Kristina Musings

There has been so much to process, so much to absorb. I think my only hope right now is that we can settle into some kind of normal. Which right now, I'm not too sure I see happening, at least not soon.

The lumbar punctures are exhausting. Emotionally, and physically. There is at least one more in my near future. The more I have them, the more I hate them. But its a necessary evil until everyone can feel certain my pressures are normalizing. Which doesn't appear to be happening.

The flip side is that my eye sight has improved some, we'll know by how much on Monday when we get another field of vision test done and see the ophthalmologist again. At the most recent follow up with the family doc she was sure to hammer home the fact that I may not be better yet, but I'm getting better. I have improved, just not how I may have liked - or as quickly.

This has been so difficult for me. I've had to lean on others more than what I'm normally comfortable with. I have to ask for help regularly, which is not easy for me. I get fatigued easier than I'd like to admit, and asking for help when I can't see well is so hard. It's been hard for me to even get used to the fact that I don't see well. Tripping over things, and if you're on my right side while in a parking lot or in a store its almost a guarantee I'll bump into you. I zig zag pretty bad if I'm not pushing a grocery cart, or holding someone's arm. Not to mention the fact that I obviously can't drive. Not being able to work and barely keeping up with my kiddo half the time is quite the contrast to the corporate working mom bit I was trying to keep up with. All of this change has been so overwhelming. All we can do is take it one day at a time and as best we can rest in the knowledge that He has a bigger plan that will come of this than any of us could ever imagine.

Thank you all, for your love and support.

Going home tomorrow. Finally.

We cooled our heels in the Rock all day, waiting to hear from the neurosurgeon. He finally called us about 4:30 this afternoon. We're good to go home.

What's next? Lots of doctor appoinments. At least one more spinal tap. Maybe some more detailed imaging. Hopefully no more emergency room trips. Everyone is very concerned that we stay on top of this to make sure Kristina doesn't lose any more of her vision, and for a while, that means we'll all be nervous as junebugs in a henhouse.

We hope the drugs she's on will continue to do their job, and that Kristina won't ever need a shunt. Shunts seem to be troublesome little critters, with something like a 50% success rate, and about a 50% revision rate. That means there's a two in four chance that the shunt won't work at all. If it does work, there's a two in four chance she'll need surgery again somewhere down the road to have the durned thing worked on. So, for you math whizzes, that means there's only a one in four chance that it works and never needs worked on. That's not good. We'd like to pass on that, please.

All that means we're not out of the woods yet, but we'll be home, and as of Friday afternoon-ish, we'll have our kiddo home, too. That's worth a lot.

What will we need? Well, if I'm honest, I just want our life to go back to its quiet, little routine, but that ain't gonna happen. We're going to have to find a new routine. We love that there are folks in our lives who want to serve us by bringing food. But here's the thing: We don't really need that right now. There are folks who need food a lot worse than we do, and Lord knows it's about time I cooked something besides frozen pizza. Kristina's mom is back to help us for a bit longer, and that has been a huge blessing for us. We could not have managed this without her moral and practical support.

And if you absolutely must do something, if you're a giver like that, head over to purecharity.com and pick a project to send a few bucks to. We're big fans of 99 Balloons in our house, but there's a little something for everyone over there. Or you can pop over to Givington's and purchase a little something nice and fund a cool charity project. Or take some food to the Samaritan Community Center, or to 7 Hills Center. We're big fans of the work those folks are doing.

Come visit, either way. Or call. Or text. Email. Facebook. Good Lord, we've got plenty of ways to be in touch. Pick one and send Kristina a little love. She needs the tender heart and the warm hugs of the Body of Christ right now more than the cook's hands.

Now, if you'll allow me a moment to wax philosophical, read on. If you have no patience for that kind of stuff, we're done here. Go back to being mad about the presidential election. Thanks for checking in. But you're going to miss the best part…

By all means, do everything you can to take care of yourself. Just remember: Shit happens. This thing came up out of nowhere and no one seems to understand why. We can point to none of the known causes of this condition as triggers in Kristina's case.

Could things have turned out differently if…? Maybe. And we'll look into a few of those questions. If we find that some answers are in the affirmative, rest assured, we'll deal with that appropriately. But the simple fact is that lightning struck. Boom. And everything changed. Random? Yes. Redemptive? I have no doubt. That's just how God works. Mysterious, huh?

This is a broken world we live in, y'all, marred by sin until our King and Christ comes again to redeem it for what it was meant to be from the Beginning. The control we try so hard to exert over our lives results — at best — in our living a dangerous illusion. Remember the One who made us. Honor Him joyfully, for He has already effected the redemption of all things.

It is finished. Already, and not yet.

Some useful information about Kristina's condition

A doctor-friend of mine sent me this link. It's got some pretty good, quick info about the condition affecting Kristina, and it can help give you insight into our difficult decision process.

More on Teena (11/06/2012)

Kristina's fluid pressure was on the high side of normal. Dr. Reding, the neurosurgeon, has yet to decide whether he thinks she needs to have a shunt put in. They're going to keep her for a few hours of observation, and he's going to talk to an ophthalmologist friend about whether surgery is called for.

By 6 pm we should know something. Either way, we'll be here another night.

Quick update on Teena (11/06/2012)

They just took Kristina back for her lumbar puncture. They're going to keep her for six hours for observation after the tap. Surgery will depend on the results from the procedure.

Update on Kristina's health

Kristina's been dealing with some pretty substantial health issues for the last week or ten days, and now that we finally have a solid diagnosis, we're due an update for the Big Wide World.

For the big-word geeks: idiopathic intracranial hypertension. Another older terminology is pseudotumor cerebri. Basically what this boils down to is that Kristina has a build-up of cerebrospinal fluid in her head, and that mimics the behavior of a tumor. This diagnosis makes sense of all the seemingly disparate and steadily worsening symptoms she's had over the last several days.

The nerves in the back of Kristina's eyes were badly swollen for several days, and they are now damaged. About her sight, she says it's like looking through a really thick piece of white tissue paper. So, severely impaired. We have a few follow-up appointments scheduled next week, but what we've heard from the doctor so far is that we'll just have to wait and see if, when and to what extent her vision will return.

She's had some complications from yesterday's spinal tap (which she turned all the way to 11, I'll have you know), so she's been ordered to lie flat as much as possible for at least through the weekend, and possibly for as long as a week. The doctor also ordered heavy caffeine consumption: a cup of coffee per hour for five or six hours a day until these symptoms fade. Buzzzzzzzzzzzzzzzzz. ;)

Lots of folks are asking if and how they can help. Short answer: I don't know. Kristina's mom has flown in from Charlotte... THANKS, JEANNE!!! Kristina's going to get bored, so visits from sweet friends are always welcome. I think we'll be able to keep on top of housework, food, etc., at least while Jeanne's here. I think she's planning to be here for as long as we need her, though, so...there you go. If you want to do something for us, we're probably not going to turn you down, but we're also probably all too frazzled to tell you what we need. Just ping us if you have some ideas. Email, text, call, Facebook, Twitter, IRL...you get the idea.

We welcome your prayers, with this one request: There's nothing wrong with hoping and praying that God will show His bigness by fully healing Kristina's vision. We want that, too. But more than that, we want Him to show His power by giving us joy in His Lordship, in His constant goodness, regardless of circumstance.

Sometimes He doesn't heal. And we want to live like we believe that's good.

"I do believe, but help me overcome my unbelief!"

An Aylin funny:

Aylin came home from school recently having learned "We will rock you".

Just now she climbs up on my lap where I'm sitting in the rocking chair and says to me quite seriously: "I'm gonna rock you, mamacita". I responded "You are?". Her reply "yes, sometimes ya got mud on your face..."

It took me a moment to connect the two. But I got there. ;-)

taking stock of the situation

Today I came across this little nugget from the life of King David, man after God's own heart:

Satan rose up against Israel and caused David to take a census of the people of Israel. 2 So David said to Joab and the commanders of the army, “Take a census of all the people of Israel—from Beersheba in the south to Dan in the north—and bring me a report so I may know how many there are.”

3 But Joab replied, “May the Lord increase the number of his people a hundred times over! But why, my lord the king, do you want to do this? Are they not all your servants? Why must you cause Israel to sin?”

4 But the king insisted that they take the census, so Joab traveled throughout all Israel to count the people. Then he returned to Jerusalem 5 and reported the number of people to David. There were 1,100,000 warriors in all Israel who could handle a sword, and 470,000 in Judah. 6 But Joab did not include the tribes of Levi and Benjamin in the census because he was so distressed at what the king had made him do.

7 God was very displeased with the census, and he punished Israel for it. 8 Then David said to God, “I have sinned greatly by taking this census. Please forgive my guilt for doing this foolish thing.”

1 Chronicles 21.1-8; see also 2 Samuel 24.1-10

Lots of people struggle with how to interpret these parallel passages, apparently, so I don't feel too badly that I don't have crystal clarity on what it means for me right now. But I've been home today, so I've had plenty of time to let the story ping around inside my heart and mind. Maybe it's a Captain Obvious kind of statement, but this story feels significant to the season I'm in.

I just don't know why. Yet.

Maybe there's something here about the enormous danger in taking our security and significance from — placing our faith in — something other than God. Maybe David, in his position of peace, security and comfort, lost that sense of the immediate presence of a rescuing, sheltering Father God. Maybe he just got bored. Maybe it was all of the above and then some.

I don't know. Yet.

The Orphans of Chernobyl

Severely physically and mentally handicapped, 5-year-old Igor was given up by his parents and now lives at a children’s mental asylum, which cares for 150 abandoned and orphaned children with disabilities. It is one of several such facilities in rural southern Belarus receiving support from Chernobyl Children International, an aid organization established by Adi Roche in 1991 in the aftermath of the world’s worst nuclear disaster. Vesnova, Belarus, 2005 (Gerd Ludwig/INSTITUTE)#

In an orphanage in Belarus, a mentally disabled boy enjoys the scent of a tulip. Children born in the fallout region are said to have a higher rate of birth defects and retardation, a belief supported by many—but not all—in the scientific community. International aid organizations established in the aftermath of the disaster continue to provide much needed financial support to homes and orphanages housing children affected by the fallout. Vesnova, Belarus, 2005 (Gerd Ludwig/INSTITUTE)#

Aylin funnies and other enjoyable things

Aylin is sitting in her beanbag watching Dora one weekend mid-day
Me: Aylin, would you like some lunch?
Aylin: Sure! I want it right here.
Me: I'm sure you would! ...

Aylin has started talking like a thirteen year old. "So, and, ah... I did not kick. Or hit..." I am convinced that sometimes, if she doesn't talk constantly she will simply explode.

When asked how old she will be at her next birthday "Thirty!" apparently we're multiplying it by 10.

Aylin gets a fruit snack in the morning on the way to school, usually yogurt covered raisins, regular raisins, or cranberries. I've started telling her if she doesn't finish them before she gets to her classroom then she must share with her friends. Now all the kids await her arrival and I was concerned we would have to stop altogether. But she handles the mob well. She covers the snack with both hands and requires the kids to line up, and ask nicely. Theres also lots of "just a moment", "wait patiently" throughout the process. Its pretty cute.

"Shut Up" is a bad word in our house. One that will get you a time out. So any time she hears it, particularly on the TV, the following occurs.
Aylin: "that man said shut up. I did not say shut up. We don't say shut up."
Mom/Dad: "ok, but don't say it any more".

While visiting Papa Joe, G'ma Linda, and Great G'ma Bernie. G'ma Bernie was going to be leaving so we told Aylin to tell her bye-bye and I love you. She gave her hugs, and told her bye. But apparently never said I love you. Several minutes after Bernie had left Aylin exclaims "Where's Grama Bernie? I've got to say I love you!" then was momentarily concerned/distraught that Bernie had left.

The little goof also enjoys shakin' her groove thang. I brought her to the office with me the Friday before Christmas because daycare was closed and I was only supposed to be in the office a few hours. I think she spent more time dancing for my co-worker and chatting it up with her than she did with me. But they enjoyed each other, and my co-worker has 3 young ones of her own. So it worked out well.

Halloween kitty cheese

Much fun was had by some. Any guesses as to who the Scrooge was? ;-)

See the full gallery on Posterous

I can't smile, I'm busy...

Like mother, like daughter? I had forgotten my phone at work today, so after dinner Aylin tagged along to retrieve it. She climbed right up into my chair. When I asked for a smile I got "no, I'm busy..." Then she climbed down to explore the rest of the office and decided jumping on the beds in the showroom was way more fun. :-D

Hands...

Mommy and Aylin's hands, contemplating bathwater wrinkled fingers.

Putting stickers on Bernie

She's having a blast.

Coloring and motor-mouthing

Reading with Bernie

While Papa Joe works on a hand rail for Bernie, she and Aylin are bonding over Veggie Tales stories.

Aylin playing with Uncle Rich

Smart Lil Cookie!

In the days/weeks since Aylin began using underwear at school and at home, she has potty trained very quickly. Almost from day 1 of trying on underwear at school she has rarely had an accident! Which, for better or worse, is one of the big milestones for moving up to the next room at daycare.

 

Generally the rule of thumb for moving up to the next rom has been:

1. 3 years old
2. Potty trained
3. Can drink from a regular cup or cup with a straw
4. Is able to keep up with the other kids in the class

Well aparently my kid has all of those down except for the 3 year old bit. So Monday when I came to pick her up she had spent the afternoon in the 3 year old class and has stayed ever since. In talking to the director about the unexpected move yesterday she mentioned that "Aylin is just ready. She is so smart, she needs to be with these kids. Now that she's using the potty regularly with almost no accidents she really needs to be where she can keep growing and learning". I was shocked. I mean, yeah, don't all parents want to hear those things?! Yet, I don't expect it so when I do hear it i I puff up like any proud momma would! I am so proud of my little bug!! Sounds like we may need to start planning our Potty Trained Party faster than I thought we would! Anyone up for some Chuck -E- Cheese?! :D

Potty Training Successes

Some of the most beautiful words to a mother of a toddler's ears are:

• I love you
• Night-night (means we're going to bed without a fight!)
• Please & Thank you
• Help you Mama?!
• Need go potty Mama! <-- the most recent addition!

We have been using pull ups and a potty seat for quite some time now, however Aylin's interest in using the potty at home has been very minimal. I tried not to push it, because I felt like it needed to be something she came to me with, or if she was asked if she needed to go and replied NO! I didn't want to force it. I didn't want it to become a frusting thing for her. Aparently that was a good plan! Off and on she has been trying during the day at school, but still didn't want to go at home. I would ask, and her immediate reaction was NO! The past week or so (I just noticed this yesterday from a potty chart at the school) she has been going more regularly on the potty at school. When I went to pick her up the teacher mentioned that she had done really well all day and that her pull ups had been dry all day. So after nap time they decided to try her in a pair of real panties and see how she did. She stayed dry ALL afternoon! So she came home in panties, and 4 more times at home she used the potty!!! I was so excited! She would quite randomly just start pulling on her skirt and then say "Need go potty Mama!" So we'd rush to the bathroom and she'd sit and go! She was so proud of herself. It was truly awesome. I couldn't be happier for my little bug who'se growing up!

Daddy's big boots

She loves 'em.