McDonnell Place

Friday, July 25, 2008

Bathing Beauty

Also titled" "The Reason I Take Way Too Many Pictures and Can't Narrow Them Down More; It's a Sickness."

I like this one for obvious reasons- she's spunky, she's mean, she's trying to ruin my camera.

But I can't decide if I like black and white or color, so I edit both of each and alternate them on here...

No, you can't see her face. So why'd I keep it? Because the water looks kind of like snow and I just can't toss it... okay? I can't.

I love her tongue stuck out and the mid-sprint.

I love her hands and the reflection of her suit. And her tush. Don't you just want to pinch it? Okay, well I do.

I love her eyelashes and the wisps on her neck, so even though the next one is more ideal, I can't toss this one either.

The one you definitely don't toss.

She was collecting clams all day and asking me to help her and she has chipped polish.

Her wedgie. She insists on wearing this suit even though it's too small for her. She LOVES this suit.

The splash. The splash is the reason this one wasn't trashed. It's nothing great, I know... but this is precisely my point- I have issues.

The pony tail swinging. It's too precious, sorry... can't toss it. Don't ask me to.

The expression.

The ponytail stuck to her head.

I don't have to explain this one, this one would be kept if I only picked three... (but don't ask me which the other two would be, that would be like Sophie's choice... not because they're all awesome, but because I'm sentimental and- let's say it all together now- "have issues.")

The expression.

The ponytail holder sticking out of the water, curly and pink like a literal pig tail.

Fully submerged... the kick and the motion in the water. It's a sickness, I know... this one could've been tossed... no, no it couldn't have.

The babyish coordination. She ALWAYS wipes her hair out of her eyes this way and when it's not in pigtail holders she walks around looking like the Swamp Thing. It always makes me laugh. one day she will learn to come up with it smoothed back and I will be sad. I might cry.

More of above... but I liked the angle and weeds because it shows where we were. (Don't make fun. Shut up.)

The light. I just like the light on her body and the fish on her back... no good reason to keep it, but, well, a sickness doesn't make sense, this is what I'm saying.

She was making a pineapple out of a pinecone. Chipped polish.

You can see the grains of sand falling off her feet... even better when it's not downgraded.

So serious. Drama queen.

Pointed. More girly than the first foot pic. I know... totally excessive and does she have another foot, anyway?

The fake smile smirk that she and Evan are so very good at now. And I haven't even posted the ones of the boys. Somebody send help. I am drowning in gigabytes over here. Throw me a recycle bin, QUICK!

Labels: Illness, Madalyn, photography, pics, pictures, summer

Sunday, March 16, 2008

Rash Bash 2008

Went to the Dermatologist. He loved me. I felt completely exploited while he took pictures, (all too excitedly,) of my arms and legs and feet and hands... and as he chose which part of the rash to biopsy... where to leave behind two little stitches. (And for the record, my inner thigh is NOT the "place least likely to annoy me," GENIUS.) Maybe for a person with twig legs, but these two thighs touch each other... in fact, they are good friends, and sometimes they flat out make out.

I took out my dad's stitches once when I was little, so I know how, and I can see that I'm healed and I think- shhh, don't tell Shaun, (he thinks I'm nuts)- that I might be sneaking them out myself as soon as I can buy scissors small enough...

Anyway, the Derm seemed to lean toward Guttate Psoraisis. He said it can be chronic. He said if it was, our treatment might be limited with my fair skin and with as wide spread as it was but let's just wait two weeks and go from there. TWO. WEEKS. I have already waited SIX weeks, two more seems like an eternity, but yeah, okay...

He was a real Pollyanna, that guy.

Right then I knew that some tears would go down, but could I hold it together till I got to the car? The nurse's empathy didn't help. Be strong, be STRONG... eeerrrrr. I growled inside my head for motivation and clenched my teeth like Rocky.

I made it to the car and called Shaun and the sound of his sweet voice might as well have been a megaphone commanding the floodgates to open. Poor guy thought I had been diagnosed with Lymphoma for sure because I couldn't even pull it together to say hello. Silence, while my chest bobbed and nothing came out. And I'm not really a crier. Seriously. I'm not.

I pulled it together enough to tell him I wasn't dying, and then I had to sob like a baby a few more times. I said, "you know, I've tried to be a good sport, I've thought 'well it's all relative, my health is generally good, it's no big deal,'" But I forgot that I was human and humans have to- occasionally- you know, be human. And part of being human is having emotions and ups and downs. So I threw myself a big pity party and Shaun was an awesome guest.

I called my Uncle R. when I got home (plastic surgeon) and he tried to lift my spirits and remind me that I was told "CAN be chronic" and that the doctor was doing the right things. I called my friend Jennifer who has, ironically, come down with the SAME thing, Guttate Psoraisis, and we're going to start a support group, so I think I'll get through...

Spent the weekend at the Springs and Gaylord Palms shooting sessions, so there's plenty of work to distract me. Two weeks will fly by- as they always have since having Evan.

But in the meantime, my Aveeno bath calls. Thanks for listening. If you made it this far, you are a better person than me. I would've tuned you out by now.

Labels: Illness, sick days

Wednesday, April 04, 2007

Tomorrow is the Day

On the way to take Evan to school this morning we passed cluster after cluster of kids on bikes with red shirts and bike helmets. Just when I thought we'd seen the last of them another cluster showed. I have no idea what they were doing but was curious. And Madalyn was impressed. She said, "Look, I see astronauts!" :)

Her surgery is tomorrow morning. The insurance stuff all fell right into place and the surgery coordinator said, "honestly, I'm amazed you pulled this off, it usually doesn't work out this way." I told her that was because I wasn't the one pulling it off but had prayed about it.

Right now Madalyn's running a slight fever, though. I'm assuming the Lord will bring her through it by tomorrow, as smooth as He's made everything else for us so far. My friends, Stephanie and Dana, are getting Evan home to me so I can let her sleep. Thank the Lord for friends and family; for the people who fast and pray over your children like they would their own, who offer to set up meals and entertain the children not covered in attention. Surely it is in them that I see the Spirit of the Living God the best.

I love Him.

And I love her. Madalyn. So I ask you to pray for her between 10:30 and 1:30 during her surgery tomorrow and I'll post updates when I can. From the bottom of my heart, thank you.

Labels: family, friends, Illness, Madalyn, Relfux

Friday, March 30, 2007

Surgery

Life really can feel like a Monopoly game some days; stop, do not pass GO, pay 185 dollars to the city.

I got a ticket on the way to the hospital yesterday morning for going 62 in a 40. It was the 29th of the month, and though I was 20 miles over the speed limit, I believe he was trying to meet is quota. I was so angry and he was so rude; "Is her condition life-threatening... what time is your appointment... well, you're going to be late... see, that only took a minute, m'am." I wanted to hop out of the car and pull some Jackie Chan moves on his shaved head; break him in half over my knee. But Madalyn was in the car and so instead I just cried. It was one of those days when I was glad there wasn't a fish on my car after all, because I was not exactly an ideal representative that hour.

Madalyn was so cooperative for the VCUG. She was told it was a potty table, the x-ray table. That all the kids looooove to go potty on the potty table. We put on our princess gowns, aka hospital gowns and lead aprons, and the tech put on her Ariel gloves- bright green. We spread her legs and strapped them to the table "like the butterflies on the ceiling," and I found myself very glad to be at Arnold Palmer, a hospital geared towards women and children.

She lay there in her small gown, clinging to her blankie and pony and breathing a bit heavy, not sure of what horrors awaited her. "It's not gonna hurt? No needles? No owies?" And I hate that they promised her it wouldn't hurt because it did. It's no wonder she doesn't believe them anymore.

When they tried to insert the catheter she tensed up and it was unsuccessful- several times this went on and they nicked her and caused a bit of blood during one, and finally, success. "You're all done- you did the hard part, you were so good, so brave!" we cheered.

"All duh-huh-hun?"" she panted, trying to pull herself together. They filled her with dye and we watched the dye flow straight into that right kidney with ease... then into the left as well, though not as much. The right ureter was much larger than the left from the pressure. I had my answer. The Lord had plans different from mine and I know from experience His are better, so I would make peace with this new news.

Then came the second difficulty of this test, when her bladder was full and she whimpered in discomfort.

"She has to pee pee," the doctor said.

"Pee pee! It's okay, you can go right here on the potty table," we cheered.

"I can't! I can't DO IT!" she yelled from her throat at us.

"yes, yes you can, just relax, it's ok..."

"I can't DO IT!"

So then they poured warm water on her. No luck. They turned on the faucet. Still nothing. Finally they got a potty seat and let her sit up on the x-ray table and after a bit of work and whining she did it, trying so hard to deliver. She had to then lie back down while pee-peeing so they could take a picture of that flow.

Then it was over. The hard part. Off to the Specialist's office while Madalyn told every person along the way, chest puffed out with pride, "I went pee pee on the potty table!"

So skipping ahead- Dr. Rich came into the exam room. He said, "well I'll tell you what the x-rays tell me first. She still has very severe reflux in her right kidney. At least a grade four, really more of a five. She also has it in the left which probably didn't show up before because she wasn't holding her urine and potty-trained yet for the pressure to build. Her right kidney is about 2 cm (or inches- I can't remember) smaller than the left. This is the same kidney with the severe reflux. What this tells me is that it needs to be taken care of. Now her kidneys are NOT damaged. This just means that one is doing 60% pf the work and the other about 40%. There may always be this discrepancy in size. But it needs to be taken care of. Because the prophylactic antibiotic has prevented break-through infections for this long, there's no rush. But she needs surgery sooner or later."

So since then, we've decided the sooner the better. The doctor was booked until June but they had a cancellation April 5th, next Thursday. So Thursday she will be having her surgery.

It is a THREE hour surgery where they will attach her ureters further down and into the muscles of her bladder through one 2-3 inch incision below her bikini line. She will spend three days in the hospital and face a 1-2 week recovery after that.

Take a quick peek here to see more about this condition and the surgery. Her ureter and kidney look like the #5 diagram. :(

Please continue to pray for her this week and especially Thursday. Pray for our insurance as Shaun is at a new job and we are covered in a retroactive manner by both our new insurance and Cobra. It could cause some annoyances and hurdles, so please pray that goes smoothly, and mostly for the surgeon, Dr. Rich, the anesthesiologist, and Madalyn's response and recovery.

Thank you all so very much.

Labels: Illness, Madalyn, Reflux

Wednesday, March 28, 2007

Tuesday in Retrospect

It was a LONG day. Madalyn only had two of her three scheduled tests, (I'll expound on that in a minute.) She was overall VERY brave and cooperative and quite a trooper. The nurses told her, "We'll have you back, any day." (Thanks, but no thanks.) But she delighted all the techs and nurses; told them all kinds of stories and facts and so on...

I guess I should start from the beginning. I woke up to Jack's cry, NOT my alarm as I had set it wrong, and we were 45 minutes late. That didn't seem to matter because nothing's exact there. They fit you in as it suits them. So we arrived hurried, Madalyn had two cups of Jello and lots of "Ator Gade" in the waiting room (only clear liquids) and I had nothing because I was filling out paperwork. I'm hypoglycemic, so not good. But we had made it there and I was content. The printer wasn't working at the admitting office, so we were super-late to the urology department. Didn't matter, come to find out, but was stressful enough to take a toll on me until we arrived and were told 'no matter.'

We waited a lot in there. Madalyn asked for food and drink and her time for that was up, even for the liquids, so I distracted her with Hello Kitty stickers and some new knock-off My Little Pony figures from Walgreens.

She was called in for the ultrasound and was very cooperative; precious, really, as she talked with the tech. The tech said her kidneys looked good and she didn't see any damage. Praise God!

We waited more in the waiting room, and then the morning took a rough turn when they called us back to sign papers and Madalyn, who was past the 'allowed to have liquids' hour, took a swig of her drink from the diaper bag while I was talking with the nurse. Another nurse asked, "isn't she being sedated," and we all stared at eachother, knowing this really stunk things up as her sedation would have to be changed to a different time.

They decided to go ahead and inject the dye before it expired right then and there through an IV tube they'd leave in until later, so that she could fit into the only slot for xrays that would still suit the schedule she was on- (I don't know, still doesn't make sense to me-) but her VCUG would have to be rescheduled. I nearly cried when they at first were going to cancel the sedation- I hadn't starved her all morning for nothing, gosh darn-it!! and I think they could see I was about to cry and immediately became accommodating.

But then it got much uglier when they went to get the IV n and couldn't find her vein! They poked a needle around in her hand and foot before finally succeeding on her other hand! It took three different nurses trying! She screamed bloody murder while three of us held her and called for her daddy! :( It was one of those awful, throaty, 'help, I'm being tortured" screams and when she called for daddy I couldn't help but think, 'DADDY? DADDY! I'm here suffering through this with you and you're calling for daddy?!' And that thought was followed with no small amount of guilt because this was precisely why she was calling for daddy; she thought I was part of the interrogation team.

It was also prolonged because between stabbing her they were surveying this hand and that foot, and then the hand again, looking for the best vein and each time she thought she was being stabbed because the restraint felt the same. "No more SCREEEW-DRIIIVERS," she yelled.

After that, I taught her the word needles, and she repeated for the following 6 hours "no more needles?" shaking her head, "No more needles," she answered herself with reassurance, or "No more ouwies? No more ouwies." (How do you spell that- owies?)

And it was a LOT of waiting after this, with no food or drink, in a room with no windows... till her test at 1:15, from 9:30 to 1: 15 we waited.

"I'm all done with tests?" she'd ask.

"No, one more, I said. But you're all done with owies. All you have to do for this test is sleep," and she leaned her head against my shoulder and clamped her eyelids tightly. "No," I laughed, "they'll give you medicine to help you sleep."

"Okay!" she said. (She takes medicine every night with no problem. That she could handle.)

At about 12:30 Shaun surprised us. I'm not sure how he found us, but he came on his lunch break and Madalyn was so excited to see him. They visited and then he had to disappear again before her x-rays. On his way out some nurse chased him down yelling "Doctor! Doctor!" It finally got so loud he spun around and looked at her. "Doctor, come with me!" she said looking right into his face.

"No," he said and lifted his work identity tag from his neck displaying Mickey Mouse ears, "Disney," he corrected her.

"Oh," she said, and scurried off to find a real doctor. I told Shaun this means he's really not a kid anymore.

Shortly after he left, we were called in for the Renal Scan. Madalyn was put on a thin table with curved sides to cradle her body. It looked like the inside of a casket and she was NOT sure about it, but tried to obey instructions. She told one tech, "I saw my daddy, he went back to work at Cinderelli's house, now are you gonna give me my sleep medicine?" Everyone laughed and told her she was very bright and then the other tech asked her if she knew what the bandage around her IV was called and she nodded, "Yes, that's called stripes," she said confidently.

"I did not know that," exclaimed the lady. She then unwrapped her stripes and started the sedation medication while Madalyn panted nervously asking repeatedly, "No needles? No needles? No needles?" shaking her head emphatically to answer her own question.

She relaxed a bit as the medication set in. She agreed to some lullabies and I stroked her hair while her eyes tried to stay open. The second I stopped stroking they closed for good and she was out. She was so tired from a long morning that it only took 2 mg and could've taken 4-6. The less medicine the better, so that was good, although I worried that she'd wake up in the middle and we'd have to start all over.

She didn't.

I watched the HUGE x-ray machine do circles in small fractions around her sleeping body for an hour and a half with her arms bound behind her head. She woke up from the sedation cranky and starving and traumatized, still asking "no more owies? No more needles? I'm all done? All Done! No more owies? No more?" We, (the techs and I,) promised and promised her no more, but she clearly didn't believe us.

The nuclear tech wasn't allowed to say anything, but I asked what they were looking for with this test, and she told me "black spots," and although I'm not qualified AT ALL to assess what I was looking at, I didn't see a single speck of black anywhere.

It sure was amazing, though, that they can inject a dye into her body that is attracted to her kidneys for filtration- that it glows all over her body, but like a light bulb there in the kidneys and bladder on the screen. it was amazing to see her little body lit up on that screen, and then the images that they are left with after removing the noise and other tissues; perfect three dimensional pictures that spin around of her kidneys, one bigger than the other, and just like kidney beans. The tech explained they splice it into hundreds of slices three ways, vertically and horizontally and another, and examine each "slice." She showed them to me and still, I didn't see any black. I am so thankful that even if there is scarring that I can't see, her kidneys certainly aren't ridden with it. Praise the LORD!

The VCUG test will tell us much, much more Thursday about the grade and severity of the condition, IF it still exists, and IF the LORD hasn't healed her in full. I really used to wonder back a year ago, when I was ridden with anxiety and gave it over in prayer along with many other people, if perhaps He healed her right then and there a year ago, only we wouldn't know until now.

Thursday will answer us.

Mostly, though, as we sat for each test and waited and waited, as she picked special Bandaids of every type and character and stickers and toys from the treasure boxes, and as the x-ray machine circled her fragile little body, I couldn't help but be overwhelmed with gratitude because some children spend their lives this way, and she doesn't. She won't even remember it. I now have a grave respect and admiration for the staff there at Arnold Palmer, who lavish these children with kindness, love, and expertise; who aren't afraid to face the sadness because it it is their ministry to help those in need, God bless them.

God, bless each one of them and leave them lacking nothing to perform what is required of them.

Labels: Illness, Madalyn, Reflux

Wednesday, March 21, 2007

Prayer Request

I'm asking for prayer for Madalyn. She has a kidney/urinary tract condition that was diagnosed about a year and a half ago. You can read the history, told by Shaun, here. Tuesday she has x-rays to see if it is still there, has improved, and whether or not it has caused scarring in her kidneys. Please pray for her; for her healing, for her bravery and safety during the tests (one involves dye and a catheter and is NOT pleasant, and the other involves sedation,) and for the doctor's wisdom and communication the following Thursday. I'll keep you updated and sincerely appreciate your prayers for her. THANK YOU.

Labels: Illness, Madalyn, Reflux