Resting

James is resting by himself in the bed while Hannah and I set about accomplishing other things. He has vomitted a few times this morning and we're not sure why. We are waiting for another consult with th GI docs to see if they have any ideas. I sure hope it's not an intestinal bug... but then maybe that would be better than something else.

Sunday night it was looking 'impressive' and it leaked a good bit. So his nurse, who has some GI experience, requested that some more knowledgeable people take a look at James. Yesterday afternoon, a group of folks that had seen his big sore in the early stages came by to peek again. The consensus was that the pressure ulcer is improving. That is good news.

So at this point, we are mostly in waiting mode. Waiting the pressure ulcer to finish healing, waiting to finish his cycle of antibiotics, waiting to see if there is a reason for his vomiting and hoping in the meantime that it resolves itself.

Please pray for wisdom to help James, for his comfort and for complete healing from all that is troubling his little body now...

Love, Stephanie

Slow going

Today when we (and I use that term loosely) changed out the dressing around James' g-tube there wasn't much improvement from yesterday. The site actually has a larger area of redness than it did a day ago, although there didn't appear to be any more pus.

The results from the culture indicate that klebsiella is the bacteria culprit. If it gets into his blood stream, it could be dangerous, but they have, thankfully, been treating him with the right antibiotic, fortaz, all along the way.

We were hoping to start him back on tube feedings today, but after seeing the site, we were all (me, the doctors and the nurse) uncomfortable with putting anything in through the g-tube. The current plan is to wait until tomorrow so the GI doctors can look at it and tell us what they think ought to be done. Hopefully the wound/ostomy nurse will weigh in as well.

I have been concerned about James' fluid intake and we seem to have gotten a handle on that and now our focus is more onto his nutritional needs with the idea being that his body needs protein to be able to heal. I thought it was also interesting that the nutritionist wrote the order for his TPN (Total Parenteral Nutrition--essentially IV feeds) to include extra zinc because it is known that zinc helps with the healing process.

James' counts are really good and if this wound around his g-tube site wasn't an issue he would get his next chemo this Thursday. That means this was supposed to be our week off! However, Dr. Keller wants to wait and see how James heals before he decides if we will postpone the next chemo treatment.

James still seems pretty weak. This is due to temporary nerve damage caused by vincristine (a chemo drug). As the nerves regenerate, he should be able to increase his activity and regain his muscle strength.

Please pray for wisdom and timing, and thank the Lord with us for the wisdom he gave the doctors to put James on the fortaz in the first place, especially since they didn't initially suspect klebsiella. Pray, also, for his complete recovery from the vincristine side effects.

Thanks for checking up on us. We sure appreciate your notes and prayers on ours and James' behalf.

Love, Stephanie

Surprises

I am not a big fan of surprises. I admit that part of that stems from a perceived need on my part to have control. But most of the time, in my experience, surprises aren't really surprises. There is a lot of undercover whispering and suspicious behavior and, for me, that takes away from anything pleasant about the surprise.

On the very few occasions, someone has actually truly surprised me, I did enjoy the surprise.

Friday, Vern had a number of things he needed to accomplish while everyone else finished up chores and Katie packed up the things that Vern was going to bring up to us at the hospital. I got a call from him to let us know that he was on his way and we were looking forward to his arrival.

Here at the hospital, James' ostomy bag was coming loose and Hannah was starting the process of changing it. She called home to get Katie to find out what tips Katie could share to help the bag stay on longer.

The phone rang, but there was no answer so Hannah left a message. About five minutes later, when there had been no call back, Hannah tried again, with the same result (except that the second message sounded a little more desperate!).

In the meantime, we discovered a questionable spot under James' ostomy bag wafer and we were covering it with gauze to wait for the appropriate specialist to come look at it (it didn't end up being anything of concern). Since our wireless connection wasn't very good in that room, Hannah went down to the playroom on the floor to use the computer there and James and I snuggled on the bed watching one of our favorite Signing Time DVDs.

There was a hearty-than-normal knock at the door, but the door didn't open as it usually would have, so I called, "Come in." The door flew open at once to reveal a brief view of five smiling Skelly's. It was brief because they all surrounded the bed with hugs, kisses and snuggles. I was wonderfully surprised and I think James was too.

Thanks to Vern, Katie, Owen, Becca and Carrie for the REAL and very pleasant surprise!

Love, Stephanie

The guys

James gets the arm positioning from his Daddy!

Thumbelinas

The other day the little girls came in to my room with their hair all fixed up. Hannah had done them up in thumbelinas. It is fun when they like to match.

So cute!

The kittens are really growing and getting around. They actually look very different to us and their personalities are pretty opposite.

One kitty is either lazier or weaker; the other much more active. One is much more 'vocal'; the other is quiet. One has straight, pointed ears, like it's mama; the other has cute little crimped ears. One is confident and trusting; the other is sheepish and a little nervous (especially about being held). Both are great fun to watch.

Hannah did a little research online about caring for kittens. One of the things she read was information on s*xing kittens. We tried, but we still haven't figured it out. Since Mama Kitty is such a great mouser, we are thinking about keeping the kittens to have a trio of mousers. But if anyone is interested in a kitty, let us know.

In the meantime, we'll have to be thinking about names. We have some thoughts, do you?

Love, Stephanie

Homeschooler Quiz

Hannah found this quiz. It isn't exactly where we are, but I would say it's the goal.

What Type of Homeschooler Are You?

Swiss Family Robinson If you can grow it, pick it, preserve it, or butcher it, you own it. Otherwise, you do without. Youd prefer to live off-grid from the power company, since youre nearly self-sufficient already. You enjoy unit studies for the way they utilize all facets of life and truly incorporate life and education as a whole, not as separate entities. Visit my blog: http://www.GuiltFreeHomeschooling.blogspot.com
Take this quiz!








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If you take the quiz, please let us know how you came out!

A decent night's sleep

Last night was a pretty good night, for being in the hospital. Everyone was very understanding about our exhaustion level and we slept, with lots of interruptions, until about 10:00 this morning. I am starting to feel normal. Hannah slept really well on the extra bed in the room, so that is good for me and for her!


I mentioned the concern about Hannah staying tonight to James' oncologist during rounds and not too long after, Jenn, one of our favorite nurses from the oncology floor came up and spoke to the charge nurse about what an integral part of James' care team she and Katie are. It looks like that won't be a problem in the future, PTL!


The wound ostomy nurse came to take a look at James' g-tube site and tell us the best course of treatment. She thought that the interim plan the night nurse came up with was the perfect solution. She also thought that the ulcer looked pretty bad. Hannah did say it had improved since last night. Since we are on the med/surg floor that handles GI stuff too, we are meeting a new group of nurses who actually have a lot of GI experience. This is good for us! We will probably move down to the oncology floor tomorrow, but it would be okay to stay here.


I forgot to mention that we have also been busy with our chickens. We processed them Tuesday. Processed is a euphemism for slaughter, dress (scald, pluck, eviscerate--by hand), and shrink wrap. We had some great extra help and processed nearly a hundred birds in just under six hours. Thanks Philip, Billie and Sarah!


Our other new addition to the processing team this year is a Featherman Scalder that we purchased from Schafer Farms. I am usually the one running the scalder, so I saw the most immediate benefit. I hope to write up a nice 'review' of the Featherman soon. It significantly improved my efficiency!


On Wednesday, we celebrated Carrie's 4th birthday. She actually turned 4 on March 30th, but I was still in the hospital with James in Minnesota and she had just been in Georgia for about five days. We didn't do all the usual birthday things, but she did get to pick her dinner meal (waffles, strawberries, whipped cream and fried eggs, with apple juice) and we sang our Happy Birthday songs many times. I think the singing is what she missed the most!

Thanks for checking up on us. Please pray that we can control James' pain well (and that it would subside soon) and that the wireless connection will remain good so I can post some photos!

Never a dull moment

The last couple of weeks have been filled to the brim.

James has had additional chemo and some additional side effects (nothing like he had during induction, thankfully!). We all kept hoping that he would make the turn upward before he had to go into the hospital. Especially since we (Dr. Keller, Vern and me) to skip his third dose of vincristine this time around.



As I understand it, the vincristine attacks the leukemia cells as they divide. Specifically it attacks a 'string-like thing', whose technical name escapes me, and stops the division and growth process. It so happens that nerve cells have the same string-like thing and so the vincristine also attacks all the nerve cells. So, while it looks like a person on vincristine is loosing muscle tone, they are actually losing nerve control. This seems to affect James the most in his already compromised intestinal tract.



The nerves aren't moving his stomache muscles to empty it's contents and eventually (it doesn't take long) the contents leak out around his g-tube. Then his g-tube site gets irritated. Because he is on steroids, it doesn't heal, it gets worse. And so James has a nasty pressure ulcer around his g-tube site. It seems it came on all of a sudden and it is infected.

Last night, we took him to the emergency center and through a sleepless series of events we are now at Egleston's and James has been admitted. He is getting an antibiotic and IV fluids. Hannah is with me. We aren't on the chemo floor, so we'll have to appeal tomorrow either to move, or for her to stay inspite of her young age. That would be a great thing to pray about!

Please also pray for wisdom for the doctors and that I would be able to effectively communicate my concerns. Pray for quick and complete healing. At this point, it looks like we could be here for a full week.

In other news: The Lord orchestrated the ground-breaking for our new home that we weren't expecting to happen until the middle to end of August. We are grateful for some very generous friends and brothers and sisters in Christ who are greatly easing our load. We appreciate all your prayers for the safety of all working on our house and for all the decisions that need to be made in the process.

Thanks for stopping by. Please comment or e-mail if you can. It means a great deal to know you visited.

Love, Stephanie

The best laid plans

I had high hopes of posting lots of photos today--taking advantage of the high speed connection we usually have here at the hospital/clinic. Unfortunately, our signal was weak and we kept getting disconnected in the middle of an upload. I was only able to upload one photo.

However, our visit here today has been helpful and James is doing well. He got more vincristine, more daunarubycin (sp?) and we are just finishing up the TPA infusion that is supposed to take care of his clotting issues.

I have so many things I'd like to write about and post pictures of. I will see what I can do from home to make it work a little easier.

Please continue to pray for us and for James:

1. Thanking God for his protecting James from infection and asking Him to continue that protection.

2. For continued protection for James from side effects of this chemo and for safe travels as we drive back and forth to Children's almost every week.

3. For wisdom, perfect timing and the Lord's provision in building our home.

4. That the Lord would be glorified in all we do.

Thanks for stopping by and checking on us. As always, we enjoy hearing from you.

Love, Stephanie

Eight little fishies

Back in January when we came to Georgia for a wedding, we stopped in Kentucky for a stretch break. While there, we walked by a mini-van with a school of six fish emblems on its rear door. It immediately inspired all of us and we thought it would be a great thing to copy. We've been picking up our fish and waiting for warm weather and then the time to implement the plan.

We finally got it done yesterday:

Getting better all the time

James is mostly back to about where he was in February before he got his ALL diagnosis and got whacked with all the chemo. He is pretty active now which is great to see. The only down side with all his new activity is that it has become very difficult to keep his osotomy bag attached, but in the grand scheme of things, it is certainly something we can work with.



Today Katie and I brought James up to the clinic to begin his third phase of chemotherapy. As well as he as been doing, it was a little hard. We had been having some more issues with his central line (like no blood return from either lumen), but a visit to radiology to check placement seemed to fix that. We think it was the fit he pitched when I laid him down on the x-ray table. Anyway, both lumens finally gave a good blood return, the placement of the line looked fine and so he got his chemo.



He had a spinal tap, which was totally uneventful (PTL). And once he was ready took the vincristine and daunorubycin (sp?) readily through his lines. Aside from nausea, we probably won't see any side effects right away. If he has any, they wouldn't show up for a week or two or three. Vincristine is the chemo drug that we believe caused all his intestinal problems for the first two months of this adventure. He is only getting a half dose, so hopefully it won't cause any problems. It would probably be good to pray for no side effects from the chemo.

He will be back on steroids at home for 21 days. Next Thursday we will return to the clinic for more chemo and for an infusion of TPA which will, hopefully, break up the clot that is trying to form in his line.

As I finally get this finished up, it's actually Saturday morning (we were in Atlanta Thursday and Friday, staying at the Ronald McDonald house Thursday night) and James is doing very well, PTL.

Thanks for checking in on us.

Love, Stephanie

As a matter of fact, we had a wonderful time

We thoroughly enjoyed our time away last weekend. We slept. We ate--some pretty good food, too. We talked and we were quiet and no one interrupted the quiet. We read aloud to one another. We 'dreamed' about the future and all we have coming up in the next few months. We set a few goals and did some prioritizing. We walked around downtown Milledgeville. We visited Lowe's and sat down with a kitchen planner to get some ideas for our new kitchen.

Most importantly, we just really enjoyed being together and then we were very happy to get back to all our snuggly children and have them glad to have us home.

Love, Stephanie

for Mary McC.--I keep trying to e-mail you and it keeps bouncing back. Let me know how Burt's interviews went (we were praying). Sounds like exciting times with your family!