The Poppins

While we were away, we missed out on some fun. Since we left the camera at home, we got to see some of the fun we missed! And you get to too!

Owen Poppins demonstrates proper technique.

Katie Poppins sets the standard.

Becca Poppins--with the perfect shoes for the job!

I heard there would have been a Carrie Poppins, but the umbrella was almost too heavy for Becca Poppins.

Have a wonderful day!

Love, Stephanie

Belated update

Well, I tried to do an update from the hospital Saturday evening and it was lost in cyberspace. Saturday was a boring day in the hospital day--which was just fine with us. We snuggled a lot and watched LOTS of episodes of the old TV Superman show. James is pretty fun to watch--he does the motions to the whole "faster-than-a-speeding-bullet; stronger-than-a-locomotive; able to leap tall buildings in a single bound. It's a bird, it's a plane......"

Mostly our goal was to keep him lying down, so the ever-so-slight pressure of the g-tube button inside his belly didn't press inside preventing further erosion and allowing healing to begin. Saturday night, we began using James' g-tube for feeding and Sunday morning he got a bolus of formula. There was no leakage and it didn't seem like it was getting any worse, so they discharged us on Sunday.

Between the time James got his IV out and we left, he was walking around (with the help of a Little Tikes shopping cart toy) and visiting some of the nurses. One even commented that she didn't know that James could use his legs! He was really doing great and all the nurses that had seen him back in April (when he had colitis and got his ileosotomy) were pretty excited for him. Of course, we were glad to head home and even more glad to BE home!

During our visit at the hospital, we ran in to Nathan Suerdieck and his mom, Allison. Nathan was having a BMT for a rare disease called, HLH. It usually occurs in small children, but Nathan got it last year in his teens. Just a year ago, they weren't sure he would even make it. Nathan has lots of medical issues to deal with now, but he has a great attitude and Allison is a big encouragement to me too. They live just 25 miles away from us, but we had lost touch when we all left the hospital... so we exchanged info and now we can keep in touch! If you would like to learn more about Nathan or pray for him (I know he and his family would be grateful), you can look him up on http://www.carepages.com/ and enter his name.

When we 'moved in' from the car to the hospital, we met a very helpful young man on the elevator, Germaine, whose five-year-old son had been in the hospital for a week with inexplicable high blood pressure. We talked and shared and were able to pray with him. I'm sure he would appreciate any prayers you might offer for his precious son.

One thought I did have about regular hospital visits is to wonder if James would do better when he finally gets his ileostomy reversed, if we have some regular contact with the hospital and some of the nurses.

I should have written sooner (I did try last night, but couldn't sign it), because I don't remember all the silver linings from this visit, but there were more...

As always, the best part is coming home! Thanks for praying for us and checking in on us.

Love, Stephanie

In the hospital

James is doing great. Dr. Tenjarla, his GI doctor, when ahead and admitted him last night. He can have anything he wants by mouth, but nothing by g-tube. Miraculously, he has taken all of his meds by mouth and, most of the time, willlingly! (thanks, in part, I am sure to grape flavored syrup!).

He has an IV and is getting fluids and he has been eating some, which is good (though the choice of foods is certainly not optimal!). Since we haven't used his g-tube in since 10 a.m. yesterday, it is doing much better and we do not think it is going to erode may more.

James got his last dose of steroids this morning, by mouth, and we are hopeful that things will only get better from here.

We have been blest to have nurses on his team--that means we know them and they know us. All have been tickled to see James and we are glad to see them too.

I haven't seen his counts yet, but have heard they are very good. His protocol calls for James to get chemo tonight, but they are wondering if they should give him a break. I think we should press on, as long as his counts are good.

Other numbers: While home, we figured that last year, between 28 February and 20 November, James and I (and mostly Hannah) spent at least 118 days in one hospital or another. Our last discharge date was 20 November, 2007, which was 106 days before our most recent admit (last night, 5 March). The main reason we are here is to prevent James' g-tube from further eroding. As soon as we can safely use the g-tube again (Sun, Mon, Tues would be my not-very-educated guess--the educated folks aren't making any guesses yet :*)).

The hardest thing is that James' IV is in his hand (we had the choice of putting it in his main signing hand or in his walking foot--so we chose the hand). Taping up his hand is almost the same as putting a gag around his mouth, but he really doesn't want to walk either, since he is uncomfortable using his taped and boarded arm to hold on to things. Occasionally, he growls (James on steroids), but mostly he is doing well. I think he'll be really glad to 1) have the family visit or 2) go home!

Later I hope to share some more thoughts on our ending up here and some of the silver linings.

Thanks for checking on us! Be blessed!

Love, Stephanie

A good and timely quote

"Pain and suffering in this life are inevitable. Misery is optional."

Love, Stephanie

I spoke too soon

Actually, the g-tube was looking better--we all here agreed it was. In fact, it still looks pretty good from the outside. No signs of cellulitis or other infection yet, which is good. BUT, The actually g-tube button (called a MIC-key) is getting looser and it is looking to us like the site is, once again, eroding from the inside out.

SO, many phone calls later, we have an appointment with James' GI doctor this afternoon at 4p.m. We'll leave home around 1p.m. to allow time to park and all.

We have packed as though we were having a planned hospital stay, so we are prepared in the probably likely event that James' is admitted. We've not gotten up there this early before, so I'm really not sure what to expect. Whatever happens, I think we're covered, Praise the Lord!

Love, Stephanie

It's raining, it's pouring

And James' g-tube site is improving! Praise the Lord! So we are still home and really grateful. James is a little cranky, mostly due to steroids, I think. His g-tube site is still tender and needs to heal more. So please don't stop praying!

Thanks! And God bless you... each and every one!

Love, Stephanie

A quick update

We have been busy here. James has been a little needier the last couple of days and we have been working on homestead things--like clearing land and trying to plant 2 peach trees and a fig tree which were gifts for Vern's birthday. We hit another big root in the garden too. It wasn't a pine stump and so didn't burn like the second stump did. Today Owen was able to dig down further and cut it out. Yeah, Owen!

James is doing well, all things considered. His g-tube site is showing some signs of begin to erode. I spoke with several folks today and the wound/ostomy nurse attributes it to any form of pressure combined with steroids. James' oncologist said the steroids should be in his system enough to inhibit healing until day 10--day 1 on steroids was last Thursday, so day 10 is this Sunday. We have been using tylenol some to help with James' discomfort--the g-tube site is tender--and we are dressing the g-tube differently. If this doesn't help and it gets worse in the next day or so, we will need to see about getting James in to see Dr. Tenjarla, his GI doctor.

We continue to be grateful for your prayers and encouraging notes. We always enjoy hearing from you!

Thanks for checking on us.

Love, Stephanie

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