September 29, 2008
Sweetness
He gave me a rundown of the various tubes I should be expecting to see coming from Sally when she's in ICU. Then, he explained what would be coming or going from the said tubes. Then, he told me about lungs collapsing and pneumonia. Then, I asked how long we should expect Sally to be in ICU and he replied, "Oh, three to seven days." Like so nonchalant. I guess he didn't meet up with the planner in my mind that had us there about two days. Big difference in two and seven. Especially when you are talking about sleeping in a chair and watching your kid live with tubes coming out of her everywhere. I was giving him my 'deer in the headlights but faking like I'm okay with everything he just said' look. I think he knew I was freaked out. I'm not a very good faker.
I picked up the rest of the brood from my dear, absolutely should be sainted, friend. We went home and unloaded more groceries (I bought 10 loaves of bread today, I'm officially losing my mind). I laid the baby down for a nap. The biggies and I made chocolate chunk cookies.
Yeah, I'm thinking that's probably not numero uno on the list of things to do days before your daughter goes into surgery. I missed getting that list upon arrival at parenthood. So, I'm making up my own rules and they include chocolate. Lots and lots of chocolate. While our deliciousness was baking, I pulled out odds and ends of schoolwork to finish. This caused a barrage of complaining by the eldest child (who has determined that he needs to go directly to college since he's done with this nonsense). His murmurs blended well with the bickering of two more children and I had to send everyone to opposite corners of the house. A moment later, eldest somersaults from his appointed chair onto cast enclosed daughter and slams her to the floor...face first.
I'm at my breaking point, folks. I sent the offending boy outside and followed him. Then I explained that I couldn't take little tiffs. They could wait until life was normal again and bother each other. For now we must all get along and OBEY me. Then, I sent him in to do his work like a pleasant child and I...bawled...like...a...baby.
I just sat in the sun and had myself an absolute sob fest. Shoulders shaking, tears streaming down my face, and crying to God. I haven't cried since the day we found out about Sally's surgery. She watched me cry in the elevator and still asks me, "Why did you cry when we were at the doctor's office?" Obviously, that made a big impact.
I've held it it for too long and let *some* of it out today. In front of 4 pairs of eyes. I heard their whispers through the screen, "Everett, what did you do to Mommy?" A minute or so later one of them said, "Mommy, do you need something?" Then a chorus of, "Can we help you? Are you okay?"
God, why did you make them so rotten with this wonderful sweet streak? I hugged them all and we sat down and ate too many chocolate chunk cookies. Still only three days until surgery, but for a few minutes that's forgotten.
September 28, 2008
No news
They did cut the cast off, but had to do it BEFORE she was knocked out. The anesthesiologist took one look at her and said he couldn't get her mouth to open wide enough to put her out. So they brought some 'happy juice' and the saw. It came off right there in pre-op. Sally was loopy, but managed to wail the entire time. He sanded the edges down so it won't cut her and then put it back on with bandages. My eyes actually started welling up with tears because of the strong odor. The inside of the cast is brown with dirt, funk, and skin. She had three flowers from a headband embedded in her back. She picks at the headband and I guess one day a few fell right down the back of the cast and got stuck. She also had some grass and unknown other items down there too. The nurse and I rubbed her down really well with a warm washcloth. Sally just kept repeating, "Ahhhh, more, more!"
That night she sat in the tub for a long time and I scrubbed and scrubbed. It was disgusting. She was ecstatic about taking a bath after so many weeks of just dipping her toes in.
Four more days until surgery...
September 26, 2008
Final MRI
That afternoon, I backed Moby into a mailbox at the piano teacher's house. At the grocery checkout afterwards, I had to leave my groceries on the belt and RUN with Sally to the bathroom because she has a terrible habit of waiting until urine is running down her legs before she mentions needing the facilities.
That was just Monday. Imagine four more days of incidents like that (though no more wild creatures have arrived inside the house). That would lead us to today. Sally has her pre-surgery MRI and CT. Afterwards, while she's still knocked out, her cast is going to be removed. I'm thinking that the guy who cuts it off may need a mask. It stinks so bad that Eli asked last night if worms would come out with it (yuck). Then Everett said, "Nah, not worms, but definitely lots of dirt. Tons of dirt."
Either way it's going to be nasty and they are planning on putting it back on her by wrapping a bandage around it. Personally, I think plans may change once they get a whiff. Like torching the thing the moment it comes off of her body. The doctor is nervous to let her be without it for the next week. So she'll get to take it off to bathe and sleep.
The scans today will give the doctors a last view of what they are dealing with. Hopefully, the abscess will be small and there will be no surprises. We will meet with him on Tuesday to hear his final plans for surgery. We are still praying that both surgeries (on her back and her front) can be completed Thursday. Prayerfully she'll need only a week to recover and then we will be home.
Thank you for your prayers, encouragement, and recipes! You all have been a blessing to me and my family! I'll do my absolute best to update the blog as things happen next week. Please continue to lift Sally up in your prayers as surgery day approaches.
September 20, 2008
My Questions for You
#1 I'm looking at one week, maybe two weeks, but possibly even a month or more in the hospital with Sally. I have my mother, my in laws, and my husband for help with our four non-hospitalized kids. That means they need meals. It could possibly be just 7 dinners (fending for breakfast and lunch is easy) but could be around a month of meals. Anyone have easy ideas for meals that I can freeze? Kid-friendly, but really easy for me to prep (remember, I've only got 11 days left) and just pop it in the oven and go? I'm willing to experiment with all kinds of crazy food, but I'm not about to leave my mom trying to convince Eli that he should eat the spinach stuffed shells.
#2 I haven't had a child in the hospital (excluding emergency room visits) so I don't know what to expect for a long term stay. Anyone have any advice on what to bring/do for Sally? How about advice on explaining surgery and hospitalization to a child who doesn't have a firm grasp of English? We've already read "Maisy goes to the hospital" about 1,568 times. Any other suggestions?
#3 What about the kids who have to stay at home? What kinds of things can I do now to prepare them? And (this is just merely because I'm curious) should I make them do school?
I'm making myself crazy. I feel like I'm getting ready to leave the country, but the hospital is only a scant 5 minutes away. I'll be coming home. Our kids will be coming to the hospital. My family can call if they can't find the casserole dishes. Though I'm planning on contributing to a landfill by supplying paper products for the time that others are responsible for maintaining sanity around here. Loving on the kids will be enough, I don't need to ask them to run the dishwasher...or cook...or wash clothes...or clean the bathrooms...
I appreciate all of you--your emails and comments have been so encouraging! I'm actually writing this post because so many of you were so helpful with the "stinky urine soaked cast" issue. I figured a bunch of genius' like you could help me a little more! Looking forward to hearing from you again!
Just to give you an idea of my mental state: I bought 15 jars of peanut butter today because they were on sale and (here's the kicker) "I don't want anyone to run out of peanut butter while I'm at the hospital." We do eat a lot of peanut butter, but I don't think we will be running out until 2015 much less in the next month.
September 15, 2008
Run in with an escalator
We just left the dentist. I should have gone directly home and taken a nap. But, Everett needs a pair of slacks for church. I decide that stopping at the department store wouldn't be a bad idea. I must have lost my mind. Every time I get home from an "event" I always forget about the looks, questions, and conversations that take place while I'm out. We are a spectacle. Five kids walking around with one adult would get some stares. One Asian child, two African children, and two white children walking around with one adult gets quite a few stares. Add to it that one child is in a cast up to her neck (talking LOUDLY ALL THE TIME) and we get more than looks. It's almost as if the Muzak in the background screeches off while we walk by.
We get into the store and ride the escalator to the second floor. Now, I realize that escalators can be dangerous. I've heard the 'crocs stuck in the escalator' stories. But they are high fun for kids. Especially the kid that hasn't been on an escalator since the plane trip home from Ethiopia. We shop, I see the prices, we get ready to leave. Our trip up to the second floor was so easy that I don't consider how careful I need to be on the ride back down. We are all seasoned riders now, right? I don't realize that you can't see how high you are as you ride up. Looking from the second floor down a moving staircase is terrifying.
Ella got on and then I stepped on (with baby in sling) and Sally ripped her hand out of mine and froze. I'm going down...down...down. Three of my kids are standing at the top. For a split second I consider running up the down...but I'm not Lara Croft. So I start yelling (this is more my modus operandi), "Everett stay with them! You guys just stay there! I'll be right back! But, GRACIOUS STEP AWAY FROM THE ESCALATOR BEFORE YOU FALL!!"
I slowly turn around as they step away and meet the stares of the entire cosmetics department. All conversation has ceased. All eyes are on me. Ho hum, nothing to see here folks. I'll just be running over to the other escalator. For fun.
I almost told Ella to stand by the earrings and wait (she was slowing me down) until I got my wits about me. Telling this child to stay put would be idiotic. Once, I gave a spiel about taking candy from strangers, helping to search for lost puppies, etc. After my 30 minute talk about stranger danger, I asked her what we say to strangers who offer us candy. Her reply, "Thank you!" Yep, can't leave her alone. Ever.
Ella and I get back onto the escalator and as I'm pulling her around the corner I hear this thumping noise. It's my other three kids who have overcome their fear of escalators and found out that playing with the rubber black handrail can be quite entertaining. Just as I'm almost to them, two concerned clerks approach them. And why wouldn't they? Three kids alone playing on the escalator? Sounds negligent to me. Dangerous even. I think I hear children's services being called as I grab two sets of hands and pull them onto the escalators. We safely make it down and I try to hold my head high as we make our exit. Sans new slacks and sanity.
September 8, 2008
Just for Auntie Gayle
We were joined by Aunt Gayle and Uncle Dale. I'm certain that they were completely and utterly overwhelmed by our
obnoxious exuberant brood. (It doesn't matter how you slice it; five kids equals madness when compared to a household of two). We managed to put on quite a showstopper of an afternoon. Entertainment included high diving by Ella and Eli, pouting from a master-in-training (Salomae), and amazing eating feats by Josiah. Sadly, this could only be found exciting to those closely related to our prodigies. I saved the day by providing corn-on-the-cob. Who knew that Auntie Gayle was such a fan? It only took about 3 hours to grill on our slower than molasses contraption called a gas grill that your husband refuses to fix so you can just dump charcoal in it and grill that way. For years. And wonder why you even bother to grill at all.
Eli working his wonders as he flops (on his knees) into the pool from a standing position on the slide.
That said, Aunt Gayle must have been charmed because as she was screaming out of the driveway leaving; she gave me a gift for the kids. I promised her that I'd let her know what I decided to do with her 'little gift'. Drum roll please...
We threw the kids a party.
Once I thought about it, I figured they didn't need more toys (though they would have been happy with that). It's back to school time. I was feeling a little sad for my kids as they watch their friends getting ready for a new school year. So I told the kids we'd have a party for them and some of their home schooled friends. Auntie Gayle made it happen. Complete with water balloons, grilled hot dogs (why did I bother, the microwave would have been fine), sand, bubbles...and chocolate. They had a blast. I think Aunt Gayle might have enjoyed it--just picture Popop's birthday but add another 20 children (and water balloons). You get the idea.
September 4, 2008
Happy Birthday, Everett!
August 28, 2008
The Vacation Post
I actually had more pictures posted here, but got frustrated with how they were organized. It may seem a little cluttered or disorganized as a result.
These two are from the rodeo. If you don't "get" what Eli is doing, then read this post from last year and get ready to pee in your pants. If you overlook Peta violations and child safety issues, watching kids bullet out of a corral on a sheep is hilarious. Everett, unfortunately, was too old to participate this year. He was part of the peanut 'somethingorother' where you dig up peanuts for cash. He and about 20 other youngsters raced around in the sawdust and poo digging for bags of peanuts. At the end of the allotted time they were paid a dollar for each bag they found. Delightful, until you, and an entire stadium of onlookers, watch as your eldest and another boy struggle over the last bag. They played tug of war until the sack ripped in half and peanuts spewed everywhere. It did my heart right to see Everett reach into his pail and give that boy one of his bags. I congratulated him on his generosity when he sat down with us. His reply? "Oh, that was his bag, I took it when he dropped it but decided to give it back to him." Oh, okay.
Here's a 'Before' shot of the clan as we decided to take an afternoon stroll. My Dad and Grandma sat this one out (because they are so smart). One minute we are walking across a meadow in the Ozarks and the next minute we are in the jungles of Vietnam (complete with hacking ourselves a path through 6 foot tall bamboo). Thankfully, we had cell phones and called my Dad in for a re
This is Sally meeting her first fish. It didn't go over so well. Later, she was reclining in my Mom's lap when Ella yanked a fish out of the water so fast that it flew behind her and nearly took Sally's face off. She mentioned that incident just a few days ago. Scarred her for life.
This is my Great, Grandma meeting our new babies for the first time.
Little, Teeny, Tiny Update
We are going to be dealing with the cast for a while. I think we may be stuck at home after next week because of the smell. Really. I think I caught a whiff of it at the surgeon's office (Seth told me that it was Josiah's diaper, but I don't know...).
We had two appointments today. One check up on the cast. "Yep, it's going to get stinky. Hmm, use some masking tape to cover that area and spray her with Febreeze." That isn't too much better than what I was already doing. It's sort of worse, really. I've got a pretty good mental picture and it makes me laugh. The little news-she's going to get the cast off the week before surgery to let her skin get nice and healthy (and CLEAN). That means we have about 4 weeks until it comes off.
The second appointment was with the pediatric surgeon who will be "assisting and helping with access" during the surgery. He answered our questions very thoroughly and reassured us that we are in very good hands. He also went into detail about the surgery and where they are going to be cutting, etc. but I'll avoid discussing that since...do we really need to go there?
August 20, 2008
Week in Pictues
August 17, 2008
The Date Has Been Set
When my dad was diagnosed with cancer a few years ago, I remember stumbling through my day wondering how everything could still be so normal. I felt like I should be wearing a scarlet "C" on my shirt so anyone I met could understand what was going on in my life. The day after I found out, I was running with a friend and the normalcy of what we were doing struck me. I finally blurted out, "My dad has cancer."
So I'm doing that right now-with this post-I'm blurting out, "My daughter's spine is disintegrating and she's having surgery in six weeks."
Thursday was our monthly check-up with our orthopedic surgeon. We did not get good news. I had a feeling things weren't going to be good. Salomae hasn't been able to stand up without her brace on. Every morning she calls out, "Mommy, brace on!"
We had x-rays without the brace, then waited for the doctor. He came in and examined Sally. Then he sat down and I've selectively forgotten everything that followed after the statement, "We need to do surgery within the next 4-6 weeks."
I recall asking about our trip to the beach that we planned for the end of September. Like an idiot. I have been working on this trip, planning to start our school year early (tomorrow) and go to the beach late because of Seth's work schedule. I wanted this trip because I'm afraid that next summer my daughter may not be able to walk in the sand or play in the water. Of course, I didn't say that to the doctor. I wouldn't have made it very far into the explanation without breaking down and bawling.
We knew it was coming, but I had put it out of my mind. I hoped that Sally would have more time with us before we throw her life into a tailspin. Last month the curvature of her spine was at a 32 degree angle. On Thursday, her vertebrae were curved at 67 degrees. It's obvious that we can't wait much longer before something has to be done. The more her back curves, the more her spinal cord stretches and the harder it will be to repair later (if she doesn't suffer neurological deficits beforehand). Her doctor wants to put her in a cast this week (Wednesday) that will go from her hips to her neck. His hope is that this will keep her where she is until surgery (October 2).
During surgery, he will take her tenth rib and rotate it around so that it supports her infected vertebrae. The rib will still have a blood supply and will eventually form one bone mass where her weak vertebrae were. Then, he will put hooks along the outside of her back to give her more support and pull her back up some. We are praying that he can perform both surgeries in one day for obvious reasons. Otherwise, she will undergo the strut graft (rib to vertebrae surgery) and recover for a week then the next surgery. There are about a million things that could go wrong. I'm trying not to think about them, but finding myself slipping into this 'what if' place.
I can't help but think about Isaac in California. Watching his story unfold over the past 6 weeks has been terrifying. My kids have been especially touched and pray nightly for his health and recovery. I spoke with Jocelyn (Isaac's mom) on Friday night and she reassured me that Sally is in as good a spot as we could hope. Sally's case isn't as bad as Isaac's. I know of two other cases in the US recently and there were complications in both. Considering the odds, I don't think we can expect Sally to go in for surgery and leave the hospital the next week. I'm not normally a pessimist, but I've got to plan for at least 3 weeks in the hospital with my daughter. I'm thanking God that my Mom and in-laws are retired and willing to come up and help. I'm thankful that this doctor is five minutes from our house. I'm thankful that Sally is here and not in Ethiopia suffering with Pott's disease. But I'm still scared and wondering how things will be in a few months.
Friday morning, Everett came downstairs before anyone else was awake. The first words out of his mouth were, "I should have what Sally has instead of her."
I wasn't sure where he was going with this and asked, "Why do you say that?"
"Because it would be better for me to be sick and in the hospital instead of her. Or you, or Daddy could have it. Just not her."
I cried.
August 13, 2008
A Quarter Inch of Happiness
She's having seizures, but they are...less noticeable. She doesn't have grand Mal seizures, her's are a flutter of her eyes and losing a few seconds. Before the meds they happened a dozen times a day. Maybe more. Always more if she didn't get enough sleep or was
Before we went to Ethiopia, Ella was getting her shoes on and came running into the kitchen. She stood in front of me, quite determined, and said, "I want another leg. I want two feet. Like Eli and Everett has. I want a foot like this 'real' foot I have."
Oh dear me. What to do, what to say. I've been dreading this day. So, I start with, "Well, why do you want another foot like that?"
"Because I want wear flip flops."
Relief. This isn't so serious after all.
"Wha...Hmmm. You've got flip flops," Me, leading her to the Birkenstock sandals that are strappy.
"No, I want it go in my toes. Like Everett and Eli have. I show you." She runs off to show me a 'true' flip flop. I obviously already know what a flip flop looks like and that indeed it does go between your toes. Unfortunately, her prosthetic foot is a mold of toes, all one piece, and honestly in pretty bad shape. At that point, the toes were just barely hanging on.
She runs, breathless, into her bedroom with a flip flop on her right foot. A camo flip flop. "See?" she says, "Between my toes. I want this."
It goes on and I promise that we can look for some shoes with a thingy between the toes. I'm planning to just cut the 'thingy' and have straps holding the shoes on around the ankle or something. I'm pretty crafty, you see. Or ghetto, depends on who you talk to.
Months pass, we go to Ethiopia and come home. We are busy now. Real busy. And Ella's toes are held on with a variety of colored duct tape. The replacement foot we ordered before I left for Africa never arrived. An insurance glitch that would get fixed in August. This was June. So we left that leg man and found another.
This guy is the man of Ella's dreams. He took one look at her sad leg and said she needed a replacement leg, not just a foot. And he ordered her a foot with toes that are separated for flip flop wearing gals like her. She loves him, I think. She drew him a picture with cats on it. She adores him. And we went shopping for flip flops that day. Even though it took about a month for the leg to get done. She can't keep the stinkin' shoes on, but she wears them when I let her.
August 8, 2008
Traveling Families
August 6, 2008
True Confessions
I'm not a perfect mom.
Lest you think I'm a superhero or Kate (of reality tv fame) I want to tell you that I am indeed a regular mom with regular problems (that more often than not involve some kind of child's bodily fluids). I'm thinking the best way for me to let you in on my reality is by making some confessions. Here we go:
1- My kids eat at McDonald's. Gasp. It is true. It doesn't happen on a weekly basis, but sometimes I've been known to make a drive thru appearance at the local McD's. Salomae ate a burger with a side of 5 nuggets last week. She's a true carnivore.
2- I don't order Happy Meals. They are too expensive. Yeah, we are that cheap. And did you know that there isn't a "Burger with side of nuggets" option?
3- I'm pretty selfish. I try to be, anyway. The other day, while weeding the garden with the kids, I noticed that there were raspberries ready to pick. I meandered over to the bushes and picked them. Then, in a moment of sheer selfishness, I decided to eat them all as fast as I could and NOT SHARE THEM WITH MY KIDS. Yeah. Didn't work because their 'Mommy is doing something fun' radars went off. I ate one raspberry before I was spotted and the masses converged on me to eat the rest of my bounty.
4- I can't do imaginary play. I just can't. I've tried. A few weeks ago I ran around in the backyard neighing like a horse being chased by four cougars. I couldn't get into it. I'd rather read a book.
5- Sometimes I get annoyed. That doesn't need an explanation.
6- Occasionally, while in Moby, during a particularly irritating spat between children, I will unroll all of the windows and blast whatever music happens to be on at the time. It feels good and the kids stop arguing. I think they do, but I can't hear them so does it matter? I've gotten some pretty strange looks as we pull up to a light with Vivaldi blaring.
7- I don't dust. I rarely iron. I don't particularly enjoy folding clothes (I 'wad' more than I fold). My kids socks aren't all that white. If we can even find two that match. I have a hamper full of socks without mates.
8- I don't wipe out Sally's brace with alcohol EVERY night like the orthodics guy told me to. She does wear a clean undershirt (changed after naps because she's so sweaty all of the time).
9- While on the cleanliness confessional kick: If they are clean, I don't make my kids take a bath every night.
10- I have actually yelled at my children.
There you have it folks. The bare naked truth. See, I'm pretty normal. By the grace of God my children will survive their childhood and as adults dote on me and call me blessed.
August 5, 2008
4 o'clock daily
Secretly, I hold a grudge against the program that doesn't trust us to consistently medicate our sick child. I understand the need for the government to check up on all the TB carriers in the area. If people don't take their meds, we could have a pretty serious problem on our hands. We comply by opening our home, begrudgingly. Do I sound a wee bit perturbed? Do you want someone to come to your house everyday? Just as naps are ending and sweet solitude is closing for the day.
I check the clock and wake Sally up. We talk in hushed tones to keep Ella asleep for as long as she needs. "Did you pee pee in your pull-up?" She giggles and always replies no even when I can see the rust colored urine staining the diaper. She scampers into clean panties and a clean undershirt. Then I strap on her brace. And I hear a knock on the door. Since 'pictures are worth a thousand words...'
Here's Sally's debut in 'nasty faces you can make while taking nasty medicines'. Well worth an Oscar.
July 30, 2008
Three Months
**I would have posted this yesterday but we have been visiting relatives (which could explain the previous post). Josiah doesn't sleep well outside of our home (anymore). Like averages 4 wake-ups a night. Last night was a special one for me, he woke up every hour from 3:30 on. Lovely.
On with the photos...
Referral picture of Salomae, mid-Feb (aka the grumpiest picture we have of Sally).
One month home
Two Months home (after picking mulberries in the backyard)
Three months home (after a lady at the hospital said, "Honey, I'm gonna give you my number--I braid hair." So I went to the library and checked out some books and tried MY hand at braiding.)
Josiah's referral picture
Gotcha Day with nannies and bunkmates.
Sitting up at one month home.
Two months home (on the hammock).
STANDING UP at the water table last week. Slow down kiddo!
Exhausted...
July 21, 2008
Josiah crawls
Later he 'chased' Everett's legos while everyone shrieked and scrambled to get them out of his way. (Have I mentioned that there is a LOT of shrieking going on around here? The addition of daughter #2 has tripled the shrieking. It seems to be a contagious activity. Like laughing. But louder and more obnoxious.)
It's my 31st birthday. Happy Birthday, Mom, I'm about to make your life very difficult!
July 20, 2008
Cuteness Abounds
July 17, 2008
Our Budding Libertarian
When we arrived at the park there were all sorts of tree cutting services parked along the street. Felled trees littered the sides of the road--general chaos. Wood chippers are always high excitement to small children so I saw that we'd probably spend some time checking out the heavy machinery. Alas, at the parking lot the business had already been taken care of and all that remained were some logs and stumps.
I'm baffled, by the way, as to WHY the parks service felt like it was important to cut down trees at the already tree-vacant playground. But they made sure that every last tree along the parking area was gone. As we unloaded our madness from the van, I remarked on the tree removal. Expressing my bewilderment to the children, I said, "Why in the world do you think that they would cut these trees down?"
Everett, without missing a beat, replied, "Because the government told them to."
Seth's remark upon hearing this story? "Well, that IS the only logical conclusion. If you can't beat 'em, join 'em." Which is why he is a libertarian who works for the federal government (and loves a good conspiracy theory).
Like father, like son.