One Big Adventure
An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.

Wednesday, November 25, 2009

Pizza night!

Pizza night has been almost every Friday. This last week, we had pizza on Thursday. This time, almost all of the pizza ingredients were homemade. I made the mozzarella and ricotta earlier that day, the pesto, I made earlier this year and froze and I followed and adapted a pizza dough recipe, so everyone could eat it. And the most important part of all, this time I didn't burn the crust... I think I'm finally learning how NOT to burn the crust!

Tuesday, November 24, 2009

Building a doggy house, part 2

Finally the rest of the doggy house pictures. Owen decided the girls and James needed his experience and helped them finish building it!

Edited: I just checked the blog tonight (11/25) and realized that the pictures didn't show up. Hopefully this will work now! If it doesn't, please leave a comment to let us know.

Monday, November 23, 2009

Building a doggy house, part 1

I was trying to upload all the pictures from building the doggy house into one post, but Picasa isn't letting me upload more than three pictures at a time :(...

Friday, November 20, 2009

Doing a boy's thing

James is intrigued by the tree in the front yard... He tries to climb it whenever he can. These pictures are from the other day. He was taking a break from carrying bricks to build a doggy house with Becca and Carrie. The doggy house didn't stay long. The next day, James decided to sit in it and broke most of the walls down!

Thursday, November 12, 2009

Some good news

I just got off the phone with Dr. P.

He got James' biopsy results back and I think he was a little surprised, and encouraged. The rectal biopsy is totally normal. The other biopsies, from higher up in the colon, look "pretty good". The test for Hirschsprung's disease shows there isn't any. At all. This is really good news!

Dr. P said that he still can't promise me anything (and I wouldn't want him to), but he is more hopeful today than he was on Monday that the saline flush and flagyl should help clear things up.

Unless there are problems before then, I am supposed to call him in December to set up a repeat test in January.

I did ask about diet. He doesn't think that James eating lots of yogurt should affect his colon.

This is a big step up from Monday's initial news. Thanks for your prayers. We're still working on good nutritional things we can do for James.

Wednesday, November 11, 2009

The low-down on James

We're home and catching our breath after a whirlwind 6 days including two trips to Atlanta, one to Macon and beyond, and a chicken processing day--not necessarily in that order!

Monday was a very long day for James. We got to the hospital at 6 in the morning. It seemed really busy and we were late getting checked in to a room. Later, our nurse would tell me that they normally have 30-40 children come through Day Surgery but Monday, they had 57 scheduled children! Yikes! Considering all that, things went remarkably well from the logistics standpoint. We left the hospital just before 7 p.m. and James' surgeon, Dr. P was heading in for yet another surgery.

The first thing James had done was the fluroscopy. They use a clear liquid dye (I forget what it is called) and put it into James' colon by way of his mucous fistula. Then the radiologist took pictures of the dye travelling through the colon. This showed that James' colon was very small for his age. There was some concern about whether the colon had not grown for the last two and half years or perhaps if there might be something constricting the colon.

Thankfully, James was sedated for the procedure and afterward he fell soundly asleep. Now there was a great delay waiting for James' turn in surgery. One case before James' had new issues come up in surgery and their time nearly doubled (from 2 hours to 4 hours)... When it was nearly James' turn, Dr. P poked his head in to let me know that the scope he needed for James wasn't working, but they had the technicians on it and hoped to get it fixed soon.

Finally it was James' turn and since it was so late in the day, we were able to stay in James' room, rather than move again out to the waiting room. Dr. P came to see us when he was all done with James.

He is very concerned about the condition of James' colon. He said it is very inflamed, pussy, and full of bacteria overgrowth and mucous. It is difficult to tell if this is scar tissue and tissue damage from the colitis James had at the beginning of his chemo or if it is just from non-use for two and half years. Dr. P did say that while it did look like there might be some constricting running the length of the colon, there isn't anything wrapping around it, but that the inflammation in the colon is so severe that the constricting is not even worth considering at this point.

So the plan is this: Once we get the results of James' rectal biopsy to be sure that he has the necessary nerves cells, we will begin flushing his colon daily with saline (the same way they did in the hospital) and follow that with flagyll. The saline should help soothe the inflammation, flush the colon of mucous and other excess cells and hopefully begin the healing process. The flagyll is an antibiotic, which we hope with kill off the excess bacteria (which should then be flushed with the saline).

After two months, Dr. P wants to see James again and do the same tests (the fluroscopy in x-ray and the sigmoidoscopy in surgery) to see if there is any improvement...

My take on Dr. P is that he is currently not even cautiously optimistic. He is very concerned, but not ready to give up.

We are considering using some of the same things we would feed James, that would be nourishing to his colon, along with the saline flush. Please pray for wisdom about what to use and when, and that God would be glorified in healing James' colon and having it all put back together again.

Thanks for following our journey with James and for praying for us and him. While we are done with chemo, we still have a long road to travel with James.

Edited to add: Thoughts and suggestions on ways to help James are welcome! Especially natural ones!

Monday, November 9, 2009

James update: 2:50pm

James just went back to surgery. Dr. P came in earlier to let us know about another delay (the scope he wanted to use was down... but is now fixed). He is concerned about the fluoroscopy and the small intestines. But, he said he should be able to tell from the scope if it is a problem. If the muscles are constricting, it could be a problem, if it is just atrophy from lack of use, we should be okay. Glad God knows.


James update: 2:00pm

The nurse just came in and said.... It's time. She and Momma are talking about if we want some versed for James before going. Please pray that God will direct the surgeon during the scope and biopsy and the NP during the bone marrow aspirate and spinal tap. Also that James would fall asleep quickly and not panic. Will update more later.


James update: 12:50pm

Edited: Momma just heard from James' nurse. She guesses that it will be another hour before they come and get James unless something happens that we don't know about. Momma is going down to the car and get our breakfast and take a walk (I got mine earlier, when I went looking for a movie for James).

We're still waiting for James to be called back. Checking email and reading some news articles. PTL, James is still sleeping, on the gurney. He is so sweet and handsome (no, I'm not biased). We'll let you know if/when we hear anything.


This morning

Before bed snack

Popped amaranth, pears (that we canned this year), and coconut milk. So good!

James got new sippy cups at Target.
Helping get yogurt ready for Monday. We added coconut oil and bee pollen. James loves his 'bees and nuts' yogurt.
Talking to the folks at home. We're cleaning up our mess in the RMH kitchen (It's huge!!!)

James update: 11:30am

Fluoroscopy went well and James fell asleep during it. The radiologist said that James' colon was small, but that it was clear and there was no blockage. We are back in Day Surgery. James is still sleeping in my lap. There is one more patient ahead of James waiting to go to the OR... There was a long delay, one patient had some extra stuff happen in the OR, which is why we are waiting. Please pray that James stays asleep and that the rest of the day flows smoothly.

Thank you for praying...


James update: 10:15am

We're waiting in fluoroscopy with James watching Daniel Boone. He's gotten versed. Please, please pray that the versed will start working and James will fall asleep during the test.

We'll try to put little updates on the blog and Facebook throughout the day. Thanks so much for praying for us and James.


Guess where we ate

It was a delicious meal! After dinner, we went to Target to wear James out and then went back to the Ronald McDonald House.


Friday, November 6, 2009

Beef Tallow giveaway

You probably never thought when you came to our blog, to see a post about a beef tallow giveaway. I never thought that I would be writing a post about a giveaway like this. But I am. Here's the goods: There is a giveaway over at Kelly the Kitchen Kop's site for a 36lb bucket of beef tallow. Now that you think I'm crazy... this is what one would use beef tallow for... For frying french fries (everyone who trys it says that it is sooo good), instead of butter in your pie crust... AnnMarie says it makes the best crust ever.... And how about frying onion rings and chicken tenders in it. Another plus, it's good for you fat. So hurry over and enter. It ends at 11:59pm tonight.


Wednesday, November 4, 2009

Poor man's mushrooms

We joke around here about what the poor man substitutes for the more expensive things. I've used canned salmon to make Salmon Pesto Pasta (a delicious dish that Nona made for us a couple years ago). Nona uses salmon fillets and we do too, when we have them. But this particular evening, we didn't have a meal planned and Daddy was almost home. So, I cooked the pasta and dumped in salmon and pesto and served it. The only bad thing about it was that the salmon broke up into little pieces.
The other day, Katie was cooking and I taste-tested for her (we do it all the time around here). I was surprised because it tasted like mushrooms and I knew that we had used up the mushrooms in the fridge. Then Katie said that it was a eggplant tart with a potato crust. Now I guess the poor man has eggplant for his mushrooms!


Tuesday, November 3, 2009

That little red hairbrush

Daddy has a little red hairbrush that he's had  for as long as I remember. When Owen was a little boy, about 4 years old, he loved Daddy's hairbrush and would borrow it whenever he could. Finally Daddy and Momma got him a little red hairbrush of his own, so that Daddy could find his.The other day, James found Daddy's hairbrush and immediately attached himself to it. And then it disappeared. James hasn't been able to find it yet. I guess he hid it to keep us from finding it and taking it away and hid it too well. It seems that James might be getting old enough to get a little red hairbrush of his own. Maybe for his 5th birthday in December. My, how time does fly!


Monday, November 2, 2009

Minor change in plans

After talking with Vern and the folks at the clinic, we have decided to just go to Atlanta and have counts done there. We'll just pop in, get James' finger pricked and be on our merry way. Doing it this way, we can be sure that everything is looked at by the right folks and all the results are in the right place so those that need them (the surgeon, in particular) can get to them.

So, on Thursday, we will be taking field trip. Not sure yet what all of our stops will be, but hopefully it will be a nice day.

The nurse called today from the Day Surgery unit about James' tests and procedures on Monday. We have to be at Day Surgery at 6 in the morning.

So, we have two prayer requests:

1. That James' counts would be excellent and everything would look great (and be great).

2. That we can get a room at the Ronald McDonald house near the hospital for Sunday night. We won't know for sure until Saturday morning if they will have a spot for us.



Happy Birthday Momma!!!
and many more!