Who says one can't have chocolate cake or cupcakes on a gluten, dairy, and processed sugar free diet. We think these taste just like their gluten containing counterparts! :*)
Tuesday, December 14, 2010
Friday, October 29, 2010
What a little girl wants...
When I was a little girl, one of my biggest desires was to have a dollhouse. And then, one year I did get one! It was a large dollhouse and it came with lots of little wood parts to make it. Daddy and I set up one of the bedrooms to be able to work on it, without little ones touching it. We were only able to glue the first and second floorboards together, before James was born and we needed that bedroom.
Momma and I looked online on that day to see if we could find some dollhouse furniture that would go with it. I distinctly remember seeing a nursery set, with a cradle, crib, rocking chair and a rocking horse. I loved seeing the different sets, but didn't ever get any and finally lost track of the site with the sets. Recently, I came across another site and they carried the same sets I remember seeing a long time ago. I didn't see any on the site, but it would be great to see drop leaf tables for a dollhouse. I could think of many different uses for a mini drop leaf table, but the primary one would be that it wouldn't take up a lot of room. :)
Katie, Owen and I have been talking about seeing if we can put together my dollhouse and that means I will look into getting some furniture and finishing up some dolls Katie and I started when we were about 7 and 5 years old. I really hope we do, because I still like dollhouses. And decorating them too!
CSN Stores sells drop leaf tables, dollhouse furniture and an amazing selection of dollhouses, if you don't have one yet. ~Sponsored
Thursday, July 15, 2010
I kissed shampoo (and conditioner) good-bye!
(with apologies to Josh Harris)
If you don't already think I am nuts, you probably will soon.
I gave up shampoo. And conditioner. I haven't bought any for myself in over three months. And it is summer in Georgia.
I had read a number of things about shampoo and conditioner replacements and about how toxic commercial hair care products can be. And I thought I should do something. BUT, I live in Georgia, for goodness sake, and people SWEAT here. AND I have frizzy curly hair. HOW would I EVER make it without CONDITIONER. I was sure I would be one big, permanent, oily frizz ball.
Then my friend, Millie, mentioned her no 'poo method. And that she has frizzy hair--or did, before she kissed shampoo and conditioner good-bye. And I was convinced that I at least needed to give this a chance.
So, I took my empty tight-wad, unhealthy shampoo and conditioner bottles and rinse them with warm to hot water until I was sure nothing was left.
I filled my shampoo bottle 1/8th full of baking soda, added warm water, replaced the squirt top and shook to dissolve the soda. (Some like to add some essential oil or herbs for fragrance, but the next step makes that moot for me, so I just do the soda and water).
I filled my conditioner bottle 1/3 full of real apple cider vinegar, then added water to fill. No need to shake, but be sure to put the squirt top back on. It will be handy in the shower.
When I shower, I wash my face and neck first, especially if I've been doing 'dirty work'. Then I squirt the Soda wash all over my head and hair. I rub in around in my scalp with my fingertips, just like it was shampoo. Some say it sort of suds for them. I haven't seen or felt any suds. I wash down my hair with my fingers and then rinse... rubbing with my fingertips. The AMAZING thing is that my hair squeaks! and feels clean. One time, after a particular sweaty and dirty garden work day, I had to wash a second time. I knew this because after rinsing, my hair didn't have the squeaky clean feel like it should.
After rinsing the wash out, I squirt the hair rinse (water and vinegar) all over my hair. You don't want this in your eyes! I rub it around in my hair and then let it sit while I wash up and do whatever I need to do! When I am all done washing up, I rinse my hair thoroughly.
Only one time did I think I smelled like vinegar, but Vern said he didn't smell it.
My hair is softer than it's ever been. I can actually brush through it, which I usually cannot do because it is so thick, coarse and frizzy.
I always have baking soda and apple cider vinegar on hand, so it is easy to make up... and it is very inexpensive. I'm also confident that I'm not adding any extra toxins to my body.
Now if I can just win over the rest of the family!
(Notes: I did read somewhere that if you use henna, the vinegar is not compatible with that.)
Do you have any budget-friendly, natural ingredient recipes for hair care products that can be made at home?
If you don't already think I am nuts, you probably will soon.
I gave up shampoo. And conditioner. I haven't bought any for myself in over three months. And it is summer in Georgia.
I had read a number of things about shampoo and conditioner replacements and about how toxic commercial hair care products can be. And I thought I should do something. BUT, I live in Georgia, for goodness sake, and people SWEAT here. AND I have frizzy curly hair. HOW would I EVER make it without CONDITIONER. I was sure I would be one big, permanent, oily frizz ball.
Then my friend, Millie, mentioned her no 'poo method. And that she has frizzy hair--or did, before she kissed shampoo and conditioner good-bye. And I was convinced that I at least needed to give this a chance.
So, I took my empty tight-wad, unhealthy shampoo and conditioner bottles and rinse them with warm to hot water until I was sure nothing was left.
I filled my shampoo bottle 1/8th full of baking soda, added warm water, replaced the squirt top and shook to dissolve the soda. (Some like to add some essential oil or herbs for fragrance, but the next step makes that moot for me, so I just do the soda and water).
I filled my conditioner bottle 1/3 full of real apple cider vinegar, then added water to fill. No need to shake, but be sure to put the squirt top back on. It will be handy in the shower.
When I shower, I wash my face and neck first, especially if I've been doing 'dirty work'. Then I squirt the Soda wash all over my head and hair. I rub in around in my scalp with my fingertips, just like it was shampoo. Some say it sort of suds for them. I haven't seen or felt any suds. I wash down my hair with my fingers and then rinse... rubbing with my fingertips. The AMAZING thing is that my hair squeaks! and feels clean. One time, after a particular sweaty and dirty garden work day, I had to wash a second time. I knew this because after rinsing, my hair didn't have the squeaky clean feel like it should.
After rinsing the wash out, I squirt the hair rinse (water and vinegar) all over my hair. You don't want this in your eyes! I rub it around in my hair and then let it sit while I wash up and do whatever I need to do! When I am all done washing up, I rinse my hair thoroughly.
Only one time did I think I smelled like vinegar, but Vern said he didn't smell it.
My hair is softer than it's ever been. I can actually brush through it, which I usually cannot do because it is so thick, coarse and frizzy.
I always have baking soda and apple cider vinegar on hand, so it is easy to make up... and it is very inexpensive. I'm also confident that I'm not adding any extra toxins to my body.
Now if I can just win over the rest of the family!
(Notes: I did read somewhere that if you use henna, the vinegar is not compatible with that.)
Do you have any budget-friendly, natural ingredient recipes for hair care products that can be made at home?
Thursday, July 8, 2010
Fantastic!
Today we visited Dr. P, James' surgeon, for James' post-surgery visit.
Dr. Parker came into the room and looked at James (almost like Dr. Keller does). Then, he smiled... and said, "Fantastic." "He looks fantastic!" Then he asked me when his surgery was and had it really only been five weeks? And again, he said, "He really looks fantastic.".. So... I think we know what Dr. P thinks! :*)
He asked a number of questions about how things have been going then he, umm, examined James. Which James was none-too-happy about. He couldn't get over how well James was doing this soon after surgery. And he said that bodes well for a full recovery, BUT :*), he said we still need to be on the lookout for signs of things gone awry for the next 6 months or so.
I asked about James' g-tube and we are tentatively aiming for October or November to close that up... He said it might be Day surgery, but could be overnight, depending. Gotta love a surgeon who doesn't make any promises! I mean that in the nicest way, since really, most things are not their promises to make!
As we headed home, I was mindful that it is not due to anything that we have or have not done, that the Lord has spared our James (whether for now or for the long term, we don't know, of course) and taken other children. I am grateful He is worthy of my trust, no matter what my circumstances. It isn't my circumstances, or James', that determines who I am, or my value (or yours either), it is that God loves us so much, that He sent Jesus to die for us (not collectively, but individually) so that we may be reconciled to Him. And He will pursue us however He needs to, to give us the opportunity of receiving that gift.
And that is humbling... in a very wonderful kind of a way.
Thank you for your prayers for us!
Dr. Parker came into the room and looked at James (almost like Dr. Keller does). Then, he smiled... and said, "Fantastic." "He looks fantastic!" Then he asked me when his surgery was and had it really only been five weeks? And again, he said, "He really looks fantastic.".. So... I think we know what Dr. P thinks! :*)
He asked a number of questions about how things have been going then he, umm, examined James. Which James was none-too-happy about. He couldn't get over how well James was doing this soon after surgery. And he said that bodes well for a full recovery, BUT :*), he said we still need to be on the lookout for signs of things gone awry for the next 6 months or so.
I asked about James' g-tube and we are tentatively aiming for October or November to close that up... He said it might be Day surgery, but could be overnight, depending. Gotta love a surgeon who doesn't make any promises! I mean that in the nicest way, since really, most things are not their promises to make!
As we headed home, I was mindful that it is not due to anything that we have or have not done, that the Lord has spared our James (whether for now or for the long term, we don't know, of course) and taken other children. I am grateful He is worthy of my trust, no matter what my circumstances. It isn't my circumstances, or James', that determines who I am, or my value (or yours either), it is that God loves us so much, that He sent Jesus to die for us (not collectively, but individually) so that we may be reconciled to Him. And He will pursue us however He needs to, to give us the opportunity of receiving that gift.
And that is humbling... in a very wonderful kind of a way.
Thank you for your prayers for us!
Friday, June 25, 2010
An herbal giveaway
Much to the chagrin of the doctors who work with James, and think that my daughter, Hannah, should go to medical school (or, at the very least, nursing school), Hannah would rather take a class about herbs... and maybe be an herbalist.
This giveaway could help her move in that direction!
This giveaway could help her move in that direction!
Thursday, June 3, 2010
Happy times
I think the hardest part for me this surgery (besides praying and wondering about pain management) was the fact that James was doing so great before surgery. It is not so difficult to hand your baby over to the surgeon when you know his life depends on it... and he looks like he is depending on you to help him.
It's a little different when he looks the best he has in five years... and you're sending him anyway.
I believe it won't be long until James is back up to full speed and, since pain management has not been the nightmare this time that it has been in the past, I really have no regrets. Already his little belly looks more like that of a little boy and less like that of a war-torn veteran. That is certainly something to be grateful for... and I am!
I am also grateful for some sweet time yesterday. Just about the time I was wondering if this was our day of trouble since James had gone so long without food or drink, the Big Apple Circus clowns that are permanently assigned here showed up. They occupied James for about 45 minutes and I think they had just as much fun as we did!
If you want to see MORE pictures you can go here!
It's a little different when he looks the best he has in five years... and you're sending him anyway.
I believe it won't be long until James is back up to full speed and, since pain management has not been the nightmare this time that it has been in the past, I really have no regrets. Already his little belly looks more like that of a little boy and less like that of a war-torn veteran. That is certainly something to be grateful for... and I am!
I am also grateful for some sweet time yesterday. Just about the time I was wondering if this was our day of trouble since James had gone so long without food or drink, the Big Apple Circus clowns that are permanently assigned here showed up. They occupied James for about 45 minutes and I think they had just as much fun as we did!
If you want to see MORE pictures you can go here!
Preparing for the best
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!
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!
Tuesday, June 1, 2010
Rescued!
It has been a good day. Thanks for your prayers and encouraging notes!
This morning we were able to have a 'homemade' breakfast at the Ronald McDonald house. They have an incredible kitchen set up, which gives us a lot of flexibility. What a huge blessing!
After breakfast, we headed over to the hospital. We decided to drive since we had things we would need to unload from the car. Tomorrow, I'm hoping to walk! We registered right away and visited radiology. The radiologist thought James' colon looked like it had grown some in the last several months, but the rest of his intestines 'looked pretty small'. I forgot to ask if there were any signs of blockage. Quietly I called out to the Lord, that He would rescue James and make a way for surgery... and that it would work.
Getting admitted to the hospital and getting to our room all worked pretty simply. Unfortunately, the emergency room here was very overloaded and the surgery resident and intern didn't have the order for James' bowel prep in by 6 p.m.! About 5:30 (I hadn't realized how time had passed), the nurse commented that if we didn't get the order soon, surgery might have to be moved from Wednesday! Well, that lit a fire under me and I started to make phone calls. Then I realized the surgeon's office was closed for the day! Yikes! I called the Nurse Practitioner we have worked with and left a voice mail. I started to call the answering service for the surgeon and then realized that if I answered the questions wrong, or the wrong surgeon was on call, I would get no help at all... "Oh Lord, here I am in my day of trouble! You promised if I called out to you, you would rescue me!" Just as I finished praying, my faith for this was so small, I had no idea how the Lord would work this one out. Just long enough to see my ugly doubt, and there was a knock at the door. Dr. Parker popped in... looking like he was fresh from vacation (he did just have an almost 4-day weekend!). Just in time, he got the orders in place, answered my main questions and chastised the intern and resident for not calling him and getting the orders in place. Thankfully, no harm was done to James and hopefully someone learned a valuable lesson!
Just another hour and a half of go-lytlely (they'll turn it off at midnight) and then he just needs to sleep for the night. They had hoped to be done by 9 p.m., but this gives James a little longer for drinking clears (he's eating homemade chicken broth as I type).
This afternoon, we met with one of the doctor's that run the pain team... All I can say is, "Why didn't they have a pain team for the last surgery!"... No... I'm so grateful they have come up with this idea! It's essentially an anesthesiology team that work to keep the children comfortable, especially after a painful surgery or procedure. The plan is, believe it or not, to use an epidural. The epidural enables the them to block the pain without slowing the gut. Dr. Li said that morphine will be available for breakthrough pain and that if the epidural works (there is a chance that it won't), James shouldn't need much morphine. This will allow him to get up and around. He won't be groggy and when his bowel sounds indicate he is ready, he will be able to drink and then eat. Please call upon the Lord with us and ask Him to bless this plan for His glory and James' sake.
So, tomorrow is the big day, some three years and 5 weeks after James got his ileostomy, he should get his take down.
Before then, we are hoping to get a good night's sleep. And I need to finish washing diapers!
"Call upon Me in the day of trouble. I will rescue you and you will glorify Me."
This morning we were able to have a 'homemade' breakfast at the Ronald McDonald house. They have an incredible kitchen set up, which gives us a lot of flexibility. What a huge blessing!
After breakfast, we headed over to the hospital. We decided to drive since we had things we would need to unload from the car. Tomorrow, I'm hoping to walk! We registered right away and visited radiology. The radiologist thought James' colon looked like it had grown some in the last several months, but the rest of his intestines 'looked pretty small'. I forgot to ask if there were any signs of blockage. Quietly I called out to the Lord, that He would rescue James and make a way for surgery... and that it would work.
Getting admitted to the hospital and getting to our room all worked pretty simply. Unfortunately, the emergency room here was very overloaded and the surgery resident and intern didn't have the order for James' bowel prep in by 6 p.m.! About 5:30 (I hadn't realized how time had passed), the nurse commented that if we didn't get the order soon, surgery might have to be moved from Wednesday! Well, that lit a fire under me and I started to make phone calls. Then I realized the surgeon's office was closed for the day! Yikes! I called the Nurse Practitioner we have worked with and left a voice mail. I started to call the answering service for the surgeon and then realized that if I answered the questions wrong, or the wrong surgeon was on call, I would get no help at all... "Oh Lord, here I am in my day of trouble! You promised if I called out to you, you would rescue me!" Just as I finished praying, my faith for this was so small, I had no idea how the Lord would work this one out. Just long enough to see my ugly doubt, and there was a knock at the door. Dr. Parker popped in... looking like he was fresh from vacation (he did just have an almost 4-day weekend!). Just in time, he got the orders in place, answered my main questions and chastised the intern and resident for not calling him and getting the orders in place. Thankfully, no harm was done to James and hopefully someone learned a valuable lesson!
Just another hour and a half of go-lytlely (they'll turn it off at midnight) and then he just needs to sleep for the night. They had hoped to be done by 9 p.m., but this gives James a little longer for drinking clears (he's eating homemade chicken broth as I type).
This afternoon, we met with one of the doctor's that run the pain team... All I can say is, "Why didn't they have a pain team for the last surgery!"... No... I'm so grateful they have come up with this idea! It's essentially an anesthesiology team that work to keep the children comfortable, especially after a painful surgery or procedure. The plan is, believe it or not, to use an epidural. The epidural enables the them to block the pain without slowing the gut. Dr. Li said that morphine will be available for breakthrough pain and that if the epidural works (there is a chance that it won't), James shouldn't need much morphine. This will allow him to get up and around. He won't be groggy and when his bowel sounds indicate he is ready, he will be able to drink and then eat. Please call upon the Lord with us and ask Him to bless this plan for His glory and James' sake.
So, tomorrow is the big day, some three years and 5 weeks after James got his ileostomy, he should get his take down.
Before then, we are hoping to get a good night's sleep. And I need to finish washing diapers!
"Call upon Me in the day of trouble. I will rescue you and you will glorify Me."
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!
Friday, May 21, 2010
The end is in sight
Yesterday we visited Atlanta (James, Hannah and I). We saw James' oncologist, who was happy to report that James' counts were perfect! What a huge blessing and gift! I was supposed to ask the doctor about vancomycin (a favorite antibiotic for James during chemo) and hearing loss. But I forgot. So I will call and ask that questions, and may not get my answer til we visit again next month.
In the afternoon, we met with Dr. P, James' surgeon.
I think he asked me as many questions as I asked him. Well, almost.
He said James is doing everything he is supposed to be doing, but was quick to point out that there are no guarantees and that even though we put everything back together, there is still a chance it wouldn't work. He didn't try to paint any rosy picture. And I actually appreciate that.
If it 'doesn't work', then James would have to have another surgery and a permanent ostomy of some kind. But putting him back together should not be 'harmful' to James. So that is what we have decided to do.
At this point, we are scheduled for surgery on Wednesday, June 2nd. The day before (Jun 1st), James will have a contrast study of is colon to help Dr. P with his surgery plan and make sure things are good. If this goes well, we'll proceed with surgery on the 2nd. If not, then Dr. P will use the scheduled surgery time to do a visual exam with a scope.
I talked to Dr. P about using real food via g-tube if that is necessary and explained my reasons. He agreed and said that "you have all the backing and support you'll need". But then when we asked him about cloth diapers in the hospital, he said, "you can bring metal diapers, if you want." Some doctors are easier to read than others. If you know what I mean.
I'm still not certain about recovery time. At our last meeting in December, he said to plan on a two week hospital stay. This time, he told the scheduler that worked with us to plan on a 5-7 day hospital stay. We will plan on weeks and hope for 5-7 days (as long as that is what is best for James.
We have a lot to do to get ready. I don't guess we'll be squeezing in too much extra.
Lord willing, James only has 10 more days of re-feeding and one or two days of flushing left.
Hopefully, for good.
As always, we are grateful for your prayers!
In the afternoon, we met with Dr. P, James' surgeon.
I think he asked me as many questions as I asked him. Well, almost.
He said James is doing everything he is supposed to be doing, but was quick to point out that there are no guarantees and that even though we put everything back together, there is still a chance it wouldn't work. He didn't try to paint any rosy picture. And I actually appreciate that.
If it 'doesn't work', then James would have to have another surgery and a permanent ostomy of some kind. But putting him back together should not be 'harmful' to James. So that is what we have decided to do.
At this point, we are scheduled for surgery on Wednesday, June 2nd. The day before (Jun 1st), James will have a contrast study of is colon to help Dr. P with his surgery plan and make sure things are good. If this goes well, we'll proceed with surgery on the 2nd. If not, then Dr. P will use the scheduled surgery time to do a visual exam with a scope.
I talked to Dr. P about using real food via g-tube if that is necessary and explained my reasons. He agreed and said that "you have all the backing and support you'll need". But then when we asked him about cloth diapers in the hospital, he said, "you can bring metal diapers, if you want." Some doctors are easier to read than others. If you know what I mean.
I'm still not certain about recovery time. At our last meeting in December, he said to plan on a two week hospital stay. This time, he told the scheduler that worked with us to plan on a 5-7 day hospital stay. We will plan on weeks and hope for 5-7 days (as long as that is what is best for James.
We have a lot to do to get ready. I don't guess we'll be squeezing in too much extra.
Lord willing, James only has 10 more days of re-feeding and one or two days of flushing left.
Hopefully, for good.
As always, we are grateful for your prayers!
Sunday, May 16, 2010
Sunday Treats: Blooming Onions
When I suggested we stop buying potato chips a while back, I got the 'hairy eyeball' look. It's not like we even bought them very often, but nobody wanted to give up the option. Especially for birthdays.
Potato chips have absolutely no nutritional bang for the buck (unless you are horribly underweight and desperate for all the extra calories you can get--even then, the oil and salt used in most brands are bad for us).
So, I had to come up with some good substitutes, enjoyed often enough, to sway the crowd. First I had to find some recipes. Then I needed time to try them. Our weeks are already full, so I thought I would try Sundays. We had been having popcorn in the evening, but not as regularly as we did in winter.
We actually started out with potato chips and then tested a simple onion ring recipe. Then we resurrected this recipe, and adapted it to some of the diet changes we've been making. They really aren't hard, just a little time consuming. Don't worry if it isn't perfect. That's part of the charm!
I should have taken a picture of cutting the onion, but I ran out of hands! This time, I used unbleached white flour. Next time, I will try it with fresh ground spelt.
So, first melt and heat your good, healthy fat in a deep pan (I used coconut oil in a 3-quart pot) Then, you cut the onion. Dip it in an egg and milk wash (I used 2 small eggs and one cup of milk for two blooming onions.)
Potato chips have absolutely no nutritional bang for the buck (unless you are horribly underweight and desperate for all the extra calories you can get--even then, the oil and salt used in most brands are bad for us).
So, I had to come up with some good substitutes, enjoyed often enough, to sway the crowd. First I had to find some recipes. Then I needed time to try them. Our weeks are already full, so I thought I would try Sundays. We had been having popcorn in the evening, but not as regularly as we did in winter.
We actually started out with potato chips and then tested a simple onion ring recipe. Then we resurrected this recipe, and adapted it to some of the diet changes we've been making. They really aren't hard, just a little time consuming. Don't worry if it isn't perfect. That's part of the charm!
I should have taken a picture of cutting the onion, but I ran out of hands! This time, I used unbleached white flour. Next time, I will try it with fresh ground spelt.
So, first melt and heat your good, healthy fat in a deep pan (I used coconut oil in a 3-quart pot) Then, you cut the onion. Dip it in an egg and milk wash (I used 2 small eggs and one cup of milk for two blooming onions.)
Then roll and gently toss it in the flour mixture (1 cup flour, 1-1/2 teaspoons sea salt, 1/2 teaspoon cayenne pepper--1/3 of what the original recipe recommends, 1/2 teaspoon ground black pepper, 1/2 teaspoon dried oregano--I was out, so used Italian seasoning), 1/2 teaspoon dried thyme, 1/4 teaspoon cumin).
Dip in milk/egg mixture again and cover a second time with flour mixture to coat fully.
Serve with dipping sauce on the side. I doubled the sauce recipe since we were doing two onions for 8 of us. (1/2 cup mayonnaise, 1 Tablespoon tomato sauce, 2-3 Tablespoons taratoor sauce from this recipe, because I didn't have horseradish sauce on hand, 1/4 teaspoon paprika, 1/4 teaspoon sea salt, 1/8 teaspoon dried oregano (or Italian seasoning), dash ground black pepper, dash cayenne.)
Mmmmm.
What kinds of special foods do you like to make to replace old favorite snack foods?
Our mother's day
My mom and dad drove down for mothers' day this year. We had a really nice visit and absolutely gorgeous weather. Vern and the children planned the meal and prepared it and cleaned it up. Delicious food, relaxing holiday with family and perfect weather. We even got to sit around on the front porch!
What else could a girl ask for?
Vern picked a delicious BarbecuedGarlic Chicken recipe from a Lebanese cookbook we were given. It included a dipping sauce (called Tratoor bi Sade) with *45* cloves of garlic in 1/2 cup of olive oil and the juice of one lemon.
He also made and Afghani bread, called Nan or Nani, to go with it.
My mom brought a Nona salad. And the children made herbal mint tea to drink. Mmmmm.
What else could a girl ask for?
Monday, May 3, 2010
Been there
My children already know this. But my future grandchildren don't.
And with the current news of the day, it seems like a great time to write about it.
Vern and I met in Alaska, courtesy of the Exxon Valdez oil spill. Some may remember that about 21 years ago, the Exxon tanker Valdez ran aground in the Prince William Sound and dumped most of her load of oil. Exxon began clean up efforts, severely hampered by environmentalist oversight and the U.S. military was called in, just in case we needed to federalize the clean up. I was sent up to Alaska as a logistics planner and Vern was our Navy liaison officer. His ship was one of two Navy vessels providing berthing (sleeping space) to oil spill clean up workers. He was the only one who knew about Navy ships. To my knowledge, Exxon leased the ships.
There was a lot to be learned during the effort and while I was only actually on site for about 5 weeks.. and Vern was there for 6 or 7 weeks, we both learned to be pretty doubtful about the ability of the mainstream media's ability to accurately report a story.
We also realized that, in general, people don't learn well from history. The Coast Guard folks we worked with had lots of experience in oil spill cleanups. And they knew their history. Historically, oil spills have been one of those things that clean up themselves over time. During the two world wars, there were lots of spills and within a decade, there was usually no evidence of the spill remaining. This proved to be true of the Exxon Valdez spill as well.
Hopefully, it will be true of the explosion in the Gulf as well. Once the oil stops flowing.
And with the current news of the day, it seems like a great time to write about it.
Vern and I met in Alaska, courtesy of the Exxon Valdez oil spill. Some may remember that about 21 years ago, the Exxon tanker Valdez ran aground in the Prince William Sound and dumped most of her load of oil. Exxon began clean up efforts, severely hampered by environmentalist oversight and the U.S. military was called in, just in case we needed to federalize the clean up. I was sent up to Alaska as a logistics planner and Vern was our Navy liaison officer. His ship was one of two Navy vessels providing berthing (sleeping space) to oil spill clean up workers. He was the only one who knew about Navy ships. To my knowledge, Exxon leased the ships.
There was a lot to be learned during the effort and while I was only actually on site for about 5 weeks.. and Vern was there for 6 or 7 weeks, we both learned to be pretty doubtful about the ability of the mainstream media's ability to accurately report a story.
We also realized that, in general, people don't learn well from history. The Coast Guard folks we worked with had lots of experience in oil spill cleanups. And they knew their history. Historically, oil spills have been one of those things that clean up themselves over time. During the two world wars, there were lots of spills and within a decade, there was usually no evidence of the spill remaining. This proved to be true of the Exxon Valdez spill as well.
Hopefully, it will be true of the explosion in the Gulf as well. Once the oil stops flowing.
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.
Incredible People
The people you meet when your child has cancer are really a rare and incredible breed. The variety is great. The people are nothing short of wonderful.
Three years ago, when we moved our cancer journey from Minnesota to Georgia, we met Bill Ruck and his son Pierce. Bill and Pierce introduced us to Love and Learning, a reading program designed for children with Down syndrome. But I digress.
We followed Pierce through his Care Page, diligently kept by his mom, Elena. We were devastated when Pierce relapsed about a year ago. We rejoiced when he made it through a Bone Marrow Transplant last August and we felt like the world had been pulled out from underneath us when Pierce relapsed again shortly after his BMT. Pierce left this world just before Christmas last year. We had hoped to be at his service the day after Christmas, but we all woke sick with res and knew we didn't need to go sharing.
Since then, Bill has been rallying his energies to reach out to other kids with cancer and he's started a new organization. It is called 'From Thin Air' since Bill is so good with 'magic' tricks (the sleight of hand kind) and he is working to make memorable evenings for children will cancer to give them a break from the grind of treatment.
Check out Bill's website: www.fromthinair.org and follow from thin air on Facebook. You can probably friend Bill Ruck too.
If you have connections that might help Bill make special memories (like limos and restaurants and tickets to various events) or you know of a child in the Atlanta with health issues that could use a break from the grind of treatment, contact Bill and let him know.
He's the kind of guy that really wants to do all he can to help!
Thursday, April 22, 2010
What country children do when they don't have a swingset
Earlier this year, Vern got a nice hoist so we can pull up our own hogs and cows when we process them. We had, at Christmas time, done our first hog all ourselves and found it nearly impossible to lift it up to scrape and gut. So now we are ready for the next time.
Vern and Owen like to think ahead (or so they say :*), I think they just like to play with their new toys!) so they hung the hoist in the carport to practice with.
And our country children put the hoist to work, giving carnival-like rides to anyone in the family that wanted one!
Vern and Owen like to think ahead (or so they say :*), I think they just like to play with their new toys!) so they hung the hoist in the carport to practice with.
And our country children put the hoist to work, giving carnival-like rides to anyone in the family that wanted one!
Wednesday, April 21, 2010
What I know about James
There is LOTS to know about my little Jameser. And I admit, I have a lot to learn.
Monday, we went to Atlanta for James' monthly follow up with his oncologist. (As much as I love the folks in the clinic, I am looking forward to moving to every other month follow ups come October!). James looks great and so do his blood counts. We are grateful all is calm on that front!
That same day, we also met with Dr. Tenjarla, who follows James as a GI specialist. She agreed James looks great and his progress since we met three years ago has been nothing short of impressive. But... she doesn't want us to take the g-tube out yet.
She explained that it is really the surgeon who wants the g-tube to remain in place, but she made it plain that she supports their call and gave me more information to help me better prepare for James' surgery.
Evidently, many children who have this surgery (called reanastomosis) often end up in ICU for a few days. They may end up needing TPN and often need some sort of formula as nutrition and for getting things moving again in the GI following surgery.
I wondered how this would work practically, but, evidently, I hadn't yet asked all the right questions. Or hadn't asked the right people.
Having a g-tube for James will certainly make this whole process easier. We could use an NG tube, but that would, more than likely, make it harder for James to start eating by mouth on his own again. The typical children have a hard time increasing their food by mouth when they have another tube in the back of their throat. How much more would this bother James with his oral sensitivities? Probably a lot... and it would potentially be a big set back for him. We have seen this happen over and over again on the cancer floor, and I really don't want to put James through that.
That said, I'm not at all excited about TPN or formula either. But having this information, and a g-tube, will open the door for us to create our own natural food formulas at home to bring to the hospital to use for James. This will be a good thing, and as long as we can work out the details, I think keeping the g-tube for James will be beneficial all the way around.
I don't know how many of you have read a formula can recently, but all the carbohydrates in the formula James used for a time when he was on chemotherapy come from sugar and dextrose. ALL the carbohydrates! And the proteins come from overprocessed milk or soy. One thing we noticed is that as long as James was getting any formula at all, he had no interest in eating real food, but plenty of interest in 'junk'. Once we had James at home and switched him to homemade real food formula, he got interested in real food pretty quickly and it wasn't long until we didn't need to use the g-tube any more (we haven't fed him with the g-tube since last summer and we haven't used it for anything at all, including fluids, since November).
So, this is where things are now. I have a call into the surgeon to determine exactly what and how much has to happen before we can schedule James' surgery. And I will be calling a nutritionist we have worked with in the past for some help with numbers we need to consider when developing a 'formula' for James.
I am so glad and grateful to know this information now, so we can plan. I would feel so helpless to not get this when we were already in the hospital and I have nothing to work with. Thanks for your prayers. Please keep praying that the Lord would make our way plain!
Monday, we went to Atlanta for James' monthly follow up with his oncologist. (As much as I love the folks in the clinic, I am looking forward to moving to every other month follow ups come October!). James looks great and so do his blood counts. We are grateful all is calm on that front!
That same day, we also met with Dr. Tenjarla, who follows James as a GI specialist. She agreed James looks great and his progress since we met three years ago has been nothing short of impressive. But... she doesn't want us to take the g-tube out yet.
She explained that it is really the surgeon who wants the g-tube to remain in place, but she made it plain that she supports their call and gave me more information to help me better prepare for James' surgery.
Evidently, many children who have this surgery (called reanastomosis) often end up in ICU for a few days. They may end up needing TPN and often need some sort of formula as nutrition and for getting things moving again in the GI following surgery.
I wondered how this would work practically, but, evidently, I hadn't yet asked all the right questions. Or hadn't asked the right people.
Having a g-tube for James will certainly make this whole process easier. We could use an NG tube, but that would, more than likely, make it harder for James to start eating by mouth on his own again. The typical children have a hard time increasing their food by mouth when they have another tube in the back of their throat. How much more would this bother James with his oral sensitivities? Probably a lot... and it would potentially be a big set back for him. We have seen this happen over and over again on the cancer floor, and I really don't want to put James through that.
That said, I'm not at all excited about TPN or formula either. But having this information, and a g-tube, will open the door for us to create our own natural food formulas at home to bring to the hospital to use for James. This will be a good thing, and as long as we can work out the details, I think keeping the g-tube for James will be beneficial all the way around.
I don't know how many of you have read a formula can recently, but all the carbohydrates in the formula James used for a time when he was on chemotherapy come from sugar and dextrose. ALL the carbohydrates! And the proteins come from overprocessed milk or soy. One thing we noticed is that as long as James was getting any formula at all, he had no interest in eating real food, but plenty of interest in 'junk'. Once we had James at home and switched him to homemade real food formula, he got interested in real food pretty quickly and it wasn't long until we didn't need to use the g-tube any more (we haven't fed him with the g-tube since last summer and we haven't used it for anything at all, including fluids, since November).
So, this is where things are now. I have a call into the surgeon to determine exactly what and how much has to happen before we can schedule James' surgery. And I will be calling a nutritionist we have worked with in the past for some help with numbers we need to consider when developing a 'formula' for James.
I am so glad and grateful to know this information now, so we can plan. I would feel so helpless to not get this when we were already in the hospital and I have nothing to work with. Thanks for your prayers. Please keep praying that the Lord would make our way plain!
Tuesday, April 13, 2010
Brothers
James had just gotten a bath and Owen offered to get him dressed. Owen surprised us by dressing James to look like a miniature version of himself!
Brothers who match!
Smiling for the camera!
Sunday, April 4, 2010
Happy Resurrection Day!
In my mind, I have long thought that the events of Easter, or the Resurrection, warrant a much bigger and more significant celebration than Christmas. The Resurrection is central to the whole purpose and significance of Christianity, after all.
In reality, Resurrection Sunday always falls around week 6 or 7 of a 9-week run of five birthdays in our family. And I never get it together to do the things I would really like to do.
One thing we try to do every year is Resurrection Cookies. I didn't have much hope that we would get to do them this year, but last night at about 11:10, we were putting our Resurrection Cookies into the falling oven. When everyone is up, we'll get them out.
Here are the instructions:
Resurrection Cookies
1 cup whole pecans
1 teaspoon vinegar
3 egg whites
a pinch salt
1 cup sugar
a zipper baggy
1 wooden spoon
scotch tape
Bible
In reality, Resurrection Sunday always falls around week 6 or 7 of a 9-week run of five birthdays in our family. And I never get it together to do the things I would really like to do.
One thing we try to do every year is Resurrection Cookies. I didn't have much hope that we would get to do them this year, but last night at about 11:10, we were putting our Resurrection Cookies into the falling oven. When everyone is up, we'll get them out.
Here are the instructions:
Resurrection Cookies
1 cup whole pecans
1 teaspoon vinegar
3 egg whites
a pinch salt
1 cup sugar
a zipper baggy
1 wooden spoon
scotch tape
Bible
Instructions:
These are to be made the evening before Easter. Preheat oven to 300F. (this is very important --- don't wait until you are half done with the recipe).
Place pecans in zipper baggy and let children beat them with the wooden spoon to break into small pieces. Explain that after Jesus was arrested. He was beaten by the Roman soldiers. Read: John 19:1-3
Let each child smell the vinegar. Put 1 teaspoon vinegar into mixing bowl. Explain that when Jesus was thirsty on the cross He was given vinegar
to drink. Read: John 19:28-30
Add egg whites to vinegar. Eggs represent life. Explain that Jesus gave His life to give us life. Read: John 10:10&11
Sprinkle a little salt into each child's hand. Let them taste it and brush the rest into the bowl. Explain that this represents the salty tears shed by Jesus' followers, and the bitterness of our own sin. Read: Luke 23:27
So far the ingredients are not very appetizing. Add 1 cup sugar. Explain that the sweetest part of the story is that Jesus died because He loves us. He wants us to know and belong to Him. Read: Psalm 34:8 and John 3:16
Beat with a mixer on high speed for 12 to 15 minutes until stiff peaks are formed. Explain that the color white represents the purity in God's eyes of those whose sins have been cleansed by Jesus. Read: Isaiah 1:18 and John 3:1-3
Fold in broken nuts. Drop by teaspoon onto waxed paper covered cookie sheet. Explain that each mound represents the rocky tomb where Jesus' body was laid. Read: Matthew 27:57-60
Put the cookie sheet in the oven, close the door and turn the oven OFF.
Give each child a piece of tape and seal the oven door. Explain that Jesus' tomb was sealed. Read: Matthew 27:65-66
GO TO BED!
Explain that they may feel sad to leave the cookies in the oven overnight. Jesus' followers were in despair when the tomb was sealed. Read: John 16:20&22
On Resurrection Sunday (Easter) morning, open the oven and give everyone a cookie. Notice the cracked surface and take a bite. The cookies are hollow! On the first Easter Jesus' followers were amazed to find the tomb open and empty. Read: Matthew 28:1-9
You could even do them tonight if you like... or you can save the recipe for next year. In the meantime, everyone here wishes you a meaningful Resurrection Sunday!
Thursday, March 11, 2010
Amazing things
For a while now we have been trying to figure out how we could use cloth diapers for James. They wouldn't have worked well on chemo, we thought. Though maybe in hindsight they would have. But we were having the hardest time figuring out how to find one that would fit him.
(And, truth be told, I was a little apprehensive. Since I had had two less-than-impressive forays into the cloth diapering world 18 and 7 years ago.)
James now weighs a little over 40 pounds and there aren't a lot of diapers, by the chart, that looked like they would work. We did ask lots of questions, but it seemed that no one we were asking had dealt with special needs babies who often need diapers much longer than typical children. I really wished we could just try a diaper that was meant for a bigger baby.
Enter Twitter. Since Hannah tweets her giveaways, she's met a number of cloth diapering mamas and one of them very sweetly sent Hannah an extra large-sized FuzziBunz diaper she had! It came in the mail just yesterday! Hannah put it on James, who immediately sighed in relief. (Poor baby, he has been wearing size 6 paper diapers and they are just not big enough anymore.) Not only do these diapers fit, but there is room for James to grow in them. And, if we still need to get bigger, Fuzzi Bunz has an extra large diaper that was made with special needs children in mind!
We were so tickled that we began looking for more FuzziBunz and Hannah found this buy six, get one free deal at Mothering Grace. (Hurry, if you're interested, the deal ends today... but check out Mothering Grace as she hosts a weekly give away and other specials.) Turns out that these are the one-size diapers... and we need the perfect size diapers.
So, we set to searching again. And we found Fuzzi Bunz Seconds AND they have a deal going on for 10 diapers with liners for 2/3s the regular retail price! AND Fuzzi Bunz Store had extra liners 1/2 off in the clearance area. So we put in our orders last night and soon we should have our own little stash of nice cloth diapers that work (he never leaked yesterday in 6 hours!) and FIT! Hallelujah!
Once we had the diaper in hand (and on baby's bottom!), many of the things we had been reading about the new cloth diapers made so much more sense and we have learned a lot!
I'm so grateful to Hannah's Twitter friend for sharing with us!
(And, truth be told, I was a little apprehensive. Since I had had two less-than-impressive forays into the cloth diapering world 18 and 7 years ago.)
James now weighs a little over 40 pounds and there aren't a lot of diapers, by the chart, that looked like they would work. We did ask lots of questions, but it seemed that no one we were asking had dealt with special needs babies who often need diapers much longer than typical children. I really wished we could just try a diaper that was meant for a bigger baby.
Enter Twitter. Since Hannah tweets her giveaways, she's met a number of cloth diapering mamas and one of them very sweetly sent Hannah an extra large-sized FuzziBunz diaper she had! It came in the mail just yesterday! Hannah put it on James, who immediately sighed in relief. (Poor baby, he has been wearing size 6 paper diapers and they are just not big enough anymore.) Not only do these diapers fit, but there is room for James to grow in them. And, if we still need to get bigger, Fuzzi Bunz has an extra large diaper that was made with special needs children in mind!
We were so tickled that we began looking for more FuzziBunz and Hannah found this buy six, get one free deal at Mothering Grace. (Hurry, if you're interested, the deal ends today... but check out Mothering Grace as she hosts a weekly give away and other specials.) Turns out that these are the one-size diapers... and we need the perfect size diapers.
So, we set to searching again. And we found Fuzzi Bunz Seconds AND they have a deal going on for 10 diapers with liners for 2/3s the regular retail price! AND Fuzzi Bunz Store had extra liners 1/2 off in the clearance area. So we put in our orders last night and soon we should have our own little stash of nice cloth diapers that work (he never leaked yesterday in 6 hours!) and FIT! Hallelujah!
Once we had the diaper in hand (and on baby's bottom!), many of the things we had been reading about the new cloth diapers made so much more sense and we have learned a lot!
I'm so grateful to Hannah's Twitter friend for sharing with us!
Sunday, February 28, 2010
Three whole years
With stomach flu and a few other distractions, I nearly missed a very important anniversary.
While I certainly wouldn't have asked for this kind of an anniversary, I am grateful to be where we are in our journey with childhood leukemia. Three years from diagnosis is really a HUGE milestone, and sadly, not everyone sees this anniversary. From this point on, James' statistical chance of relapse is as low as it will probably ever be... in a very good sense.
Of course, with all the side effects and other things that affected James during treatment, we still have a few hurdles to overcome. The biggest hurdle is getting everything in order to get his ostomy reversed. In the fall, we were hopeful that the surgery to repair James' ostomy would happen this winter. For a number of reasons, that was unrealistic on our part and probably not a good time to be in the hospital anyways! Now, we are hopeful, that, Lord willing and James' little body cooperates and works like it needs to, he will be ready for surgery sometime during the summer.
We are amazed that life keeps humming along here. James is doing well in so many ways--the rash he had on his face for the last half of chemo has cleared up (though the skin still looks tender). He is getting taller (though not gaining much weight, which is good to a point, but won't be good for too much longer). He is getting to do some more 'normal' boy things, like play in the dirt and be outside (that will also get more difficult as the weather warms and we struggle to keep his ostomy bags on... until he has his surgery).
We marvel again at God's incredible mercy to us and His great provision for James and for us.
While I certainly wouldn't have asked for this kind of an anniversary, I am grateful to be where we are in our journey with childhood leukemia. Three years from diagnosis is really a HUGE milestone, and sadly, not everyone sees this anniversary. From this point on, James' statistical chance of relapse is as low as it will probably ever be... in a very good sense.
Of course, with all the side effects and other things that affected James during treatment, we still have a few hurdles to overcome. The biggest hurdle is getting everything in order to get his ostomy reversed. In the fall, we were hopeful that the surgery to repair James' ostomy would happen this winter. For a number of reasons, that was unrealistic on our part and probably not a good time to be in the hospital anyways! Now, we are hopeful, that, Lord willing and James' little body cooperates and works like it needs to, he will be ready for surgery sometime during the summer.
We are amazed that life keeps humming along here. James is doing well in so many ways--the rash he had on his face for the last half of chemo has cleared up (though the skin still looks tender). He is getting taller (though not gaining much weight, which is good to a point, but won't be good for too much longer). He is getting to do some more 'normal' boy things, like play in the dirt and be outside (that will also get more difficult as the weather warms and we struggle to keep his ostomy bags on... until he has his surgery).
We marvel again at God's incredible mercy to us and His great provision for James and for us.
Saturday, January 23, 2010
Giveaway: List Planit membership
Have you heard of List Planit yet? There is a giveaway for a one-year membership at Simply Being Mommy. Follow this link to learn more and sign up!
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.
Monday, January 4, 2010
The wall, part 1
Since we moved into our house--just about 2 years and 2 months ago--we have had one big wall that is still studs. Our hope, when we built, was to cover the wall with some sort of stained wood and build bookshelves on most of it.
Thanks to a very generous Christmas gift, we finally started! Vern wanted to put insulation in the wall between the living room and bedroom to dampen the sound.
Pictures below show the first steps. (I'll put up more once we get them downloaded from the camera.) I really enjoyed watching and listening to Vern and Owen work together. My heart longs for the day when they can work together all the time!
Thanks to a very generous Christmas gift, we finally started! Vern wanted to put insulation in the wall between the living room and bedroom to dampen the sound.
Pictures below show the first steps. (I'll put up more once we get them downloaded from the camera.) I really enjoyed watching and listening to Vern and Owen work together. My heart longs for the day when they can work together all the time!
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