August 28, 2008

The Vacation Post

I've mentioned it before, but I have a problem with procrastinating. When we got home from our weeklong trip to visit relatives (back in July), I was too busy to actually post about the trip and only managed to write about the poopy trip back. It's been bugging me that I never put up pictures (at least) from the week. Now, we just spent the weekend camping on the lake and I'm thinking that I'll probably end up doing the same thing and just waiting until the pictures become obsolete. Then, I was struck with the grand idea of just putting the favs on here. For posterity and to ease my conscience.

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 rescue.
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

All is well in the land of plaster and foam. Except for the stink of urine that hangs in a cloud around my daughter. I don't think she notices it; so I'm not making it an issue. Don't let her know that I've spread it all over bloggy world, but she wears a pull up to bed. I guess better stated, I could say, she has a pull up around her legs while she sleeps (since the cast keeps us from putting it on her properly). Then, the urine flows up along her back saturating the cast.

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 we really need to go there?

August 20, 2008

Week in Pictues

So much happened this week and I can't begin to write about it all. I'm overwhelmed with tasks at home and would really like to. sit. still. Everyone keeps asking me, "Have you been watching the Olympics?"

Huh? Remind yourself what you are asking. "Have you managed to get prepared for school, deal with medical issues, doctor visits, house cleaning, cooking, taking care of kids, and spending a moment with your husband and then sit down in front of the TV and watch other people being active since you didn't get to run today?" Yeah, not so much.

I caught a glimpse of the rowing while waiting at a restaurant 2 weeks ago. I enjoyed that while I could (since rowing holds a special place in my heart). I've enjoyed hearing about it, but end up feeling guilty since we haven't seen a lick of the games at home. Guilty about NOT watching TV; something is wrong with that.

Anyway--now that I've wasted all that time that I could have actually written about our week, I'll post the pictures--THAT I PROMPTLY DELETED FROM MY MEMORY STICK. I can't believe it. Looks like I'll be re-taking "first day of school pictures" today (day 3). Honestly, I'm a buffoon.

We started school on Monday. It was a little chaotic, but actually went well. I think the kids enjoyed themselves. They were THRILLED, I'll say it again for emphasis, THRILLED with school starting because they've been locked out of the basement for weeks. I did that last year with much success. It adds to the anticipation. Sally clamored for workbooks and pencils and the like so she caused no problems (on day 2 she grabbed a phonics workbook from Eli's stash and was just about to get going with a marker when I stopped her--she's an eager learner). Josiah played, ate, and napped. He did just what I had scheduled.

Tuesday, I realized that we wouldn't see Salomae's back as it is again. Ever. She's in a cast, she won't come out of the cast until surgery. Then she'll be back into a cast and hopefully heal up without a bump. So I took some pictures while she napped. So sneaky.

Today, she had her casting. It's not pretty, folks. She hasn't lost her ability to grin, but she can't move her head at all. AT ALL. She ate cheerios for 'lunch' when we got home (they knocked her out this morning to do the casting so she did without breakfast). Have you ever tried to eat cheerios without looking at the bowl? Her self-feeding skills aren't that graceful in the first place, but it's genuinely a mess now. We also can't figure out if she should sit or stand. She's got this space-age seat belt that lets her lie down on the seat of the van. She's not happy there, but terribly uncomfortable in her car seat. Everything seems to be a choice between the lesser of two evils. And she,"...wants this thing off and her brace back. Thankyouverymuch."

"You fool, why are you taking my picture in this thing?" She's a little grumpy upon realizing that it's a permanent piece of equipment. So much happier after eating and getting dressed...still looking awfully uncomfortable. Did you notice the handy 'Thanksgiving meal' hole in Sally's cast--they think of everything, don't they?

After a day like today, I decided to just go ahead and bring the girls (and Josiah) to the salon. On a whim (sort of), I hacked my hair off. I'm tired of looking like a tired, frumpy, mom of five. I can't do anything about the tired and five kids, but a limp ponytail? So I cut it off. Ella was so excited, but when it was her turn she bawled. I made her get a trim nonetheless. I'm a meanie. And I'm lazy and didn't want to cut her hair myself. Sally really wanted a hair cut, but she doesn't really have much hair to start with. Considering the gal had to cut my hair while I held a squirmy 10 month old; she did a good job. Photo taken by Salomae in such a manner that you can't admire my hair aside from seeing that most of it is gone. Finally.

That has been our week. I just realized its only Wednesday.

August 17, 2008

The Date Has Been Set

I've been distracted since Thursday.

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

My friend, the gal I previously mentioned that could write a cat blog, keeps me on my toes. She sends me emails with blog REQUESTS. I don't know if that is legal in bloggy world, but I allow her to do it. More often than not, I pacify her (lest she stop reading my blog) and do whatever she tells me. So she asked for an update on Ella, our goddess of drama and gorging herself on food. She's taking Depakote for her epilepsy. And that is that.

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 doing math with mom stressed. So I guess she's better off. I think. It's only a few times a day. Ugh. But that is NOT what this post is about...

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

Three families from America World are leaving to pick up their children today. These are babies that we photographed and videoed while in Ethiopia. I can't believe how much they have changed and I'm so excited to see them coming home. Here are the blogs of their families: Wesley's family , Levi's family, and Zamara's family. If you go back a few posts you can see pictures of their cuties from court day. I made Zamara cry and then videoed it, you can watch my wretched hand reach out and she starts bawling. A sure high point in my life as videographer for waiting families. Ugh.

August 6, 2008

True Confessions

I started thinking about the pedastal that I've been put on and decided that I needed to do a post that lets you in on a little secret. So get ready for me to knock your socks off...

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

Every weekday at 4 pm the health department nurse knocks softly at my door. I let her in and she watches me administer four anti-TB medications to Salomae. Then she leaves. As simple as that. She's a nice lady and Sally expects her arrival 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.

On the technical, medical side: The sample of fluid from Salomae's back came back positive for TB. No big news there, but the fact that they got a culture to grow is good. That was sent off to the state which tested it for drug sensitivity. We got those results last week and Sally's TB is drug sensitive (NOT resistant to the drugs she's taking). Which means we can drop off one of the meds--now she's down to three. In another month we should be able to drop another one.