and she rated it "hugely good" or something like that.  No side effects!  Double thumbs up!

I think today we may move to strained vegetables or potatoes.  We'll steer clear of the fruits, lactose or gluten yet.

Foul gas is our problem right now.  Not sure if it is from the Peptide or from the Peptamen with Prebio.  We'll eliminate the Peptide first and see how it goes.  The stinky gas started before the Ensure or other foods.  We'll also consider probiotics, perhaps water kefir, after that if necessary.

Great start to oral formulas

Right now Pumpkin is doing well drinking 1/2 Ensure, 1/2 Peptomen shakes.  She is drinking 4 a day.  We are cancelling the surgery for now and hopefully she will be able to get up to drinking 8 shakes a day and we can remove the NG tube and start oral feeding!

The girls and I needed a change, so we went to a movie Saturday night.