An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.
Monday, May 31, 2010
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
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
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.)
Test the oil temperature by putting a very small piece of onion in the fat. If it bubbles nicely, it's ready for the onion. Gently lower the onion into the fat with a slotted spoon. Fry for about 10 minutes.
Mmmmm.
What kinds of special foods do you like to make to replace old favorite snack foods?
Our mother's day
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.
Monday, May 3, 2010
Been there
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
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
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
Sunday, April 4, 2010
Happy Resurrection Day!
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
(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!