Yesterday was a good day. The last day, hopefully and Lord willing, that James will ever have had an ostomy bag. Already his little belly looks so much better than it has in the last three years! Not to say we don't still have a long road of healing ahead of us.
We do.
There are lots of things to share from yesterday, but for this post, I'll stick to the surgery and what we are looking at for the next while.
After the surgery, Dr. Parker came out to let us know how things went. He was pleased, but remains cautious. His cautions have to do mostly with the fact that James had Hirschsprung's disease as a baby. Once a child has Hirschsprung's disease, any subsequent blockages or enterocolitis are automatically 'blamed' on Hirschsprung's, because they might have missed some bad sections of intestines (they remove those parts that have no nerve cells). At any rate, while we and the oncologists were assuming all along that the enterocolitis that necessitated the ileostomy was caused by James' chemo (vincristine, in particular), the surgeons were assuming there were missed sections with Hirschsprung's disease.
So... what that means is, while the surgeons are in favor of re-connecting James, they will remain only cautiously optimistic until James' colon 'proves itself' with use over the next 6-12 months.
This was not a surprise to me. But after surgery, Dr. Parker spent a good bit of time re-iterating everything that could go wrong over the next 6 months to a year and what we need to watch out for. He does believe we likely have all the bad sections of colon removed, but he can't prove it. The only way to prove it is to hook it all up and try it out.
While surgery went well, they won't call it a success for a while yet.
Now that surgery is done, we look forward to the best case of good things that need to happen.
Over the next days, we need to continue to manage James' pain. I am truly encouraged by the epidural. It blocks the pain from about the bottom of his rib cage to about an inch below his belly button. He does have some breakthrough pain and there are meds prescribed to cover the breakthrough pain. So far, James has been pretty good about telling us when it hurts. Us is limited to me and Hannah though. When other people are in the room, he either closes his eyes or puts on a brave front until they leave! Of course, if we don't know he hurts, we can't do anything to help relieve the pain. Please pray for wisdom here.
Hopefully in the next 2 to 3 days, James will have bowel sounds (or tummy rumbles), pass gas, and stool. All that will be the first steps to prove that this 'is working'. And then he can start taking clears by mouth. In the meantime, poor guy is sure licking his lips a lot! We are putting salves on his lips and he can have a swab with water to 'whet his whistle'. Zorro has been a great comfort so far. Pray it holds! And the tummy rumbles, gas and other proof come just at the right time--after things are healed enough to handle the activity.
Once he tolerates clears, we'll be watching for any bloating (a bad sign of things gone wrong) and if all is well, James will be able to eat some 'normal' food. Then we will watch again for any sign a bloating (still a bad thing) and proof that things are moving like they should.
Dr. Parker said if everything works 'best case', we should be able to go home Tuesday or Wednesday. If anything doesn't, all bets are off. I, for one, would love to home next Tuesday or Wednesday. Even more than that, I would love for everything to work 'best case' and to give God the glory for it!
Showing posts with label Down syndrome. Show all posts
Showing posts with label Down syndrome. Show all posts
Thursday, June 3, 2010
Monday, May 31, 2010
Hannah, James and I are pretty settled in the Ronald McDonald house just a few blocks from Egleston. Hannah and I are dreaming of sleeping. James is dreaming of escaping.
He's already tried.
I realized on the drive up, that my mind has been mostly consumed with post-surgery pain management. That made it difficult to really think ahead and make a good plan and packing list. I'm feeling really inexperienced right now, but I suspect tomorrow will bring a flood of familiar memories. Sleep tonight will help, I'm sure. In the absence of sleep, meditating on Scripture will be a very good thing.
But I am honestly hoping for the sleep!
Last week, I was looking for some comfort about this whole process and God gave me this verse: "Call upon Me in the day of trouble. I will rescue you and you will glorify Me." So, following are some ways I plan to call upon the Lord specifically, anticipating His rescue and glorifying Him!
Once I realized how consumed I have been with pain management, I was able to think past that and better consider all the recent conversations with the doctors and nurses about this week. And that helped me pull some thoughts together that might help you great praying friends and family to pray more specifically.
1. Tomorrow morning, we'll have breakfast and walk over to the hospital. Sometime around 11, James should have a contrast study in radiology. They'll put barium in the top of his colon (his mucous fistula, a stoma on his belly). Best case: the study will be perfect, everything will look great and Dr. Parker will be excited about his plan for surgery. Worst case: There will be strictures which will make Dr. Parker concerned about the possibility of blockages created with surgery and he will decide not to do the surgery. If this happens, we will still stay on and Dr. Parker will use the surgery time to do a scope of the whole colon to see what is going on. Prayer requests: Best case, of course! And that we can keep James comfortable during the procedure.
2. Following the study, we admit James to the hospital. And begin flushing to clean everything out for surgery. (Go-litely, anyone?) Best case: We get a room right away and move in and settle. They are all ready to get started with the flushing and things fall into place. James stays comfortable with no cramping, but steadily cleaning out for surgery prep. Worst case: Not sure. Of course, I'd rather not go there!
3. Meet with pain team and nurses. Best case: We love everyone and they love us too... especially James. Continuity of care is as important to them as to us and we get the same nurse for a few days so they know James' baseline and we have trust and teamwork providing pain management for James following surgery. Worst case: Pain management was the WORST part of James initial ostomy surgery. No continuity of care. Nurses who refused to see James was in pain and didn't help. (Children with Down syndrome tend to present differently than typical children with pain and so it makes communication and treatment difficult.) Prayer request: James will also be on clears during this time. Pray we can keep him comfortable and occupied and have worthwhile clears for him to eat and drink!
4. Surgery some time on Wednesday. We do not currently know the surgery schedule. Best case: Surgery would happen early in the morning so we can make the most of the day scheduled pain management team's help and availability. Worst case:?
5. Pain management: This is my biggie...... and it's easy to get stuck on it... It is very important to me as I know it is hard to heal when everything hurts. And how hard it is to balance pain management and gut activity.
6. Tummy rumbles. We and the medical staff will be listening for tummy rumbles (which indicate things are moving and ready for at least clears). Sometimes, pain meds slow this process down. Best case: by day 2, 3 at the latest, James is ready to drink and eat clear liquids. and handles them well. Worst case: He isn't ready and things don't work right and he is 'dumping'--pray against dumping (where output exceeds input because the body isn't absorbing things like it should.) Also please pray things work so well, he doesn't need to use the feeding tube.
7. Ready for food. Best case: Things in step 6 work so well that by day 3-5 post-surgery, James is ready, willing and more than able to eat lighter foods (bananas, rice, applesauce, toast) and he tolerates them well and processes them properly.
8. Stooling. Best case: James demonstrates that things are working because things are coming out the right end, in the right form, amount and timing.
I think once 7 and 8 are in place, they will likely want to send James home, because they know that children do better at home than in the hospital. This just gives me a basic outline to share what I have picked up in conversations recently about 'what to expect'. We could conceivably go home as early as Sunday... more likely Monday or Tuesday of next week. If things don't go so well, we could go home Thursday (doubtful) or later than next Tuesday.
Tomorrow, I'll be able to ask more questions and hopefully be more specific. I plan to update on Facebook regularly (Friend: Stephanie Skelly for updates) and here when I need more room for details... or feel like I do).
If you are reading this Monday, please pray we can sleep tonight. And that James sleeps and doesn't try to sneak away. He got out the door of our room, to the elevator (right next door), pushed the down button and the elevator door was opening just as I got into the hall after realizing that he actually did get out the door when my back was turned. There is no 'hotel' style lock on the door. But I will move the chair over.
Thank you for your concern and prayers for us and James... To God Be the Glory!
He's already tried.
I realized on the drive up, that my mind has been mostly consumed with post-surgery pain management. That made it difficult to really think ahead and make a good plan and packing list. I'm feeling really inexperienced right now, but I suspect tomorrow will bring a flood of familiar memories. Sleep tonight will help, I'm sure. In the absence of sleep, meditating on Scripture will be a very good thing.
But I am honestly hoping for the sleep!
Last week, I was looking for some comfort about this whole process and God gave me this verse: "Call upon Me in the day of trouble. I will rescue you and you will glorify Me." So, following are some ways I plan to call upon the Lord specifically, anticipating His rescue and glorifying Him!
Once I realized how consumed I have been with pain management, I was able to think past that and better consider all the recent conversations with the doctors and nurses about this week. And that helped me pull some thoughts together that might help you great praying friends and family to pray more specifically.
1. Tomorrow morning, we'll have breakfast and walk over to the hospital. Sometime around 11, James should have a contrast study in radiology. They'll put barium in the top of his colon (his mucous fistula, a stoma on his belly). Best case: the study will be perfect, everything will look great and Dr. Parker will be excited about his plan for surgery. Worst case: There will be strictures which will make Dr. Parker concerned about the possibility of blockages created with surgery and he will decide not to do the surgery. If this happens, we will still stay on and Dr. Parker will use the surgery time to do a scope of the whole colon to see what is going on. Prayer requests: Best case, of course! And that we can keep James comfortable during the procedure.
2. Following the study, we admit James to the hospital. And begin flushing to clean everything out for surgery. (Go-litely, anyone?) Best case: We get a room right away and move in and settle. They are all ready to get started with the flushing and things fall into place. James stays comfortable with no cramping, but steadily cleaning out for surgery prep. Worst case: Not sure. Of course, I'd rather not go there!
3. Meet with pain team and nurses. Best case: We love everyone and they love us too... especially James. Continuity of care is as important to them as to us and we get the same nurse for a few days so they know James' baseline and we have trust and teamwork providing pain management for James following surgery. Worst case: Pain management was the WORST part of James initial ostomy surgery. No continuity of care. Nurses who refused to see James was in pain and didn't help. (Children with Down syndrome tend to present differently than typical children with pain and so it makes communication and treatment difficult.) Prayer request: James will also be on clears during this time. Pray we can keep him comfortable and occupied and have worthwhile clears for him to eat and drink!
4. Surgery some time on Wednesday. We do not currently know the surgery schedule. Best case: Surgery would happen early in the morning so we can make the most of the day scheduled pain management team's help and availability. Worst case:?
5. Pain management: This is my biggie...... and it's easy to get stuck on it... It is very important to me as I know it is hard to heal when everything hurts. And how hard it is to balance pain management and gut activity.
6. Tummy rumbles. We and the medical staff will be listening for tummy rumbles (which indicate things are moving and ready for at least clears). Sometimes, pain meds slow this process down. Best case: by day 2, 3 at the latest, James is ready to drink and eat clear liquids. and handles them well. Worst case: He isn't ready and things don't work right and he is 'dumping'--pray against dumping (where output exceeds input because the body isn't absorbing things like it should.) Also please pray things work so well, he doesn't need to use the feeding tube.
7. Ready for food. Best case: Things in step 6 work so well that by day 3-5 post-surgery, James is ready, willing and more than able to eat lighter foods (bananas, rice, applesauce, toast) and he tolerates them well and processes them properly.
8. Stooling. Best case: James demonstrates that things are working because things are coming out the right end, in the right form, amount and timing.
I think once 7 and 8 are in place, they will likely want to send James home, because they know that children do better at home than in the hospital. This just gives me a basic outline to share what I have picked up in conversations recently about 'what to expect'. We could conceivably go home as early as Sunday... more likely Monday or Tuesday of next week. If things don't go so well, we could go home Thursday (doubtful) or later than next Tuesday.
Tomorrow, I'll be able to ask more questions and hopefully be more specific. I plan to update on Facebook regularly (Friend: Stephanie Skelly for updates) and here when I need more room for details... or feel like I do).
If you are reading this Monday, please pray we can sleep tonight. And that James sleeps and doesn't try to sneak away. He got out the door of our room, to the elevator (right next door), pushed the down button and the elevator door was opening just as I got into the hall after realizing that he actually did get out the door when my back was turned. There is no 'hotel' style lock on the door. But I will move the chair over.
Thank you for your concern and prayers for us and James... To God Be the Glory!
Wednesday, April 28, 2010
James is learning to read!
We figured out YouTube and signed up for an account, so we could share this sweet video of James and Momma reading James' ABC book from Love and Learning.
Monday, January 11, 2010
So much to be thankful for
I took James to Atlanta to see the oncologist today. Katie and Carrie joined us and we had a good day.
When Dr. Keller came in the room, James walked over and shook his hand. Dr. Keller squatted down with his 'simply amazed' smile and just looked James over. Finally, he pronounced, "Wow. He is looking really good, isn't he?"
James' counts are really good. After being perpetually high through all but the first month of chemo, James' platelets are now a little below normal. His hemoglobin is hanging out around 12.5 and his new energy level shows it. His white blood counts are very good for James... just a little below normal for the rest of us, but good for James with Down syndrome. The rash on his face is so much better. The skin looks tender (and maybe a bit dry), but the nasty bump part of the rash appears to be gone. (PTL!) If I haven't already say so, James is supposed to be seen by the oncology team once a month until October (at which point we'll go every other month, weaning us all to the point of our last visit at five years from the end of treatment....all Lord willing, of course.)
I asked Dr. Keller what he thinks is in James' future from his perspective--not looking for promises, just wondering what he sees from his point of view. He said he is very optimistic about James' prognosis. He says the largest group of children that relapse do so during treatment. The next largest relapse group does so within the first three years--James will hit his own three-year mark in March of this year. Once you reach the three year mark, the relapse rate levels out and things look pretty good. Of course, these are only statistics and if you happen to fall on the unlikely end of the statistics, it's a 100% deal. So, for now, we are glad to know that statistically speaking, James is doing very well. But we are ever mindful that there are no promises and our comfort comes from knowing the Master Planner... not from the statistics.
Dr. Keller said that from a leukemia perspective, there is really no reason to delay repairing James' ostomy.
I was able to talk to James' surgeon today too. He was encouraged by our progress with flushes and said we could move to the next step--(WARNING: TMI alert, sensitive folks may want to skip to the next paragraph) we'll be taking his ostomy output and putting it into his mucous fistula--the top of his colon--so he can try to process it like we do. We'll start small to see how he tolerates it, but the ultimate goal is to put EVERYTHING that comes out of his ostomy through his colon to make sure it will work when we put it back together (Lord willing). There really is no test that can show us that James' colon his alive and healthy and ready to do the work it was designed to do. His body has endured nearly three years of chemo, His colon has been idle for 2.5 years. The only way to make sure it will work is to use it. I am just so thankful for a surgeon with the foresight to put the top of James' colon in a place that we could test it out. Apparently they don't all think to do that, but ours did.
We have seen a lot of improvement in James since we finished chemo. He is getting in to more and dancing more. His energy levels are much higher than they were during chemo. He is trying more sounds and saying more (though he still doesn't speak fully or clearly, he has expanded his repertoire of vowels. I love to hear him say, "Uh....Oh!" He is expanding his food horizons too and, while he still has his favorite stand-bys, he is trying and liking more different foods all the time. Over Christmas, Hannah took James and the little girls to some neighbors to borrow some movies. While the rest visited, James invited himself to climb their stairs and visit their big boys' bedrooms!
We continue to appreciate the prayers of so many and are grateful for your investment in our family. We still have lots to ask God for as we move along in James' healing. We need wisdom and resources to accomplish this next step in preparing James for his ostomy repair, and we need God's hand of blessing on James and our efforts to help him.
When Dr. Keller came in the room, James walked over and shook his hand. Dr. Keller squatted down with his 'simply amazed' smile and just looked James over. Finally, he pronounced, "Wow. He is looking really good, isn't he?"
James' counts are really good. After being perpetually high through all but the first month of chemo, James' platelets are now a little below normal. His hemoglobin is hanging out around 12.5 and his new energy level shows it. His white blood counts are very good for James... just a little below normal for the rest of us, but good for James with Down syndrome. The rash on his face is so much better. The skin looks tender (and maybe a bit dry), but the nasty bump part of the rash appears to be gone. (PTL!) If I haven't already say so, James is supposed to be seen by the oncology team once a month until October (at which point we'll go every other month, weaning us all to the point of our last visit at five years from the end of treatment....all Lord willing, of course.)
I asked Dr. Keller what he thinks is in James' future from his perspective--not looking for promises, just wondering what he sees from his point of view. He said he is very optimistic about James' prognosis. He says the largest group of children that relapse do so during treatment. The next largest relapse group does so within the first three years--James will hit his own three-year mark in March of this year. Once you reach the three year mark, the relapse rate levels out and things look pretty good. Of course, these are only statistics and if you happen to fall on the unlikely end of the statistics, it's a 100% deal. So, for now, we are glad to know that statistically speaking, James is doing very well. But we are ever mindful that there are no promises and our comfort comes from knowing the Master Planner... not from the statistics.
Dr. Keller said that from a leukemia perspective, there is really no reason to delay repairing James' ostomy.
I was able to talk to James' surgeon today too. He was encouraged by our progress with flushes and said we could move to the next step--(WARNING: TMI alert, sensitive folks may want to skip to the next paragraph) we'll be taking his ostomy output and putting it into his mucous fistula--the top of his colon--so he can try to process it like we do. We'll start small to see how he tolerates it, but the ultimate goal is to put EVERYTHING that comes out of his ostomy through his colon to make sure it will work when we put it back together (Lord willing). There really is no test that can show us that James' colon his alive and healthy and ready to do the work it was designed to do. His body has endured nearly three years of chemo, His colon has been idle for 2.5 years. The only way to make sure it will work is to use it. I am just so thankful for a surgeon with the foresight to put the top of James' colon in a place that we could test it out. Apparently they don't all think to do that, but ours did.
We have seen a lot of improvement in James since we finished chemo. He is getting in to more and dancing more. His energy levels are much higher than they were during chemo. He is trying more sounds and saying more (though he still doesn't speak fully or clearly, he has expanded his repertoire of vowels. I love to hear him say, "Uh....Oh!" He is expanding his food horizons too and, while he still has his favorite stand-bys, he is trying and liking more different foods all the time. Over Christmas, Hannah took James and the little girls to some neighbors to borrow some movies. While the rest visited, James invited himself to climb their stairs and visit their big boys' bedrooms!
We continue to appreciate the prayers of so many and are grateful for your investment in our family. We still have lots to ask God for as we move along in James' healing. We need wisdom and resources to accomplish this next step in preparing James for his ostomy repair, and we need God's hand of blessing on James and our efforts to help him.
Saturday, December 19, 2009
Those birthday photos...
James had a great birthday. He has a couple of little travel pillows that his Nona, my mom, made custom cases for. We tote them EVERYwhere. They go in the car, to appointments, and for diaper changes/bag emptyings. They make his life much more comfy.
So this year, he graduated to the next up size pillow... not quite full size, but still very portable.
And with PIGS... and farm stuff on the new custom cases!
So this year, he graduated to the next up size pillow... not quite full size, but still very portable.
And with PIGS... and farm stuff on the new custom cases!
For a long time during treatment, chocolate ice cream was a mainstay for James. Then we tried to cut back on sugar and sweetners because he was having trouble with yeast overgrowth. It had actually been a good while since he had had or asked for ice cream when we asked James what he wanted for his birthday dessert.
And James signed, "ice cream." Loud and clear.
So, Hannah made ice cream towers.
We pretty sure he liked them.
Wednesday, December 9, 2009
Saturday, October 24, 2009
969 days later
Edited: James' off treatment pictures weren't showing up for some reason. Hopefully it's fixed and y'all can see Mr. Handsome. If not please leave a comment and we'll try to figure out what's going on. Thanks, Hannah
On February 25th, 2007, Momma posted that for some reason, she had this feeling that we had several more big weeks ahead of us. And she was right. Though, none of us would have thought it would have turned out this way. Those several big weeks turned into 2 years and 8 months!
But yesterday, James took his very last chemotherapy pill at 7:10pm and is now officially OFF TREATMENT! In a way, I am so thrilled, for James, and me and our family. But it brings more unknowns... and unknowns are.... well, unknown. But not for God and that is full of comfort. Before we close the chapter on leukemia, I would like to share some pictures of James before, during and after treatment. GO JAMES!!!
***************************************************************************************
On February 25th, 2007, Momma posted that for some reason, she had this feeling that we had several more big weeks ahead of us. And she was right. Though, none of us would have thought it would have turned out this way. Those several big weeks turned into 2 years and 8 months!
But yesterday, James took his very last chemotherapy pill at 7:10pm and is now officially OFF TREATMENT! In a way, I am so thrilled, for James, and me and our family. But it brings more unknowns... and unknowns are.... well, unknown. But not for God and that is full of comfort. Before we close the chapter on leukemia, I would like to share some pictures of James before, during and after treatment. GO JAMES!!!
***************************************************************************************
Before leukemia and with hair....
(January 2006)
During Treatment
(March 2007)
(May 2007)
(December 2007)
(May 2008)
(August 2008)
(September 2008)
(February 2009)
(September 2009)
And now.... Officially OFF TREATMENT
(January 2006)During Treatment
(March 2007) (May 2007)
(August 2008)
(September 2008)
(February 2009)
(September 2009)
And now.... Officially OFF TREATMENT
|
As I put this 'in review' post together I saw so many other pictures I would love to have shared with you. If you want to see more pictures and to read James' journey through treatment, the best place to start is in February of 2007 and then finish up here.
Saturday, February 14, 2009
The Lone (St)ranger
James got a toy gun, holster, cowboy hat and mask for Christmas (the children got together with Daddy to make this work).. Becca donated one of her bandanas. The pony came from neighbors awhile back. Then he would only sit on the horse if it were inside a large box. Now he'll climb on the horse to watch his favorite cowboy shows.
For Christmas, the little three got a wagon. James is learning to pull it around. Becca is helping him out.
Notice the shorts, short-sleeved shirt and sock-free outfits... This is December. It did get colder in January.
Notice the shorts, short-sleeved shirt and sock-free outfits... This is December. It did get colder in January.
Love, Stephanie
Tuesday, September 23, 2008
James' ears
On Monday, James had a minor surgical procedure to insert tubes into he ears.
He has never had an ear infection, but his new ENT doctor said he had fluid behind his ears and that is never a good thing for someone with hearing loss.
As James' pediatrician said at his pre-op exam last week, "There really isn't any minor surgery." Of course that has to do with anesthesia. James is always considered a special case because of his Down syndrome. He has never had any unusual trouble with anesthesia, for which we are grateful.
Even with so-called minor procedures, we lose at least three days. One for all the pre-op appointments, a day for the surgery--because getting up early and going under anesthesia will wipe out a boy, his sister and his mom..and make a boy really needy--and another day for the post-op/follow-up stuff.
I'm not complaining. I'm just saying.
Today, James is pretty much back to normal. I think he is already hearing just a tad better. Next week we go for followup appointments and hopefully for new hearing aid molds and a hearing test.
He has never had an ear infection, but his new ENT doctor said he had fluid behind his ears and that is never a good thing for someone with hearing loss.
As James' pediatrician said at his pre-op exam last week, "There really isn't any minor surgery." Of course that has to do with anesthesia. James is always considered a special case because of his Down syndrome. He has never had any unusual trouble with anesthesia, for which we are grateful.
Even with so-called minor procedures, we lose at least three days. One for all the pre-op appointments, a day for the surgery--because getting up early and going under anesthesia will wipe out a boy, his sister and his mom..and make a boy really needy--and another day for the post-op/follow-up stuff.
I'm not complaining. I'm just saying.
Today, James is pretty much back to normal. I think he is already hearing just a tad better. Next week we go for followup appointments and hopefully for new hearing aid molds and a hearing test.
Monday, September 22, 2008
War movies
In an earlier post, I mentioned that we like to watch Hopalong Cassidy.
The children are also fond of some of the olderwar movies too. Like Sergeant York and some of the Errol Flynn movies.
I love that little boy...and his brother and sisters too!
Friday, August 29, 2008
Lookout Hoppy!
The children are big fans of Hopalong Cassidy. James loves to imitate him and the rest of the children (especially Owen, Becca and Carrie) love to play along. Mrs. Julie brought these toy guns--she works at Salvation Army and when toy guns are donated, they can't sell them. (No, I don't know if that is just their store or if it is a nationwide policy).
At any rate, the photos below are of Hoppy-inspired activities around here recently.
Friday, August 8, 2008
Lost
Last week, James dropped my cell phone into a cup of water. It didn't make it. He bought me a new one, but I have lost all my phone numbers.
One of my new projects is to work on recreating a paper copy of my phone list. I have been surprised how lost I have felt without my phone and programmed phone numbers.
One of my new projects is to work on recreating a paper copy of my phone list. I have been surprised how lost I have felt without my phone and programmed phone numbers.
Thursday, August 7, 2008
Groanings too deep for words
In the evening, we generally have a time of family fellowship and worship. We sing--usually hymns--we share stories, read a chapter of the Bible and answer questions (right now we are working through _Balancing the Sword_), share more thoughts and stories and then we pray together. Most of the time, Vern prays. Some of the time we 'pray around' and everyone has a turn.
Tonight, we prayed around and James decided he wanted a turn. He was sitting on the couch beside me and he folded himself over, as only James can, into a sort of seated prostrate position. And he prayed. "Mmmmm." "Mm mmm." "Mmm mmm." We all smiled at each other and yet we were respectful of James praying, so it was a quick smile and we kept our heads bowed. When James sat up and looked at Katie, we thought he was done. So, Katie started to pray. Then James signed to stop and he folded himself over again, and prayed.
"Mmmmm." "Mm mmm mmmm." " Mmmmm mm mmmm mmmmm." "Mmmm." [Giggle, giggle] "Mmmm mmm mmmm." [Chortle, snort, giggle] "Mm mmm mmmm mm." [Giggle, chuckle, chortle, snort] "Mmm mmmm mmmm." "Mmm mm mmmm." [Chortle, snort, chortle, giggle, giggle... stern looks from Daddy... deep breaths] "Mmm mmm mmm."
Then James sat up again. He looked at Katie, who was waiting patiently. We each took turns coaching James to sign to Katie that it was her turn. When Katie signed and said, "Your turn", James apparently misunderstood it was what he was supposed to say to her and he folded himself over again and "Mmmm....."
[Bbbwwwaaaah ha ha ha haaaaa.]
Tonight, we prayed around and James decided he wanted a turn. He was sitting on the couch beside me and he folded himself over, as only James can, into a sort of seated prostrate position. And he prayed. "Mmmmm." "Mm mmm." "Mmm mmm." We all smiled at each other and yet we were respectful of James praying, so it was a quick smile and we kept our heads bowed. When James sat up and looked at Katie, we thought he was done. So, Katie started to pray. Then James signed to stop and he folded himself over again, and prayed.
"Mmmmm." "Mm mmm mmmm." " Mmmmm mm mmmm mmmmm." "Mmmm." [Giggle, giggle] "Mmmm mmm mmmm." [Chortle, snort, giggle] "Mm mmm mmmm mm." [Giggle, chuckle, chortle, snort] "Mmm mmmm mmmm." "Mmm mm mmmm." [Chortle, snort, chortle, giggle, giggle... stern looks from Daddy... deep breaths] "Mmm mmm mmm."
Then James sat up again. He looked at Katie, who was waiting patiently. We each took turns coaching James to sign to Katie that it was her turn. When Katie signed and said, "Your turn", James apparently misunderstood it was what he was supposed to say to her and he folded himself over again and "Mmmm....."
[Bbbwwwaaaah ha ha ha haaaaa.]
Friday, June 27, 2008
Grateful
We have had a very busy and blessed month this June. We have so many BIG things to be grateful for in addition to all the little, everyday things.
James...
...continues to do well. His counts continue to be good, but not too good, and the side effects from his chemo seem to be relatively minimal. Developmentally, he is moving along in a number of ways. He LOVES to help and he seems to really like order (not that he is always orderly, but he seems to prefer things to be more orderly rather that more chaotic!). His two favorite things to help with are laundry and emptying the dishwasher. He is really good at putting away the serving forks and spoons and the forks and knives. He does get confused with the spoons. We think this is because there are two places for spoons--they are separated by teaspoons and soup spoons--and he doesn't yet have a concept of the difference between 'big' spoons and 'little' spoons. He also likes to help put laundry into the washer (it's a front loader--yes, we really like it) and to take it out and put it in a basket to go out to the clothesline.
A few days ago, I was working in the livingroom and needed something from the diningroom. I was on my knees on the floor, so I looked around to see who was close by that could bring me what I needed with less effort than would be required to get up and get it myself (in other words, I was being lazy). James was the only child nearby and I was so glad to see a positive teaching opportunity! (then I didn't feel so bad about being lazy). I told James what I needed and asked him if he could get it for me. He said, "Mm," with a quick nod and swaggered off with purpose. He went straight for the item in need, picked up and swaggered back, delivering it with a definite pride and sense of purpose! I was tickled. He never ceases to amaze and he is such a delight to watch. I love to see him discover things that I wondered if he would ever do or notice.
The Homestead
During the past month, my dad offered to contribute enough to allow us to purchase the siding for the outside of our house (it has been wrapped in various brands of 'Tyvek-type' paper). It wasn't long before the siding was delivered and a local friend/builder sent his crew over to get the first side of the house finished (our friend and my dad have both been concerned about this 'weather' side of the house not being finished). Vern and Owen worked along with David's crew and learned a great deal. They have been able to finish the front porch (it looks GREAT!) They plan to keep working their way around the house doing all they can to get all the siding up. Having siding makes a very pleasant difference in the way the house looks. We are very grateful!
Not long after the siding got started, it was time to slaughter chickens. It's not the prettiest homesteading event of the year, but it is worth it! We really like knowing where and how our food was grown and processed.
Friends came to help and to learn and we were so very grateful they did. We got an early start to the morning and about 2-1/2 hours into the day, Vern sliced his finger sharpening his already-quite-sharp filet knife. It was a pretty deep cut. I had the worst time looking at it. With all we have been through with James, I thought perhaps I could handle it, but, alas, I have not arrived. Once I finally scraped myself up off the bed (thankfully, I didn't hit the floor, though it was close), we decided that we could leave Phillip in charge, with all the children helping and I would take Vern to the Urgent Care clinic. We tried to get into a doctor's office, but no one had space and we considered the ER as well.
The rest of the helpers and learners arrived while we were gone and everyone dove in to help. Vern was out of commission for the rest of the day (with four stitches, and instructions not to get his finger--left index) wet. We had planned to do a record 150 chickens and there was no way we could have made it without all the help! It was a longer day than we had hoped, but ended up being an immersion experience. We are very grateful to have friends who stick by us in a crisis!
My aunt lives just down the road from my mom, about 3 hours north of here. She and her husband have lived the rural life for some 40 years or so and there place is an inspiration. My aunt and my mom are both great with landscaping and if that talent is passed along genetically, you would never know it by looking at the yards we have had over the years. My aunt realized that she very much needed to divide some of her many plants this year and she was planning to toss the divisions into the woods, until she thought of me! (Hallelujah!) She mentioned her intentions of dividing plants to my mom and wondered if I could use them. My mom offered to provide all the 'filler' to complete the project and she provided lattice to provide the 'backdrop' under the front porch, some of the more 'evergreen' shrubs, soaker hose to make watering MUCH easier, some supplemental dirt and pine straw for mulch.
Then they dug up everything, loaded up my aunt's SUV (to the point that my uncle teased that it looked like the lead car in a funeral procession) and drove down to our place. They arrived Wed afternoon, emptied the car and arranged the plants. Early Thursday morning we set to work in the shade and for nearly three and a half hours we dug, planted, watered and mulched. We were all pretty excited to see the transformation and are glad to have some green life in front of the house. Now I have to take really good care of it all (green thumb that I am not). If I pass this test, they said they would bring more cuttings, divisions and volunteers in the Fall!) I am hopeful that they have made it easy enough for me to be successful!
Lord willing, I have the beginnings of a heritage here that I can pass along to my children when they begin their homes. I am grateful for the heritage of beauty I have and for a very thoughtful and generous mom and aunt.
Love, Stephanie
James...
...continues to do well. His counts continue to be good, but not too good, and the side effects from his chemo seem to be relatively minimal. Developmentally, he is moving along in a number of ways. He LOVES to help and he seems to really like order (not that he is always orderly, but he seems to prefer things to be more orderly rather that more chaotic!). His two favorite things to help with are laundry and emptying the dishwasher. He is really good at putting away the serving forks and spoons and the forks and knives. He does get confused with the spoons. We think this is because there are two places for spoons--they are separated by teaspoons and soup spoons--and he doesn't yet have a concept of the difference between 'big' spoons and 'little' spoons. He also likes to help put laundry into the washer (it's a front loader--yes, we really like it) and to take it out and put it in a basket to go out to the clothesline.
A few days ago, I was working in the livingroom and needed something from the diningroom. I was on my knees on the floor, so I looked around to see who was close by that could bring me what I needed with less effort than would be required to get up and get it myself (in other words, I was being lazy). James was the only child nearby and I was so glad to see a positive teaching opportunity! (then I didn't feel so bad about being lazy). I told James what I needed and asked him if he could get it for me. He said, "Mm," with a quick nod and swaggered off with purpose. He went straight for the item in need, picked up and swaggered back, delivering it with a definite pride and sense of purpose! I was tickled. He never ceases to amaze and he is such a delight to watch. I love to see him discover things that I wondered if he would ever do or notice.
The Homestead
During the past month, my dad offered to contribute enough to allow us to purchase the siding for the outside of our house (it has been wrapped in various brands of 'Tyvek-type' paper). It wasn't long before the siding was delivered and a local friend/builder sent his crew over to get the first side of the house finished (our friend and my dad have both been concerned about this 'weather' side of the house not being finished). Vern and Owen worked along with David's crew and learned a great deal. They have been able to finish the front porch (it looks GREAT!) They plan to keep working their way around the house doing all they can to get all the siding up. Having siding makes a very pleasant difference in the way the house looks. We are very grateful!
Not long after the siding got started, it was time to slaughter chickens. It's not the prettiest homesteading event of the year, but it is worth it! We really like knowing where and how our food was grown and processed.
Friends came to help and to learn and we were so very grateful they did. We got an early start to the morning and about 2-1/2 hours into the day, Vern sliced his finger sharpening his already-quite-sharp filet knife. It was a pretty deep cut. I had the worst time looking at it. With all we have been through with James, I thought perhaps I could handle it, but, alas, I have not arrived. Once I finally scraped myself up off the bed (thankfully, I didn't hit the floor, though it was close), we decided that we could leave Phillip in charge, with all the children helping and I would take Vern to the Urgent Care clinic. We tried to get into a doctor's office, but no one had space and we considered the ER as well.
The rest of the helpers and learners arrived while we were gone and everyone dove in to help. Vern was out of commission for the rest of the day (with four stitches, and instructions not to get his finger--left index) wet. We had planned to do a record 150 chickens and there was no way we could have made it without all the help! It was a longer day than we had hoped, but ended up being an immersion experience. We are very grateful to have friends who stick by us in a crisis!
My aunt lives just down the road from my mom, about 3 hours north of here. She and her husband have lived the rural life for some 40 years or so and there place is an inspiration. My aunt and my mom are both great with landscaping and if that talent is passed along genetically, you would never know it by looking at the yards we have had over the years. My aunt realized that she very much needed to divide some of her many plants this year and she was planning to toss the divisions into the woods, until she thought of me! (Hallelujah!) She mentioned her intentions of dividing plants to my mom and wondered if I could use them. My mom offered to provide all the 'filler' to complete the project and she provided lattice to provide the 'backdrop' under the front porch, some of the more 'evergreen' shrubs, soaker hose to make watering MUCH easier, some supplemental dirt and pine straw for mulch.
Then they dug up everything, loaded up my aunt's SUV (to the point that my uncle teased that it looked like the lead car in a funeral procession) and drove down to our place. They arrived Wed afternoon, emptied the car and arranged the plants. Early Thursday morning we set to work in the shade and for nearly three and a half hours we dug, planted, watered and mulched. We were all pretty excited to see the transformation and are glad to have some green life in front of the house. Now I have to take really good care of it all (green thumb that I am not). If I pass this test, they said they would bring more cuttings, divisions and volunteers in the Fall!) I am hopeful that they have made it easy enough for me to be successful!
Lord willing, I have the beginnings of a heritage here that I can pass along to my children when they begin their homes. I am grateful for the heritage of beauty I have and for a very thoughtful and generous mom and aunt.
Love, Stephanie
Monday, February 25, 2008
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!
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
Friday, February 22, 2008
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
Friday, February 8, 2008
Flashes of hope
"Flashes of Hope is a non-profit organization dedicated to creating powerful, uplifting portraits of children fighting cancer and other life-threatening illnesses."
We were privileged to have a Flashes of Hope photo shoot in December during our clinic visit. It was a real surprise, last-minute thing as they were just wrapping up and we didn't know they were going to be there that day--they're usually there on Mondays, and only every other month.
Yesterday, during our clinic visit, we received our Flashes of Hope package. It included a leather folio with two 8x10s, 11 proofs and a CD with the 11 photos on it. We share copyright privileges for the photos--which essentially means that as long as we don't use them for personal gain, we can post them on the internet and make copies.
We are uplifted by these portraits of our courageous, conquering hero, James. We hope you are too!
Love, Stephanie
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