Battle at the OK potty

That's what Vern called it last night when I had to 'do some battle' with James. He has started taking a great interest in playing in the potty water and last night he was arming up with toilet paper. I suspect he was gearing up to fill the potty and get plenty wet when Carrie called out for help. I told him to 'hand it over' and Daddy narrated from there. Honestly, I had to turn around a few times, so James couldn't see me giggle or see my eyes sparkle. I was glad to skip the messy part, hopefully we're breaking him of his habit.

Today we went to Macon for lab work. I was driving when the nurse called with the results, so the only number I'm sure I remember is his hemoglobin which was 10.8. Not great for a normal, healthy little person, but wonderful for one on chemo. So his reward is more chemo at home tonight. Except for two runs to Atlanta and one to Macon, we have been home since November 20th. That's a whole month!!! Lord willing, we won't have to return to Atlanta until January 3rd for a clinic visit and lab work.

I still find myself walking around in a fog on occasion. Katie is my right arm when it comes to running the house and Hannah is my right arm in taking care of James. I really don't know how I'd do it without them both. I feel pretty divided between settling in to our new house (which still love), 'doing' Christmas, accomplishing normal daily activities (like school and laundry) and managing James care which really is an art.

Below is James in one of his favorite modes of transportation--the bear crawl.

Thanks for stopping by. Love, Stephanie

This weekend's excitement

Yesterday it rained. It was wonderful. I felt like Sarah, Plain and Tall when it rained in Maine after there had been such a terrible drought on their farm. I thought about the romance of stepping off the porch and turning slowly in the rain, drinking it in. However, it was quite a heavy rain and the temperature was around 60 degrees and it wasn't long before the reality of being soaking wet in the relative cold and wind took over my thoughts and I just admired the glorious falling water through from the dry porch.

It wasn't long before the power went out. This, of course, made me very grateful for the thought of being cold and wet and how it deterred me from doing something I would have regretted. Gratefully, we chose a gas cooktop and lunch preparationg was unhindered. Our work on closet shelving was cut short and then we were a little concerned about water. We still don't have back up water here for drinking, washing or flushing potties.

It was about three hours before power was restored (a dead tree had fallen on a line) and that was just the same time we were able to power up a neighbor's generator to see about getting the water running into the tub--just in case.

Later in the evening, there was a flurry of activity as someone discovered water dripping from a light fixture in our big common closet, between the bedrooms. Vern and Owen crawled out into the attic space to discover water running in around a plumbing vent. They employed a clever version of the normal leaky roof stop gap and checked it often until the downpour subsided.

This morning we learned, from neighbors who have a rain gauge, that we had four inches of rain over yesterday and last night. Praise the Lord. Today was crisp and clear. Not cold by Minnesota standards, certainly, but a welcome relief from the summer heat that came our way earlier this week.

After church and lunch, Vern and Owen set out to climb Mt. Skellyrest to repair the leaky roof. I got to provide ground support and everyone else got to watch. Katie photographically recorded the event for posterity. I'll try to put the pictures in another post--this one isn't working.

We remaining very grateful for the Lord's provision and protection in our lives.

Love, Stephanie for all

Alive and well

Just a quick post here to let you know that we are indeed alive and well. We've done a few more stints in the hospital since I last wrote and we moved in to our new home November 3rd. Which we could not have done without the Lord providing so many many folks to bless us--the C's--whose home we invaded for SEVEN months--thanks PJB&L (they even said they've missed us! what great friends!), Joey&co who sold us our land for a great price and through in framing our house to boot...never mind all the land clearing, tree pushing, subcontractor coordinating and coaching, David&co who got our foundation in a month ahead of schedule as a gift, John&crew who put on our roof for the cost of materials, Bruce who has tirelessly handled so many of the fine details to make things work and continues to do so even without the motivation to get his room back! WE are blessed beyond words to have so many great folks in our lives...

We did get to enjoy Thanksgiving in our new home although we had hoped to spend that week with Mom Skelly, who celebrated 90 years Thanksgiving day. We weren't able to make it due to an unplanned hospital stay, but we know God has a plan in it all and we are grateful to Him for His protective hand in our lives.

Now it is December (wherever did the year go?) and we are continuing to settle in and prepare for the holidays. We aren't missing the snow yet, but then there wasn't a lot of snow the last few winters.

The hospital changed it's rules on blog access and I can no longer post from there. I am trying to get a photo album up on Picasa, but it keeps telling me I need an internet connection to upload. Doesn't dial up count? :*)...

Wishing you a wonderfully blessed holiday season... and hoping to be able to post some in the meantime. Thanks for checking up on us...I'm working on catching up with e-mails too... it's all a slow process and I appreciate your patience!

Love, Stephanie

Home and running

We arrived home last night pretty near 8 p.m. There were a few delays getting out of the hospital, none of which could really be helped in the end. We went straight home--we did not pass 'go' or get gas or food. Despite leaving at the height of rush hour, we had a pretty clear drive home.

It took a while to get everything settled once we arrived, but there was a delicious homemade meal waiting for us and we were all finally in bed by midnight.

This morning, the plumber is working at the house, installing the plumbing fixtures (sinks and toilets). The power company was there too, waiting for the much-needed rain to let up so they can trench in our power line and connect it to the house. The HVAC man is supposed to come this afternoon to finish up his stuff. Things are moving along and we are still trying hard to make a Nov 2 or 3 move in date. Thanks for praying for us.

James is doing very well, by the way. He needs to stay awake more today so that he can sleep more tonight!!

Thanks for stopping by!

Love, Stephanie

The stars of the sky

It is a wonderful thing to live in the country. It is delightful to see children grow up in a rural setting. There are so many wonderful lessons here... for them and for me too.

The other night, we had arrived home from working on our land, preparing our new home to live in. We had unloaded the children from the van and everything and everyone was inside, except Owen. I looked out to seem him staring at the sky, studying the heavens. He was motionless, which usually only happens when he is sleeping.

I walked out to where he was, put my arm around his shoulder and squeezed him with a hug. He responded by putting his arm around my waist and hugging me back. But he still stared up at the sky. I looked up with him, waiting. Grateful for an 11-year-old son who is loving and affectionate--not embarrassed to be hugged by nor to hug his Momma.

Then he spoke. "Momma. It's really neat to look at the stars out here. The more I look and try to count them, the more I see to count."

So I looked with him for a time, peering in to a very small part of the heavens, counting stars. Before I could count them all, more appeared behind them... and behind them. In a very short time, there were far too many stars to count. Soon after that, there were too many to see individually as they just kept appearing in clusters.

As we turned to walk to the house, we talked of Abram and how he had tried to count the stars. We wondered if, perhaps, we had counted some of the same stars he counted.

"Then He brought him outside and said, 'Look now toward heaven, and count
the stars if you are able to number them.' And He said to him, "So shall
your descendants be." And he believed the Lord, and He accounted it to him
for righteousness." Genesis 15:5,6

Home early, we hope

Please forgive my many typos in the last posts. I have been in a hurry to get off the computer and get back to James and I'm not doing the best job of proofreading.

Yesterday was a great day. We had a long time with the family and Vern and I were able to just sit and talk about things we haven't been able to talk about for some time. I was glad to get some snuggle time with Becca, too, who has really been needing her Momma to be a little more available--we have been talking on the phone a lot and I am glad to be able to do that. I always like to be able to hug the children and tussle their hair. It's so nice to say and hear "I love you" in person. I pray I never take that for granted.

Today our favorite Nurse Practitioner on the floor, Colleen, came in and said, "I'm going to find out what we need to do to get you guys home." Hooray! The goal is to get us out of here tomorrow although we might not make it till Wednesday. (Tuesday would be a good thing to pray for!) James' counts are good, none of his cultures grew back any kind of bacteria and he is more and more like a two-year-old in captivity here! He still cannot eat anything by mouth and won't be able to until everything heals up really well. He is usually fine with this as long as we are sensitive not to eat in front of him. For nutrition, he would go home on TPN (IV feeds).

Dr. Tenjarla said that the healing of James' g-tube site was 'miraculous'. Please pray that healing continues. James was due to have chemo today, but that will be postponed. Pray for wisdom on the timing of starting that back up. Of course, all the delays will mean that his treatment lasts longer, but that is okay.

On the house front, things are moving along. It was a productive weekend and we should actually have power connected to the house today or tomorrow--that will be a big milestone! The plumber is planning to come Wednesday to install all the fixtures (except for the kitchen sink). We are hoping the kitchen counter will arrive Wednesday to be installed Wednesday or Thursday.

Thanks for your prayers and thoughts. I am hoping to get over to the library this afternoon. That is my 'last chance' for uploading photos to the blog. It would be okay to pray about that too! :*).

Love, Stephanie

Busy hospital day

James' g-tube site showed significant improvement today. Even this morning it looked much better than it did when we went to bed last night. He is quite his perky little self!

Our biggest challenge is splitting up to have an opportunity to eat since he isn't supposed to have anything by mouth. We are getting that figured out.

This morning we went to the AFLAC Bingo in one of the conference rooms. James won a slinky, the book, _Green Eggs and Ham_, and a Nerf football. He was much more interested in the football than the last round of Bingo, so we decided to head up to the library to check out the camera. Our hope was to get some more pictures (the garden in beautiful and the weather today was the just incredible!) and then go back up and get help posting them onto the blog here.

On our way to the garden, we met some new friends, Adam and Allison and their two-year-old daughter, Lacey (I hope I'm spelling these right). Lacey is a beautiful little girl with Down syndrome. She has heart issues and feeding issues and is very petite. It was fun to watch James and Lacy interact.

We got some time in the garden and then had to run back upstairs when one of James' IV lines disconnected. It was easy to fix and then we were on our way. By the time we made it back to the library, the computers were all in use and James was in desperate need of a nap.

I have been trying other computers to see if I can post some pictures on the blog, all to no avail. I will not give up! ;*)...

We are very much looking forward to the family's visit tomorrow. We heard they accomplished quite a bit at the house today, PTL!

Hope you have a restful, worshipful Lord's day! Thanks for stopping by.

Love, Stephanie

Two Weeks !?!

James' GI doctor, Dr. Tenjarla, came by yesterday to see him and take a look at the site. She thought that because the it had aroded enough for the tube to fall out, that we should probably plan to be in the hospital for at least two weeks. My first thought, of course, was, "Two weeks! Oh no!!" My second thought was, "Well, Lord, you've worked everything else out so far, You must have a reason for this." I still reserve the 'right' to hope that Dr. Tenjarla is wrong...but it is okay if she's right!

James has been pretty perky and friendly, giving out lots of hugs, kisses and handshakes and generally being a pretty sweet encourager. Many folks he has interacted with have said that he 'made their day' (or in some cases, their night). Everyone loves to see him sign and they just can't get over how 'smart' he is. James is very good at 'working the crowd' and he just eats it all up!

Today, there were some street performers who visited the hospital and performed downstairs in the open area. We decided to go and it was worth it. James got to 'spin' a soccer ball, with a little help from one of the performers. They also serenaded him with Twinkle Twinkle Little Star and one of the performers signed with him a little bit...

We were able to get some photos with one of the hospital's loaner cameras. I will post some when I can find a computer with a CD-ROM drive I can access.

Katie and the home crew have continued the work at the house and we are not yet ready to give up on our hope of moving in to our new home by 2 or 3 Nov. Today they sanded the painted walls (they were sprayed and get bumpy...my Mom and Aunt will come down to do the final coat with rollers). In the meantime, everyone and Mr. Bruce will be working at the house tomorrow and they plan to come for a visit on Sunday.

Please pray:

1. That James' site will heal thoroughly and quickly and that the surgery and GI folks would have wisdom to decide if it would be best to save the site or let it heal all the way and put in yet another g-tube.
2. For wisdom about his IV feeds--that we would get the right amount of protein, fluids and anything else that he would need all mixed in.
3. That things will continue to progress with the house--folks would be able to come when they've said they could and/or when we need them.
4. That I will be able to get in touch with the plumber and that he would be able to come early next week to install the fixtures.
5. For the family's safe travels up and back on Sunday.
6. For Vern generally as he has all the home things on him, plus work and being concerned about his sweet boy in the hospital. For Katie as she works extra hard to fill in my spot while I am gone. For Owen, Becca and Carrie as they continuing helping and trying hard to be sweet without Momma hugs and loves.
7. That God would be glorified in all of this and we would keep resting in Him.

Thanks for stopping by!

Love, Stephanie

Back at the hospital

This run of methotrexate and vincristine seem to be giving James quite a challenge. Monday evening we realized that something wasn't right with his g-tube site. It looked thinner and looser and sort of purplish-gray. I called the clinic on Tuesday morning and they said since is wasn't pink or red and he didn't have a fever there wasn't too much they could do. They said keep dressing it like we had planned, give James meds for pain and call them if anything changed.

Thursday we had a hard time keeping him comfortable and that night, when we changed out his dressing, we all thought we could see the balloon inside his tummy that holds the g-tube in place through the ever-thinning and widening hole. We called and talked to the on-call doctor and she said come on up. We'd already planned to try to get him in to see his doc on Thursday after he was so uncomfortable, but the kicker was the view of the balloon. He'd also had pretty low white counts (ANC=117) on Monday.

We made it to the ER by about 3 a.m. this morning and as I lifted James from his car seat to carry him in, his g-tube just fell out onto the parking garage floor. (Eeeewww) Fortnately this seemed to relieve the pressure to the site and he had less pain than he had before, PTL.

Right now he is on more antibiotics, we think it is infected again, but not sure with what yet. The wound/ostomy nurse set him up with a pretty spiffy dressing and we are supposed to take care of it. Tomorrow James will get IV feeds (TPN) with a greater portion of protein to , hopefully help him heal.

The one good thing is that the things we did to help prevent this did seem to help with the erosion from the outside. Virtually all the erosion to the site was from the inside, Since he will have a similar course of treatment every 12 weeks for the next 22 months, we need to figure out some way to prevent or minimize this erosion to his g-tube site. I would appreciate your prayers for wisdom as we work together with his care team to devise some sort of plan.

We have been working hard on our house with the goal of being able to live in it by 2 or 3 Nov. By God's incredible mercy, we are still very hopeful we can make it. Katie, Owen, Becca and Carrie worked there today and we have made a good deal of progress in the past week. Please pray for them and for Vern as we are all 'dividing and conquering'.

I hope to have an opportunity to update again while we are here. We have been having technical difficulties with the computer at home... and we have been VERY busy. Your notes and e-mails have been a big encouragement...thanks so much!

Love, Stephanie

Home again, home again...

We are grateful to be home. We came home Tuesday afternoon. It looks like the staph infection that was growing out in James' blood culture looks to have been caused by some sort of contamination since none of the other cultures ever grew out staph. This is very good, though they were treating him for staph, just in case.

We came home with IV antibiotics (meripeninem--I have know idea if I am spelling that right, the label says Merrem). The entero bacteria that grew out in his grew culture was very sensitive to this drug, so all the doctors agree this was the way to go. I have to give it to him three times a day (7a.m., 3p.m., 10p.m.), so that is a little more challenging/limiting that the vancomycin we did twice a day before. However....it is far less limiting than being in the hospital!!!

The weather has been phenomenal here--anyone from Minnesota want to plan a visit? :*)... we are all looking forward to sitting on our front porch in the evenings and watching the stars. It is very dark out here and as Owen said last night as he was staring up at the sky when I brought him home from the house, "Momma, it's really neat. The more you look at the stars and try to count them, the more there are!"

We have lots of plans for progress on the house over the next several days. Vern has school holidays on Friday and Monday and we have friends planning to help us get the bulk of the painting done on Saturday. We all missed church on Sunday and are looking forward to being back this week... all Lord willing.

Thanks for your notes, I am trying to figure out how to respond via e-mail easily. Thanks for being patient with me. Pam, I'd love to hear more about your new little girl and life with two soldiers in the family.

Love to all... Stephanie

Home tomorrow?

James just finished getting a blood transfusion (because his hemoglobin dropped to 6.6 this morning). He is looking much pinker and less tired. Once we get a visit from the GI nurse to switch him to an adjustableg-tube, we'll head out for a walk. He is doing much better now that we have him on all the right antibiotics. We are waiting til tomorrow to see if perhaps the staph infection was due contamination of sample, since he hasn't grown out any more staph so far.

They are working on getting IV antibiotics set up for home and we are hoping to head home tomorrow (Tuesday), Lord willing.

Please leave a note if you can. We love to hear from you and know who is following James' progress. Thanks for stopping by.

Love, Stephanie

We're baack

We made it home fine Wednesday and we had a day at home too... well, sort of. Owen and I drove to the scratch and dent appliance place Thursday and took advantage of Georgia's 'no sales tax on energy saving appliances' weekend (Oct 4-7). We were able to find all the appliances we need for the house except the gas cooktop--we will keep looking for that one.

Thursday night, James was cranky and never really fell off to sleep. At 2:00a.m., he spiked a fever of 38.6*c (101.5*F). After talking by phone with the pediatric oncologist on call, Hannah, James and I headed off to the emergency center in Macon. They gave him antibiotics and fluid, drew some labs for culturing and said we could go home, but to call if James got another fever.

Friday James did well, until bedtime. He was pretty uncomfortable. We thought maybe he was in pain because he was shaking and crying and was inconsolable--even with Lortab. At 11 p.m., he spiked a fever again. This time it was 38.8*c (101.85*F). We talked again to the oncologist on call and headed back to Macon. Everyone communicated well and it turns out that the previous culture was already growing out gram negative rods. This includes scary little bacteria like E. coli, klebsiella and entero bacteria. All fine bacteria in the right place, but not in the blood. James got more antibiotics, gave a little more blood for more cultures and took an ambulance ride to Children's. Hannah and I followed in the car.

Now that we know what he needs in terms of antibiotics, he is doing MUCH better. It turns out, his culture also grew out staph, but we don't know which kind yet.

Vern and the other children drove up to spend the day with us today.

Thanks for checking in on us.

Love, Stephanie