Our awesome God

Well, we here at the Skelly household hereby proclaim "Pray for James" a resounding success. No credit to us, but all to the LORD, with HUGE THANKS and gratefulness to all who participated (by signing up and by just praying without signing up)!!

In spite of the sign up not working entirely like I had envisioned, and the links from the blog here not working like they were 'supposed to' (due, primarily, to my ineptness and inexperience), 19 people signed up for 22 of 47 slots to pray for James. Others called or e-mailed and said they couldn't sign up for a particular time, but that they would be praying extra for James. A dear friend from church and member of our community posted a note on her blog, asking readers to help cover James with prayer.

We, including the children, were blessed and humbled as we watched the sign up e-mails come in the first evening. There were many names we'd heard, of people we do not know ourselves who have been praying for James and our family.

Yesterday, Hannah and I saw from a computer at the clinic, that our own "Skelly children" signed up to fill a gap. Later, they told me that one had prayed "that someone would sign up for 4:30" and when they checked after their time, someone *did* sign up for 4:30 (Thanks, Mrs. Stevens!)

Along the way, some would suggest we e-mail a bunch of folks, friends who might not be reading the blog, to tell them. I didn't feel like we were supposed to do that, so I didn't. I didn't have a good reason, just a check. This morning, Katie commented that it seemed that God wanted us to see that this was bigger than us, bigger than our church, bigger than what we could do ourselves and that we would be humbled and He would get the glory.

As the day progressed yesterday, the children asked what we should do about the night-time slots that weren't filled. They thought I was going to assign them times to wake up and pray! LOL! I had this sense that the Lord was going to fill these slots and I looked forward to hearing from folks over the next days and weeks about how they woke up in the night and prayed for James. I expected He would wake *me* up to pray, but He didn't. I had a wonderful night of full sleep (James and Hannah did too!) I do not even remember my head hitting the pillow.

In this morning's e-mail, I learned from a sweet friend in Minnesota that her church's sister church, in a nearby larger town, has round the clock prayer. One hundred sixty eight hours a week, they have church members who come in for an hour of prayer around the clock! So this friend put a note in the chapel asking folks who were there to pray for James during their hour! Providentially, one of the people who prays early each Friday morning was Katie's and Hannah's piano teacher (and lover of our eggs and chickens) when we lived in Minnesota!

This morning, Hannah told me that when she was praying for James before "pray for James day", she prayed that lots of people would sign up. She said that even though all the slots weren't signed up for, '22 people is still a lot!'

Although I know that all of us are special to God, I believe that James is 'one of the least of these' that Jesus spoke about and that he has a special place in the Lord's heart. Sadly, people like James are easy to 'pass by' in this world. So for me, as his Momma, to see so many folks so willing to pray fervently for my little boy touches me deeply in a very special place in my heart and I am SO VERY grateful!

THANK YOU from the bottom of my heart and very depths of my soul!!! May our awesome and mighty Lord bless you 'real good'!

I guess I can't finish without telling you how James did yesterday and is doing today. In a word, GREAT!

We did have some normal doctor's office delays and there wasn't enough blood for his chemistries, so we had to get more and rerun the test. This delayed his spinal tap and chemo, which he ended up getting around 12:30. Everything related to the clinic went off with out a hitch and while we had to wait to do things, when we were done, it had all seemed 'too easy'. We were not able to see anyone from GI (some big miscommunication which we will need to work on for next time!), the Wound Ostomy Nurse came to see James and was pleased with his site, has a baseline for what it looked like on Thursday and said, 'call if ANY thing changes!'

Just before James got his spinal tap, he got versed (the happy juice) by g-tube. It wasn't too long before he was pretty relaxed and by the time Nurse Stacie was done with the spinal tap, James was sound asleep. Shortly after, Nurse Liz, who has been doing pediatric oncology nursing for 30-some years, came in to give James his vincristine with a butterfly needle. She was great and had no trouble getting the needle or the chemo in and we learned a lot about the history of treating pediatric cancer from our visit with her. While we don't look forward to more vincristine, we will appreciate the opportunity to learn more from Nurse Liz.

Dr. Keller said that his counts are TOO good (WBC 5.61; Hgb 11.2; Platelets 820K; ANC 4040). He is concerned that James may not be getting enough chemo to actually serve a purpose. So, Dr. Keller increased the dose of the same drug that he increased last time (mercaptopurine or 6 MP). If all continues to go well, Lord willing, we will do local counts and chemo at home in one week and three weeks and return to the clinic April 3rd!

Please do continue to keep James in your prayers. Funny thing about chemo is each kind has it's own purpose and wreaks it's own havoc in it's own time. Thanks for encouraging us and ministering to us by sharing this time of focused prayer for James!


Love, Stephanie

A hundred men

Most of us remember Mike Mulligan and his steam shovel. Some of us are still pretty intimately familiar with them! You may recall that Mike Mulligan always claimed that he and Mary Anne could dig in a day what a hundred men could dig in a week.

Well, on Saturday, Mr. Bruce came by to run the engine on the bulldozer and since it needed to run anyway, Mr. Bruce and bulldozer pushed over in about 20 minutes, what a hundred men could have pushed down in....well, I don't think 100 men could have pushed that tree over!

Figuring out the best place to push.
Getting some *umph* under the roots to loosen things up.

This was the exciting part (the back of the bulldozer tracks are up in the air!).

The tree is down and moving to the burn pile.

"Hey, this is kinda fun!"

In the burn pile.
Becca, Carrie Rose and James watch from a safe distance.

Mr. Bruce took the tractor home to do some work and when he brought it back, he smoothed over the dirt we had cleared of roots and pushed over another smaller clump of trees. We are blessed to be in such a generous, helpful community.

Love, Stephanie

You can still sign up to Pray for James here. If you scroll down, you can find more information about Praying for James!

Happy Birthday to Vern!

Vern had a birthday last week. We like birthdays...they're sort of like holidays... sort of. Vern turned 46 and he was feeling a little old. I think that had more to do with the clearing work we have been doing around here and his early mornings to get up and grade papers for school than it does with his age, though!

I am grateful for my dear, sweet wonderful husband. He enjoys the quiet of being home together. He LOVES our children. He takes good care of us and works hard to provide for our family--not just at his job, but around our homestead, too, by planning ahead and working to be sure we can always 'eat the fruit of our hands', as the Lord blesses. Vern is manly, but not macho. He is a firm believer that all the jobs around here are his and he welcomes our help. That means when we fall behind or are worn out (usually from special projects, but sometimes from life...and sometimes from our own laziness :( ), he jumps right in to help us catch up. He knows it helps everyone--and he is right!

He moved us to a place where we have community and a wonderful church home. Where we can learn more about loving the Lord and living for Him and teaching our children to do the same.

Vern is responsible and full of integrity. He is not a hard-charging command man or visionary, but he is steady (see Debi Pearl's book, Created to be his Helpmeet) and he leads us all gently along, one babystep at a time, most days! His steadiness brings comfort, peace and predictablity when life does not.

One thing I especially appreciate about Vern is his special love for James. Many men would struggle having a child with special needs. When James was born and the doctor told him that they thought James had Down syndrome, his first response was concern for me--who who would tell Stephanie? was Stephanie okay? Vern has always seen James for the precious gift that he is and he takes pride in all of James' accomplishments, great or small.

I love you, Mr. Bear! Happy Birthday... and many, many more!

The birthday guy with his two littlest treasures.

Love, Stephanie

You can still sign up to pray for James here. You should also be able to type in www.mysignup.com/prayforJames. Thanks to all who have signed up! What a blessing to see all the sign up reports come in by e-mail last night! God bless you richly.

Pray for James--the link

[Updated to add: some, including me, are having trouble with the link below, but it is working for others--including me, some of the time! So... I am including this link too. One should work for you. Once you get to the page, be sure to scroll down to find the sign up sheet!...God bless you... and thanks to my Dad for calling to let me know it wasn't working!]

We sure appreciate the prayer support all of you have covered James with over the last year (it will be one year Thursday since James got his initial diagnosis of leukemia). You can sign up to help cover James with prayer for 24-hours (30 minutes at a time) at this link. James will be getting his vincristine, which has, in the past, been hard for him to tolerate, Thursday morning sometime around 9:30 or 10 or so, depending on how things flow at the clinic.

Thanks in advance for what you are willing to do for James...and the glory of God!

With love and gratefulness,

Stephanie

P.S. One sweet friend called me to let me know she would be praying, but she was going to visit her sister with Alzheimer's this week and would pray, but not sign up for a specific time, because life is unpredictable there. PLEASE know that we aren't grading anyone for signing up or not. We are just giving any one who can an opportunity to sign up to cover James in prayer for a day....

Big boy!

Recently, James decided he wanted to try yogurt. We put it through his g-tube (thinned with milk and beefed up with protein powder and more probitiocs). It has been a while since he's eaten much.

I don't know if the interest was in the yogurt or the spoon and I'm pretty sure more ended up on James' sweet little face than in his tummy. But this is definitely moving in the right direction.

James is a pro and 'bear crawling' on all fours. This, his therapist in Minnesota told us, is great for developing the strength and control in his hand, wrist and forearm. Which is, of course, important for feeding himself and writing or coloring.

He likes to 'draw' and 'color' and I am amazed, and grateful, to see how well he can hold the pencil. I really don't remember his brother and sisters doing so well at that age.

Saturday morning, while I was fixing breakfast, James pushed a chair over from the table to the sink(they have felt pads on the legs that make them easy to push), climbed up in the chair, took a dish cloth and started working on jelly roll pan that was in the sink. He had a GREAT time!

Thanks for checking on us...hope to post more photos and that pray for James link soon. In the meantime, we need to get out in the garden!

Love, Stephanie

More

Since some of you enjoyed 'Brothers' so much, and I had some more photos of them having fun, thought I'd go ahead and post them.

Even when we were still in Minnesota, Owen had a 'circuit' that he would gallop with James on his hip. It was great exercise then, giving James a chance to practice balance and develop the strength to hold himself up.

Now, James has developed (and recovered!) enough that he can 'piggyback' and hang on himself. This is, of course, great for him too. And fun... to do and to watch. You some come sometime and here how James giggles!

Ready, Go!
Action shot: James laughing heartily as Owen gallops past the camera!

Hanging on!!!
Last lap... the horse-y is worn out!

Love, Stephanie

Pray for James

James is doing wonderfully well. And we are very, very thankful.


This coming Thursday, February 28th, James will get another kind of chemo, vincristine. He will also get steroids for a week.


In the past, this has caused James some big problems. The vincristine and steroid combination were responsible for the leaking around James' g-tube that ended up being a gastro-colic fistula and required surgery to repair and place a new g-tube (Mar 07). The vincristine also caused entero colitis, which necessitating an ileostomy (Apr 07). We are hopeful that once all his chemo is completed, his ileostomy will be successfully reversed. The last two doses of vincristine with steroids caused James g-tube site to erode. This resulted in two- 5 day hospital stays July and Oct 07) and IV feeds for a while to let the erosion heal and James' intestines get back up to full operation. I initially had this 'great' idea to put links in to the blog posts from these events, but in the interest of getting this done and getting to bed--it is 11:58p.m. as I finish typing this, no matter what time it says it was posted!--I'm just giving you the months, and, if you really want to go back and read it, you can find the posts in the archives through the right side bar on the page!!!)


The problems usually take about one to two weeks to show up.

Sometimes sickness is just as much a spiritual thing as it is physical and we believe that the Lord cares very much for James and our family and desires to be glorified in this whole process. He has so far to us, for sure!


What we would like to do is have a focused 24-hour period praying for James. To, hopefully and Lord willing, cover the whole 24-hour period, we are setting up an online sign-up sheet! Please watch for the link soon--I hope to post it Monday or Tuesday.


The focus for the prayer time includes (but is not limited to! :*) ) praying:


1. that the vincristine and steroids would attack their intended target (any remaining, but unseen leukemia cells).


2. that the Lord would protect James from any side effects from the vincristine. Especially any slowdown in the movement of the intestine.


3. that, in spite of the steroids in his system, his body would continue to heal and protect itself from breakdown and erosion.


4. that James' counts would remain stable, there would be not infection and no need for a hospital stay.


5. most importantly, that God's perfect will would be done and He would get the glory for it!



We are so very grateful for your prayers on James' behalf. Thank you for your care and concern and your encouragement. We are blessed and James is too! May the Lord bless you richly.


Love, Stephanie

Brothers

James loves his Owen. And Owen loves his James. I think it has always been this way. Owen prayed for a brother for nearly eight years before James came along. When James was born and we learned just how special a little brother he was, Owen responded by saying he would make his house big enough for James to always live with him. This morning, James was feeling pretty punchy and Owen must have been too. They had a great time wrestling on Momma's and Daddy's bed. Often Owen will get right down on James' level and play the way James wants to play and James loves him for it! Other times, he will work with James to do fun things that challenge James and teach him something new, or practice something not-so-new.

I love to watch them play and work together. I'm so glad they are brothers.

Love, Stephanie

Never a dull moment

This morning we got up and got ready to take James to Macon for lab work. Owen was going with me to help with James and Becca and Carrie were coming along for the outing. Hannah and Katie had pretty significant lists they were staying home to work on.

When we got into the car, Owen looked like he was in pain and said that his head hurt. He decided he would take some tylenol and come along. When we were about half way to Macon, he said something about having felt like he was going to 'throw up'. I thought he meant when he had the headache, before he took the tylenol. Not long after that, he was not looking well. Then he was looking really anxious. I asked some questions--a little too late--and then we started looking for some of the plastic cups we were sure we had brought for drinking. Again... too late. It all happened so fast, I was impressed with how quickly Owen grabbed for his hat! (It's not waterproof, he told me later). Shortly after that, I was able to pull off the road and decided pretty quickly that, half way there or not, we needed to get Owen home. So we turned around and called home. By the time we got home, Becca was feeling and looking a little green. She never did get sick (no one else did either) and was pretty perky by the time Katie, Carrie, James and I left again, for our second attempt.

Owen fell asleep before we left and took a good long nap. I wonder if the headache was from missing sleep and fluids. He is fine now.

We made it to Macon just fine and had our easiest blood draw yet. We had a new-to-us lab tech and it didn't take much to convince her to do a finger prick instead of drawing blood with a needle and syringe. However, I forgot to give her the fax number to send the lab results too. That didn't really matter, though, because the lab results didn't make it back in time.

Thankfully, we were still in Macon, finishing up errands (one was a fun trip through Michael's--it's been nearly forever since I have been to one and longer for Katie. It was inspiring!...but I digress). We ended up stopping by the pediatrician's office. They have a night clinic that is separate from the day clinic, but they were able to get the lab results for me. I called the oncologist on call--thankfully it was someone we know, who knows us. We verbally reviewed James counts (WBC-4.49; Hgb-11.6; Plt 777; and roughly figure the ANC--~2600). Dr. Quayad said we were cleared for chemo. It was one of those times I was really glad to have a cell phone!

So we came home, at supper, had devotions, cleaned up and now most everyone is off to bed--some are up reading in the quiet. I like these quiet moments--we really do get them on occasion!

As you think of James, would you please join us in praying for this round of chemo--that God would be glorified in James NOT getting mucousitis (the sores on the mucous lining of the mouth, esophagus, stomache, and intestines), NOT having nay fevers, and NOT having any need to stay at the hospital?

Thanks for your prayers for us and James.

Love, Stephanie

Becca's birthday

On February 12th, Rebecca turned eight! So hard to believe...she is growing up so fast! Her big request was to do her birthday when Daddy could be home for the meals, so on her day, we sang Happy Birthday--we have a few versions we like to sing!--off and on throughout the day. On Saturday we had brunch--eggs-in-a-basket, bacon, country fried potatoes, kiwi and fruit juice. We also had lots of outside work to do during the day and supper was grilled hot dogs (a special treat for us, we get Hebrew Nationals...mmmm), french fries and corn-on-the-cob.

Becca enjoyed a farm theme (she picked it) and gift-wise, she had a pretty horse-y birthday! Among her gifts were a 'how-to-draw-horses' art book--very nicely done and we are getting started on it, and several horse books--one a fascinating book of breeds in addition to _My Friend, Flicka_, _The Black Stallion_, _Black Beauty_. Since Vern was home for four days over the weekend, we enjoyed reading some aloud. We especially enjoyed _The Black Stallion_.

The table
Birthday signs, by Owen, the sign and light guy!
Becca really wanted party hats...these are paper 'straw' hats to go with the farm theme.

James wanted me to wear my hat this way, so he could 'honk' my nose!
By dinner time Saturday, we were too full and too tired for cake, so we save it for Sunday.
The birthday girl!
She chose carrot cake with cream cheese frosting.

Love, Stephanie

Hog Killin'

[Ed. note: I tried to pick the least graphic photos of the actual hog killing/processing part. The result still may be more than some metropolitan stomaches care to bear. Please consider yourselves warned! Your mileage may vary.]

Saturday, February 9th, Vern, Hannah, Owen, Rebecca and I loaded up into the little car in the wee hours of the morning--well, it was still dark--and headed west. We drove about two hours to a little town called Woodland, near Pine Mountain, GA (home of FDR's Little White House and Callaway Gardens). Our destination: Hog Killing at the Old South Farm Museum.

We arrived early and checked in with some 200-odd other folks who came either to relive old memories or learn a new skill. There were a number of families there to learn like us. Some planned to raise a hog or two, others planned to hunt wild hogs and wanted to know how to slaughter and butcher.

The facility has a huge museum with LOTS of equipment and other items from a time in our past when most folks knew what it was to farm. Owen is here at the museum with an old vegetable cart. He is hoping, someday soon, to build us a Whizbang Garden Cart, and this looked like it could have been a predecessor!


The unsuspecting hog awaits its demise. I didn't go watch, but Owen did. They draw an imaginary X from left ear to right eye and from right ear to left eye. Right at the intersection, the hog is shot with a .22 . The hog, we are told, dies immediately, but then there are the involuntary muscle spasms that resulted in the hog banging itself against the barn wall. Once the hog relaxed, they pull it from the pen, through the people and to the center where they demonstrate how to 'stick' the hog in order to bleed it out. Later on, in one of the workshops, a helper told us that when he slaughters his hogs at home, he sticks the hog immediately after shooting it so that the involuntary spasms help to bleed out the hog more thoroughly.

The HUGE vat of water at the ready for scalding the hog. The hog must be scalded in order to scrape off the hairs. At first, we were not too excited being downwind of the fire and thought that perhaps we would use a smoke-free method to heat our scalding water. In hindsight, we realized that perhaps the smoke smell was preferable to some others we could have experienced that day! The hog was actually scalded in a 55 gallon drum laid mostly on its side.
Vern takes a turn scraping the hog. Owen (in the blue sweatshirt and cap) and Becca (in the read sweatshirt and blonde french braid) await their turn at the scraper.
Once the hog was mostly cleaned of hair, it was strung up by the hind hocks, given a final, thorough scraping and rinsing and then cut open and eviscerated.
Here you can get an idea of how the hog hung. You can just see the scalding barrel laying to the right of the pallets on the ground. Water from the heating vat was put in the barrel for the scald and cooled to the right temperature (165*F) by adding cold water from the hose.

The fellow that did the class was a real hoot. He has been doing this for some 35 or 40 years and is 75 years old! He was full of stories of hog killings (and other country activities) from his growing up years.

There were a number of demonstrations and samples. Below is soap made from lard.
And pork skins. Vern tried cracklins, but I missed out on that one!
They had an old time smoke house operating with an old wood stove puffing away...
Into the old smokehouse.
We also attended a curing class and learned the basics of salt curing meat. The man who taught the class grew up curing meat and is now an ag professor at Fort Valley State University. He was so intent on helping us be successful, he gave his home, office and cell phone numbers for us to call if we ran in to any trouble during the curing process. As part of the class, we came home with a large ham to cure and the cure (salt, sugar, etc) and a booklet to help us remember all the steps.

The last class we benefitted from was a sausage-making class. It was hands-on, ask questions and we learned a lot, picked up recipes and came home with some 8 pounds or so of homemade sausage, besides the brunswick stew we ate and brought home.

According to Mr. Bulloch, the man who sets this up, this is the last hog killing (open to the public) in the entire southeast. If you're looking for an agrarian field trip, we recommend it! Vern had been reading a couple of books on slaughtering and butchering hogs and he says with the visual from the Hog Killing day, the books make a whole lot more sense.

Love, Stephanie

Garden Week

The first week in February, we realized we were late getting our garden started. We decided to do a hand's-on week of school--Garden Week. Of course, this will go on for longer than a week! But we needed a good focused week to get started on this project, or it would never go. A lot of things in life are like that.

We started out marking the garden--not as easy as it might seem. We wanted to be sure it looked right in the years to come, so we worked to be sure the garden is parallel to the house. Katie and Owen were instrumental in the process and we did several contortions with tape measures, speed squares and things we made up to look like surveying equipment. In the end, we were pleased with the result.

Owen did the bulk of the post hole digging--not a terrible job in sandy soil, but we had to go deeper for more support. Once he got one hole dug. My Momma's helper team and I filled in the holes and tamped down the dirt.

Happy helper!

(note: the tractors are not ours. they belong to our friend Joey, who sold us the land, cleared the land, framed up our house....we would not be where we are without him! Thanks, Joey!)

After some good physical effort and a few days, the garden is taking shape. You can see the fence is up, and the back raised bed is in. The little bed in front of it is an intensively planted bed of onions--some plants and some sets. Sweets, yellows and reds.

The digging to the left of the onion bed is the beginning of preparing the potato area. We found a HUGE root which we alternately burned and dug out.

So far we have spinach, leaf lettuce, cabbage plants, broccoli plants,
pea plants and seeds and a bed of mesculun mix....mmmmm!
As time allows, I could really go hog-wild on posting photos. I finally discoverd how to compress the photo files and they actually upload in a reasonable amount of time now. But I don't know if they download faster.

We went to a hog killing a week ago. Want to see photos!?! We learned a lot and hope to raise our own to do next year. Last night, we had an incredble storm and are grateful to see how the Lord used that to BLESS our garden! The pea seeds and mesculun are popping up like crazy this morning. The air seems really clean too!

Thanks for checking up on us... we'd love to hear what you're up to!

Love, Stephanie