A mini update

Hey all! Hope your holiday season is going great! Things are in full swing here. It’s been a busy couple of months, so I’ll just hit the high points…

We signed an agreement to lease some land with an option to buy.  It’s been pretty exciting! We got a couple of calves and within a couple of weeks, they were attacked by a dog. Progress has been slow, but the worst one is slowly gaining.

Jaydon is doing fairly well. He got sick this week and has refused to eat or drink much. I finally spelled everything out for him and he seems to be doing better. The “You eat and drink or we’re checking you into a hospital” speech works wonders sometimes. His labs are holding steady but he still looks like a walking skeleton at times. It’s a bit worrisome.

We have decided that we need to take a vacation 1-before the kids get too big/old and 2-before Jaydon’s condition worsens to the point that he won’t be able to fully enjoy himself – dialysis at Disneyland won’t be any fun!  It looks like we’ll be going to Disneyland for spring break – provided our taxes come through by then. So far, I’ve priced things and kinda have an idea what to aim for.

If anyone has any hints, tips and/or suggestions we’d love to hear them!  We won’t be able to book until February (stupid funding).

Well, that’s about it for today’s mini update. I’m hoping to get things going here as well as with my writing again real soon. HUGS!

Gotta Love Flash Fiction...

Here's the contest information...

I’m hosting a Super-short story contest. Here’s how to enter: In 100 words (give or take a few), write, then private message me a story using ALL of the following words: gator, captain, watermelon, gangbangers, Camaro, rescue, ice-pick, pivotal, and gushing. You have 48 hours to submit. The 1st place author wins a $25 Amazon gift card, plus I will post the winning story and a link to the author’s newest book or favorite book on my Facebook page for all to see!

Here's my entry...

Captain Camero looked over at his companion, Ariel Gator. He grimaced. “The gangbangers are at it again.”
“Yep. This watermelon is thrashed. They must’ve wasted a ton of ammo using it for target practice.”
“Look at this. They used an ice-pick on it.”
“Yep. They’re planning a hit. A big one.”
“Do we know who the target is?” Captain asked as he toed a watermelon with his boot. The shredded insides came gushing out as the rind split.
Ariel shrugged. “I’m guessing it will be a pivotal political candidate. We need to be ready to rescue whoever it is.”

I'll let you know how it goes! Should be a fun contest!

Here’s the scoop – Kidney update

Here’s the scoop – Kidney update (I'm writing this as I sit - waiting for the scheduling desk to coordinate our next round of appointments)

We went to see our wonderful Nephrologist (kidney specialist) yesterday. According to the charts, Jaydon is growing! He has gained at least 2 pounds and just over an inch in height. This is excellent news as we’ve been discussing the possibility of using growth hormones. Apparently, the switch in medications this summer was the perfect thing. I’m so glad doctors can work together to come up with a solution.

Jaydon’s labs look okay. Everything is stabilized and is holding steady. They don’t look good, but they’re not horrific either. He looks really healthy and seems to be doing well. We are still in the watch and wait category, but we’re doing good so far.

All in all, it was a fairly good day with an incident that resulted in mom getting a new pair of pants (I'm not posting that event here, it is much too embarassing).  This isn’t much of an update, but no news is good new sometimes…

I’ve gotten asked this question several times over the past couple of days so I’ll answer it here.

Question… Why don’t you just do the transplant now if he’s gonna need it in the future?

Answer… It’s complicated. He’s technically not bad enough yet. He has enough kidney function at the moment to maintain quality of life. He sleeps a lot, but he’s doing good still. Because puberty is so hard on internal organs, we’d like to get him through that milestone before we jump into that frying pan.

Thank you all for your continued prayers and support.

 

 

 

Mixed Nuts

Mixed Nuts. That’s what today totally was! I filled my car at the local station and went inside to pay. The cashier ran the check for the wrong amount (I had written it for over). I didn’t notice until I was at my car. I ran back inside. Since she hadn’t ever fixed one, I stepped behind the counter to help (I work there). While we were getting things squared away, a lady walked up and rather rudely asked me to move my car “People are waiting,” she said.

I took a moment to explain what we were doing so it didn’t seem like I was ignoring her. She stood there the entire time, huffing & puffing and tapping her foot. Talk about a Thumper Complex! I get done, collect my change and head out to the car. She practically herded me to my car! Then she and her husband/companion made several snarky remarks, which I promptly ignored. Let me insert here, there were a total of 4 vehicles at the 12 pumps, leaving at least 8 empty pumps, and I have to move?

Registered my oldest for school. Can you believe I have a freshman? UGH!

My hubby gets home, driving the truck he thought he had fixed so we headed over to Montpelier to haul one of the junkers to the scrapyard. Yay! It’s gone! We didn’t get what we wanted for it, but when do you ever really get what you want? I totally forgot to buy milk, too. On the way home, the truck started making funny noises so hubby pulls over and starts crawling around underneath. I hear “Oh crap.”

Oh crap as in ‘call for a tow now?’ OR oh crap as in ‘we can make it to the bottom of the hill’. We have friends at the bottom of the hill. Apparently this is the first “oh crap”. I grab my cell. “Start walking, cause we don’t have service.”

He scopes out the situation then we coast to the bottom of the hill & pull off the road where we have service. The calls ensue eventually ending with a very dear friend driving out of her way to pick up my wee ones and me. I get home, drop the kids off with my oldest, grab some water, order a sandwich & get on my way. At the store I discover that I’ve left my wallet IN THE TRUCK. So, I “stole with permission” and hurried to where my poor hubby waited in the hot, unair-conditioned truck.

We unhook one vehicle, hook up the other and then load the first. The construction guys had quite a laugh seeing our little Durango pull the big, ol’ extended cab, long-bed truck that barely fits on the trailer back into town.

The silver lining – At least the truck broke down this weekend where we’re close to home instead of in 2 weeks when we journey to the family reunion towing a camper trailer. AND, we know what's wrong with the truck-probably.

PS… I DID pay for the sandwich after we got back to town! AND, my mom was able to pick up milk, so we’re good there too.

When Chickens Attack... OR ... Haunted by Chickens...

It started like this, several months ago we acquired 5 meat birds (fast-growing chickens) that we have been raising and pampering and coddling all summer. We managed to save them from their own stupidity, raccoons, skunks, snakes and dogs. Finally they were big enough for the freezer and today was the day! Poor birdies!

I heated up the water to dunk them in – it loosens up the feathers to make plucking easier. We dispatched the poor beasties as humanely as possible. Down into the depths of the 90 quart stock pot. And now for the count. One one-thousand, Two one-thousand… Twenty One-thousand. Test the feathers. Some of the birds took more than one bath.

We commenced with the plucking. I’m such a mean mom, I made the boys help! Ha Ha! Moving on to the part where I eviscerate the carcass (for my non-farming friends, this means to remove the giblets, etc. No, they don’t come in those really nice white packages. It’s a little more messy than that).

Around the time when I was eviscerating carcass number 4, my knife slipped. I sucked in my breath quite rapidly then pressed my thumb over the already gushing wound. Making it to the bathroom past all my kids without them noticing the blood was quite the trick. Let me tell you, soap and water BURN! I grabbed a gauze pad from the first aide bucket and applied pressure.

I'm convinced that the chickens are trying to haunt me. I tried to convince my 14 year old that he could finish the job. It didn’t quite work. I called Josh who was at work and couldn’t leave. Then we tried our home teacher who was at football camp which is where my oldest needed to be. Josh texted another friend who headed over to finish the job. Glenn did an excellent job finishing up that bird and taking care of #5. I’d hate for the poor thing to have been left out of all the fun.

I called my mom to ask if she’d mind driving me to the nearest ER (45 miles away – the other way is about sixes with the construction). She arranged for a sitter for my kiddos and away we went! The hospital in Kemmerer got us in and looked at my finger.  I filleted the first  knuckle of the pointer finger on my left hand.

“How did this happen?”

“I was shaving? No, really, I was butchering chickens.”

“Did you bring the piece you cut off?”

“Ummm. No. I couldn’t really tell which piece was chicken and which piece was me. I didn’t want to chance growing feathers.”

There was much laughter and sarcasm. If it didn’t hurt, it would have been much funnier. Several shots of lidocaine later, my finger was numb enough to scrub. OUCH! Just kidding! It wasn’t really that numb. The sweet doctor numbed it again and again and again. Then she started cauterizing. Again, OUCH! And it was still bleeding. Really? I bleed really well – in fact, I got an A+ in blood! ;) She cauterized at least twice. Now it’s wrapped really well and I look like I have ET fingers. It’s AWESOME! (I'm tempted to put LED lights in the bandage)

If you’re gonna hurt yourself, do a good job of it! There’s no nerve damage that we can tell. It’s a really clean cut (thank goodness for really sharp knives). As of midnight, it’s still quite numb but it’s starting to throb. I’m already imagining the fun I can have trying to get chores done.   :P

Medical Monday

Jaydon is feeling better by leaps & bounds. He has been attempting to take the state-mandated PAWS tests a section at a time. His proctors have been great. He gets super tired really fast. Today, he started going to school for 2 hours at a time again. We'll see how far he gets with the testing. The last day for the testing window is Wednesday.

Our next appointment has been scheduled. I'm both looking forward to it and dreading it. We are scheduled for a cystogram. Apparently, they pump his bladder full of dye and take x-rays. I'm hoping they use the catheters that are already in place. Then we'll go to the doctor's office to get some catheter training.

As for me and the baby, we're getting better. Bronchial things are a little hard to get rid of sometimes. We are making improvements with the help of a vaporizer.

In the writing department, things are at somewhat of a standstill because I've lost the disc and keycode for Microsoft Office. Since I had to take my computer back to factory settings, I have to re-install the software. Oh schwell I guess. I'll find it eventually.

Trying to keep everything short, sweet and to the point today. Family night is about to begin.

Book Review ~ Not My Kid… by Mary Billiter

Book Review ~ Not My Kid… by Mary Billiter

Mary Billiter had been one of the key people that fueled the fire of writing in me. She is an amazing person-quite an inspiration.  It took quite a while for me to purchase this book. Finances have been tight for several months and I couldn’t justify the price (not that its expensive, we were just cutting out all the little things). I finally managed to get some Amazon gift cards and made my purchase. I couldn’t wait to get my hands on the prize. Everything I had heard about the book was positive. When the package finally came, I opened it right there in the post office. Here is the “blurb” about the book…

Megan Reilly is a newly divorced single mom trying to raise two sons. She is also an ambitious journalist covering a story about bomb threats at her son s middle school. After her thirteen-year-old, Cameron, is arrested for shoplifting, he becomes the prime suspect in Megan's big story. Her response is, "Not my kid." As the case against Cameron builds, even the man who loves Megan thinks the boy deserves to be put away. But the authorities haven't bargained on the fierce power of Megan's maternal devotion.

I scraped every morsel of time I could find, picking up the book and reading. Almost every chapter brings a different point of view. I love how Mary did this. This book really grabbed me. I could connect with each of her characters as I worked my way through this novel.

Mary touches on some very real issues including domestic violence, single moms trying to raise their kids, relationships – both past and present, and troubled teenagers. She painted a strikingly accurate picture. While there is some colorful language (creative adjectives I think is what they were called in high school), it is used in context and not splattered through the book unnecessarily.

I would definitely read this one again and I can’t wait for her next novel! Mary, thanks for the wonderful read!

Medical Monday

During the surgery, the OR team removed part of Jaydon’s intestine and patched it onto the bladder, making it big enough to hold about a liter of liquid. Then they removed his appendix and created a stoma through which he will be able to catheterize himself once everything has healed. Then, they discovered his urethra was closing off so they fixed that issue. He has 3 new holes in his stomach, 2 catheters (1 suprapubic and 1 in the stoma until it heals to prevent it from closing off), a 4-inch incision and various stitches all over. Poor kid was really worked over! We spent exactly a week in the hospital recovering.

We had hoped we could go home Sunday-crossing our fingers but not holding our breath. The doctors had hinted Friday night, Saturday or Sunday. Aunts, cousins, Grandma, Grandpa and all his siblings came to visit and to play in the Forever Young Zone on Saturday. Did you know 13 people fit in one hospital room? Jaydon was really worn out and in all the commotion, we (all of us) had forgotten about pain meds-he seemed to be fine. We discovered Jaydon doesn’t complain about pain until it is overwhelming. He started throwing up Saturday night. As a result we got to spend Sunday in the hospital. The branch president happens to be related to one of Jay’s parent’s neighbors in Montpelier and he knew several of Jay’s aunts and uncles. Small world, huh?

We have been home from the hospital for about a week. Jaydon has been doing well except for the fact that I can’t seem to get him to eat. I have heard that going under anesthesia can cause strange side effects with taste buds. My mom finally got him to eat on Friday by offering him a variety of things like pizza bites, hotdogs and apples. We think he over ate because that night, he started throwing up. Poor kid wasn’t even able to keep pain pills down. At any rate, he fell asleep around 5. Sometime after 7, I woke him and told him he needed to come out and TRY to drink at least a little bit. He groaned and rolled over. I tried again. He pulled the blanket over his head. I leaned my hip against the doorjamb, folded my arms and said “Here’s the deal. You can either come out and drink some Gatorade OR I’ll drag you to the car and take you to the nearest hospital and have them put in an IV.” He practically flew out of bed and down the hall. I almost had to take the Gatorade away to keep him from drinking it too fast. Silly boy. I’m here to tell you, kids bounce! Sunday, he was up and moving like he hadn’t been hugging the pink bucket all day. He seems to be doing fine.

Mom caught a cold. My wonderful children shared it with me. Because being the primary care-giver 24/7 is so draining, I'm not doing entirely well. I'm starting to feel better, not so much like I've been run over by a truck now. The Relief Society has been wonderfully supportive. I was able to attend a writing chat online with Ali Cross Thursday and the ladies were amazingly supportive and made me feel like I have accomplished A LOT when I actually feel like I'm dropping the balls I'm trying to juggle. I can't do it all and what I can do at the moment needs to be enough.

Thanks to everyone for all your prayers, thoughts, smiles and support! I couldn't do this without you!

Sunday Smidgen

Writing has been slow because medical issues are completely draining - emotionally, physically, mentally, creatively - you get the picture. Its no wonder that I have come down with every sneeze, sniffle and cough my kids are bringing home from school and so lovingly sharing. I have been unable to focus on one WIP (work-in-progress); instead, I have been jotting down whatever comes to mind and fitting it in where it best fits. I managed to hand-write about 6 pages of a scene waiting for PeeWee Wrestling to begin. Here it is. Any comments, suggestions, hints, and/or tips are greatly appreciated. Enjoy!

Bethany groaned in frustration as the doorbell rang. “Grand Central Station,” she muttered as she stepped over the toys scattered through the living room. “What now?”

The doorbell rang again. “Hold your horses. I’m coming.”

She paused briefly to toss some dirty socks in the direction of the laundry room. “The bin is ten feet from the door. You’d think they could at least make it that far.”

The doorbell rang again just as she pulled the door open. “Really? Didn’t your mother teach you patience?” she asked before her mind registered the policeman standing in front of her. “Oh. Um. Can I help you?”

“Ma’am. We’ve gotten a report of vandalism.”

“Really? We just got home. I haven’t noticed anything.” Bethany glanced around the yard, searching for damage.

“No, Ma’am. Not your property. The complaintant mentioned that your kids were involved.”

“Excuse me?” Bethany closed the door against her thigh, sandwiching herself between it and the doorjamb as if trying to block the officer out of her life.

He handed her a packet of papers. “We believe your boys were involved because of the descriptions given at the scene.”

Bethany scanned the paperwork, her eyes zeroing in on the date. “Today? This says the incident happened today. It couldn’t have been my boys…”

“Ma’am, everyone says that. The court date is on the paperwork. Please make sure you and the boys are there on time so we can proceed quickly and decide what type of punishment is necessary.”

“We just got home from Logan. There’s no way my kids were involved.”

“I’m guessing you have fabricated evidence to support this?” he smirked.

“Fabricated? What happened to innocent until proven guilty and all that?”

The officer leaned forward and pointed to the date circled in yellow highlighter. “Here’s the date. Thank you for your time.” He turned and stalked off her cluttered porch.

Could this day get any worse? She thought as she watched the squad car back out of her driveway before she closed the door. Her fists tightened, squishing the summons. Moving through the living room, she kicked the toys out of the way before slumping into the recliner. She shrieked in alarm and leapt out of the seat, then turned and looked for the offending toy that had jabbed her backside. “Stupid Transformers.” Frustrated, she pitched the toy into the toybox as she sank into the plush softness.

Tears blurred her vision as she reviewed the crimpled pages. The incident happened this morning well after they had left for Logan. Her children were named as possible participants but the neighbor hadn’t been positive of their identities because he had only seen their backs as they retreated down the alley.

Bethany breathed a sigh of relief, knowing that the dentist would make a statement on her behalf. She also had all her receipts and could get her bank to print out a statement. She vividly recalled the policeman’s words, harshly indicating that her kids were definitely to blame. She would do everything in her power to help her kids avoid the bogus charges.

She believed the police were “gunning” for her kids. The boys had been in the proverbial wrong place at the wrong time. The real culprits had been the Stake President’s twins and the Relief Society President’s oldest son. No one had believed her kids at the time and when the sentence had been handed down, her boys had endured the punishment without complaint.

The real hurt had happened when the Stake President had visited their ward and had called her family to repentance citing the quote by David O. McKay. She recalled his words vividly.

“David O McKay tells us ‘No success can compensate for failure in the home’. I tell you this, A mother’s place is in the home. Do everything in your power to remain in the home where your children need you the most. Children need to be nurtured and a mother cannot do this in the workplace.”

Holding her head high, she had ignored the condescending glares. Tears flowed down her cheeks just as they had that day. Sliding from the chair and onto her knees, she poured her heart out to her Heavenly Father begging for his comfort and help.

An overwhelming feeling of warmth filled her, comforting and buoying up her spirits. Rising to her feet, she attacked the cluttered living room with a vengeance as she created a defense plan. Within minutes, the clutter disappeared replaced by calm and order.

Have a happy Sunday!

Indies Unlimited Flash Fiction Voting

Voting has commenced on Week 10 of the Indies Unlimited Flash Fiction Contest. There are 15 entries and are all quite interesting. Please go here and vote for your favorite! My entry is #10 by Steph in WY. Happy reading!

The QUICK Surgery - Thereby Avoiding Worry (I think)

I’ve started this blog post several times. Since I don’t know the ending, I don’t know how to word the beginning. Here goes... It all started when (insert waving fingers here easing us into the correct scene)

I crawled back into bed after having a rough, almost sleepless night. The kids were on the bus and I was looking forward to several hours of rest, relaxation and quite possibly some much needed sleep. My darling daughter woke up, so I fed and changed her. Then we snuggled under the warm blankets, inviting sleep to overcome us.

Music filled the silence as my phone announced the incoming call. Sure, I was waiting for this call to tell me when my son’s surgery would be, but I was expecting it much later in the day. Eight A.M. is an uncool time for a phone call.

“Hello?”

“Hi! This is the nurse with Urology. We have an opening for surgery tomorrow. Can you be here in an hour?”

“Um. No. It takes at least 3 hours to get there from my house. Is this a joke?”

“Can you come today?”

“Well, I guess,” I hedged. “My husband just went back to work yesterday.”

“Oh. Well, I can TRY to get you scheduled for next week, but that won’t be a “sure thing”. The soonest we can be sure about a surgery after tomorrow isn’t until mid-April.” The keyboard was clicking ferociously through the phone lines as she searched the schedules.

“If you put it that way, schedule it.”

“Great! See you soon!”

And away we went! I ran around the house like a chicken with her head cut off for several minutes, tossing clothes in the bags, into the washer, dragging clothes back out of the washer, loading the car, waking up kids, throwing them into clothes then hustling them out the door and into the car. The roads were great, the drive beautiful. During all this, I was talking, texting, facebooking, and IMing and trying to get a hold of Jay.

We arrived in SLC and dropped the kiddos off at my sister’s house then headed up the hill to the hospital. I hadn’t received clear instructions other than to COME. First, they sent us to Same Day Surgery. They weren’t expecting us so they called around to see where we were supposed to be. Then they sent us downstairs to Admitting. We got the paperwork all squared away and went to the Children’s Surgical Unit. Interestingly, someone screwed up Jaydon’s birthday & age. They thought they were admitting a 1 year old instead of a 10 year old so we were put in NICU. They scrambled around for a bit and finally moved us to the M Pod where we waited for several more hours before the chaos began.

An IV and an NG tube were placed; I’m not sure which was worse. They started pumping him full of bowel prep fluids – and we waited. And waited. And waited. Finally, everything started happening. This poor kid has been through the ringer. The nurse waited for Jay to get to the hospital before starting the next phase of the prep work. At about 2am, I hit the wall. I’m so glad Jay was here to pick up the pieces that I dropped. I crashed hard & slept through the hourly procedures & the 6am lab visit. 

At any rate, Jaydon is in surgery. We are about 2 hours into a 6 hour surgery. The nurse has reported that he’s doing well. An epidural was placed to help with the pain & discomfort following the surgery. Thank you for all your prayers! I have been surprisingly calm all day. Your prayers on our behalf are such a comfort and a blessing.

Flash Fiction Entry - Indies Unlimited

I decided that I had such fun with the last Flash Fiction piece I wrote that I'd try again. I've never been good with short stories because I want to paint a bigger picture. These pieces are quite fun.  This week's contest at Indies Unlimited caught my eye. I've always loved westerns. There's something about the Wild West that creates intrigue. Here's this week's piece -

Metal grated against metal as Engine 4003 shrieked to a halt. The bell tolled creating an almost dissonant harmony. Thick, black smoke filled the air as the engine coughed its annoyance at being stopped prematurely. Two dirty faces peered out the open doorway at the track laid out in front of them. The men disembarked the train and cautiously approached the body.

The bloated corpse was lying facedown between the tracks. Both men pulled their bandanas over their noses to try to block out the stench. A swarm of flies rose into the air like a black tornado as Ben, the engineer, toed the body with his boot, rolling it over.

The pair blanched as they recognized cattle baron Ted Trillert.

“Wonder how he got clear out here.”

Dennis shrugged. “Dunno. We can’t just leave ‘im here.”

Ben gagged. “I ain’t touching him. We can tell the Marshall where he is when we get back ta town.”

“Help me put him on the train.”

“Where’s he gonna ride? No one wants that stink in the same car as them. Just roll him outta the way and lets get a move on.”

Dennis blanched as he grabbed the dead man’s shirt and rolled him from the tracks. He bolted upright and turned to run back to the train as a bullet ricocheted past his head. He skidded to a halt realizing they were surrounded by mounted men.

“Thanks for stopping this here train. We’ll be taking the payroll from here.”

You can visit Indies Unlimited here to read the other entries & vote for your favorite (obviously mine) on Wednesday. Hope everyone is having a great day!

Surgery Details - NO date yet

Friday wasn’t entirely horrible until around 5pm. Jaydon’s doctor called to discuss the next surgery. We had a nice little chat about Jaydon, how he’s taking everything and how we feel he will do moving forward. Honestly, Jaydon is getting cabin fever as I said in my last post. He’s already telling people what will be happening next. The doctor said he felt that they needed to do the more indepth surgery because of the extreme urine output we are consistently seeing.

What this means is the day before the surgery, we will go in and Jaydon will get a GI tube. The tube will help pump liquid through & clean out his intestines. The surgery itself will be approximately 6 hours. They will be removing part of his intestine to augment his bladder (make bigger). They will also take either another part of his intestine or part of his appendix to create a shunt, tube, or stoma. This will be used as a catheter path so that Jaydon can catheterize himself.

Following the surgery, we will be in the hospital for at least 4 days. The average is 4-10 days with an average of 7.

Obviously, with 5 kids, creatures, jobs and a myriad of other things going on, this is not an ideal situation. I have some ideas that should make creature care easier. It’s just a matter of getting everything implemented before the surgery. Although we don’t have a date as of yet, we SHOULD have more information sometime this week.

An Update - Or Not...

I have been in a writer’s funk lately. This kinda-sorta means that I have been unable, unwilling, or otherwise avoiding updating my blog (and my relatives for that matter). My mother, mother-in-law, siblings, various cousins and friends have brought this mostly unintentional oversight to my attention.

The news today is *** (pause for effect) *** there is NO news. We’re still waiting for the doctors to call us back and let us know what’s going to be happening. A lot hinges on the labs that were drawn today and how the 4-hour clamping is going. The 4-hour clamping involves turning a valve in the catheter tube so that the bladder gets used to being used again. Every 4 hours, the valve is opened and the bladder is drained again. It is irritating being strapped to a timer. I’m not really that good with schedules that don’t line up “just right” and I can never seem to get them to line up because - Life Happens.

Jaydon is doing well. His spirits are up for the most part. He’s really frustrated that he can’t go to school. He wants to learn to snowboard. He wants to go to swimming lessons. He wants to be involved. He wants to be a normal kid. He hardly ever asks “Why? Why me? Why this? Why now?” He mostly takes it all in stride and attempts to make the most of it.

It’s hard for me to watch him. With the cold weather setting in again (we had a warm stretch for a few days where it got above 35 degrees), everyone is getting cabin fever. I’ve gotten to the point of needing a break, a creative outlet. I’m going crazy here!

I signed up for a PEG Workshop. It is gonna be AWESOME! Authors of all abilities get together for a small group editing session. We basically have “girl time”, reading and critiquing each other’s work. A published author or professional editor is in each group. The feedback you receive at these workshops is invaluable! Jay swears I didn’t tell him about the conference on purpose citing the oft used phrase “It’s easier to ask for forgiveness than for permission.” I swear I told him about it. I had even arranged for a sitter over 3 weeks ago. I dunno – selective memory? I even promised NOT to go to Cabelas without him. If you know me, you know that this is BIG. I offered to let him come & spend the day trapped in a library with a bunch of women. He just rolled his eyes and shook his head.

In other news - I entered the first 2 chapters of Crossing Stars into a contest sponsored by East India Press and David Farland. Today was the deadline although no time was posted on any website I looked at. It was sent in before midnight MST, so here’s hoping it got there in time. I also forgot to change the word count on the cover sheet. It started with approximately 950 words and ended with just over 2100 words. OOPS! Hopefully, the judges will understand my mommy-brain-moment. I realized the error just after I hit SEND.   RATS!

More on Writing - Part of gearing up for the LDS StoryMakers Conference in May is “March-A-Thon”. It’s similar to NaNoWriMo (National Novel Writing Month) in that goals are set, writers get together in designated chat rooms to help, encourage, and basically “egg” each other on. We are the best cheering section for ourselves!

Breathing Deep! Spring is in the air! Winter is attempting to keep her icy grip on the world as she sends squall after squall into our tiny mountain valley. The signs of change are small – the birds are coming back, chicken eggs are in the incubator, the goats are kidding, calves are starting to bounce around the pastures and the snow is melting and freezing-quite possibly making it even more treacherous than mid-winter. Soon, the thermometer will again start its ascent and color will again grace our world. Enough rambling, it’s time for bed. Goodnight World!

First Campaigner Challenge

A writing challenge was posted by a friend. It took several minutes for me to read the rules and decide to participate. It took quite a bit of will power to write my entry - even though it was only 200 words. It has no title yet. Here is my entry

Shadows crept across the wall as I stared across the room at the deepening darkness. The blue glow from the television soon became the only light in the room. Turning from the window, I again took in his small, cherubic face.

“How can this be happening?”  I muttered.

His attention remained focused on the movie, unaware of my inner turmoil. The routine doctor’s appointment turned into an all day nightmare as the doctors determined my son’s illness was due to Stage Four Kidney Disease.

The door creaked open as the medical staff entered once again. “Are you ready?”

Tears pricked my eyes as I shook my head. “I don’t think we’ll ever be ready. Let’s get this over with though.”

The men nodded in understanding as the procedure began. My son’s pleadings wrenched at my heart as he begged to be left alone, to go home. The proverbial dam broke as the tears flowed freely down my cheeks. I couldn’t make this hurt go away for him; I couldn’t take away his pain. My boy struggled until the medicine took effect.

My prayers flowed heavenward just as the medicine coursed through his tiny veins. Please help us overcome this trial.

For more entries, or to see the original contest, go here.  Good luck to the other entrants! Make sure you visit & read a few. Vote for your favorite!

Updates & "Official" Diagnosis

Our appointment was SUPPOSED to be Thursday. We arrived at the UofU Hospital and checked in at the lab. While we sat there, I watched the minutes on the clock tick away. With each passing minute, I grew anxious as we were drawing dangerously close to our appointment time and the labs still hadn’t been drawn. When we were ten minutes late for our appointment, one of the phlebotomists came out to talk with us and to let us know that they didn’t have the orders for Jaydon’s tests. What? I had talked to the nurse and verified THREE TIMES where we were supposed to have gone for the labs. I got on my phone and started calling the clinic. The lab’s Problem Resolution Specialist was actively working to fix the problem as well.

“You’re late for your appointment,” he said.

“No, really? The lab doesn’t have an order. Can you help?”

“Our records show that no orders have been sent since Dec 2009. Why has it been three years since we’ve seen you?”

“Um, technically, it’s been 25 months which is approximately eleven months short of the three year mark. But that’s not the issue. Can you help with the lab orders?” (Honestly, I lost the paperwork and when I tried to call, the person managing the scheduling desk was slightly less than helpful-but that’s water under the bridge).

“Oh sure. Please hold.” Insert nauseating hold music here. Again, I watched the minutes tick away as the life on my phone’s battery drained. Finally, the gentleman came back on the line. “You’re supposed to be at the PCMC lab. Why are you at the U?”

“I verified three times yesterday over the phone that THIS is where we were supposed to be.  (deep breath) Fine. We’re only 20 minutes late for the appointment. We’ll run across the bridge, down the elevators, get the labs drawn, then rush to the clinic.”

“Well, our policy is if you’re 15 minutes late for the appointment, you’ll have to reschedule. I’ll let the front desk know what’s happening for you.”

At this point, I was fighting back tears. I gathered up Jaydon’s legos and turned in the pager, explaining that we were at the wrong lab. Then I started to push the wheelchair through the crowded lobby when I hear someone calling “Ma’am! Please, wait!” Normally, when this happens I don’t even turn around, assuming they mean someone else but that time I did. One of the phlebotomists came running after us. “We have the order! You’re up next.” Gratefully, we turned around and headed back to the lab. Becky Mellor is one of the best phlebotomists working at ARUP. She draws blood on the PICU babies. She decided she could draw for Jaydon. She did such a great job that no one had to hold him down AND he didn’t scream. That is a minor miracle!! Thanks to all the primary children & teachers from our ward who were praying that his labs (and appointments) would go well.

We rushed to the elevators and down to the clinic. The secretary smiled her sickly sweet smile and told me she’d be right back. When she returned, she said “Take a deep, cleansing breath.” At this point I rolled my eyes, knowing there was bad news; we were only an hour late for the stupid appointment. “Unfortunately, the doctor is totally booked today and can’t see you. Not to mention that the lab results won’t be available until at least late afternoon. Let me call the scheduling desk to see when we can reschedule you for.”

I felt like I had been kicked in the jaw. We had made arrangements for the two kids in school to spend the night, driven for three hours in a blizzard and freezing rain, imposed on my sister’s hospitality, braved the traffic in SLC just after a storm (taking your life in your hands there) and you’re telling me we have to reschedule?! NOT COOL! The secretary sat stoically as I listened to the spiel from the scheduling desk. Then the dreaded words, “The first opening we have isn’t until January 31^st.”

At this point, I was in tears and pleaded my case. “We will go to whatever clinic we need to. We’ll sit there until the very last appointment if we have to. We can spend the night and camp out at a clinic tomorrow on the off chance that we can be squeezed in somewhere. Please find something. Please don’t tell me that I drove three hours just to get labs drawn.”

The keyboard clicked through the line and I was put on hold as the woman searched. The secretary got up and whispered that she’d be right back. She was gone only for a few minutes. When she returned, she asked for the phone which I relinquished. She said both into the phone and to me, “The doctor can see Jaydon tomorrow at 2 here in the Transplant Clinic. We’ll squeeze him in.” Further instructions were given and waves of relief washed over me. I gathered up our belongings and wheeled away.

After my sister, Nicole, finished her classes, we decided to leave the older boys with her husband, Jeff. We took the two babies and went out for ice cream. I had made arrangements for some 4H rabbits to be picked up and delivered to her house. We ended up with a beautiful family of French Lops and a pair of chocolate colored Rex Rabbits. They are beautiful and have great body tone. I can’t believe they were free! And... back to the important things…

We spent another night at Nicole’s house. We left an hour early for our appointment, determined not to miss it this time. It only takes about five minutes to get to the U from her house. We had barely walked into the office when they called Jaydon back. He was determined to wheel himself around. He didn’t give himself enough clearance through the doorway and mashed his knuckles. The nurses all jumped in to get him bandaged up. I think he hammed it up a bit – just sayin’.

The dietician came in to discuss our options. Jaydon was trying to get me to buy pizza so that’s the only food he told her he ate. I managed to convince her that we didn’t eat pizza all the time, but only barely. Jaydon sure is a character! According to the labs, Jaydon is a bit anemic so he gets to take iron supplements. He isn’t on any dietary restrictions yet, but we need to watch his protein intake. The dietician also gave us some recipes for low protein, kidney friendly shakes. Most of these are made with liquid coffee creamers. I bought several different flavors on the way home. Jay’s reaction was, “Who started drinking coffee? It looks like a coffee house in here.”

The doctor came in to talk to us. Two years ago, Jaydon’s kidney function was just below 50%. The labs just after Christmas indicated he was down to 20%. After the Foley was in, function jumped back up to 30%. Yesterday, the labs indicated function was down around 25%. All the other labs and markers look really good, but his creatinine levels are still quite high. The good news is that the high levels may be because he was really sick on Monday and Tuesday. The doctor feels that he is/was probably a bit dehydrated. We will really be pushing fluids to keep him hydrated and to keep the fluids pushing through his little system to flush out the toxins.

The bad news, Jaydon’s current diagnosis is Chronic Kidney Disease (CKD) Stage 4 resulting in Anemia. CKD inhibits children’s growth, bone density, ability to create red blood cells, ability to transfer Vitamin D into a useable substance, and makes a person extremely tired. The doctor, while really friendly and great about answering questions, doesn’t have answers. We are still running on doctor time in that we don’t have enough information to determine the best course of action. We will be re-running the labs in a month and will be back with Nephrology (kidney specialists) in three months unless the labs look odd. We have been told that we will be doing dialysis and probably a transplant, but we don’t know when.  This isn’t new news, we’ve been aware of this possibility since Jaydon was two.

No, we’re not on a transplant list yet.

No, we don’t know when the next surgery will be.

No, we don’t know what’s happening in the near or far future.

Am I keeping my head above water? Most days. Sometimes, I have a straw and am learning how to snorkel. Other times, I’m diving deep and looking for my scuba equipment. I’m relying heavily on my family, friends and God.

Surgery & Test Details

What a roller coaster! We left early in the morning and fed on the way out of town. Almost instantly, I worried about one of the girls who seemed to be in labor – Really? It was 5 below! There was nothing I could do, so I decided to let nature take its course. AND… Nothing happened.

We were early getting to PCMC. We got all checked in and were taken to Pre-Op. Jaydon and Jay sat down and played with the Xbox. It was HILARIOUS! Jaydon kept hitting Jay’s shoulder “Stop it Dad!” and “Dad, you’re in my way!” I just sat there and chuckled.

The anesthiologists came to get Jaydon. He did great until they went through “the doors”. Then, he panicked. Poor kid. Jay and I went to eat lunch in the cafeteria. My sister Angi was waiting for us when we got back upstairs. She sat with us and we chatted while we waited for the phone call. The call came and I went into PACU. Jaydon was crying for mom. My heart melted. When I leaned over his  bed, he gave me an awkward hug and started screaming for his dad. Only one parent is allowed in PACU. Poor kiddo!  We spent about 30 minutes in PACU before being moved into PostOp. Jay was able to meet us. Jaydon clung to his dad’s hand. He was crying and telling his dad how much he loved him. He was in a huge amount of pain. After the Lortab kicked in, he relaxed and fell asleep. Jay was also able to catch a few winks.

We spent about 2 hours in the PostOp unit waiting for our 3 o’clock appointment for the CMG test. All the tests were completed and we got several questions answered. A normal bladder looks a lot like a balloon. It should be smooth and stretchy. Jaydon’s looks like and has the texture of crocodile skin. It is hard and lumpy. We also were able to determine that the sphyncter is what is causing the issues. His are too tight. They aren’t receiving the correct signals from the brain making it nearly impossible for him to relieve himself (either way) without some sort of assistance. It was determined that he will need some sort of assistance emptying his bladder for the rest of his life.

There was no reflux of the dye from the CMG into the kidney. That indicates that the valves and tubes(ureters) are functioning correctly. His kidney looks good but not great. We are still looking at a kidney transplant, but it won’t be happening “soon”. We are meeting with Nephrology (the kidney specialists) on Thursday. The next surgery will be sooner rather than later, but we don’t have a date yet. We’re still operating on “doctor time”. This surgery will involve creating a channel or a path into his bladder.

We’d like to thank everyone for their thoughts and prayers and kind deeds. The outpouring of support has been awesome and means so much to us as a family.

Minor Surgery Scheduled for Tomorrow...

Well, we officially have our times for tomorrow.  We check in at PCMC at 10:30 in Same Day Surgery.  Depending on the surgeries before us, he’ll be taken back for the scope & catheter placement at around noon. This procedure is scheduled to last around 30 minutes. Then, we’ll meet up again in recovery where we’ll hang out for a few hours. At 3, we’ll go to the testing room for the CMG (bladder function test). That test lasts about an hour.

At this point, it looks like we SHOULD be done with everything by 4ish. We’ll see how Jaydon is feeling at that point. We may decide to spend the night in Salt Lake. Our stay may also be dependant on how many errands need to be done.

This round is relatively simple. The more indepth things start happening a little later. We really appreciate all the thoughts and prayers from everyone.

** We'll be traveling to SLC every week for the foreseeable future. It takes a minimum of $100 per trip just in travel expenses. This is putting a strain on our finances. We're not starving, we're just juggling. If you could possibly spare a dollar or two, we would be most grateful. Thanks to those of you who have already donated. It has helped quite a bit - more than you know! **

Mean Monster Mommy Moments

The past two weeks have been full of Mean Mommy Monster Moments starting with taking my child to the doctor for a “routine” checkup. Several of these Mean Mommy Monster Moments included when I got to hold down a very strong 10 year old so that labs could be drawn, procedures could be completed, etc. I’ve also had more Mean Mommy Monster Moments when I’ve had to “encourage” this 10 year old to take the disgusting meds or I’d be forced to “help” him take them.

For the most part, he’s been really good about taking his meds, doing his school work, drinking more liquid than I care to measure, emptying his own cath bag and much more. Jaydon has had a rough week this week because he’s had to miss school (another Mean Mommy Monster Moment). He really, truly LOVES school and has been extremely excited when the aide comes to tutor him.

This morning dawned with yet another Mean Mommy Monster Moment. Jaydon woke up to tell me that is hip hurt really bad. He was even walking like an old man, hunched over and shuffling. I'm sure the hip pain came from overcompensating muscles as he limped along. I'm also fairly positive this limping has aggravated the scoliosis in his back. He has had good days and bad days and yesterday, we noticed that he was limping more than usual and seemed to be in pain. When questioned, he’d deny any sort of pain. When he woke up, I herded him toward the shower and helped him get in. He balked and insisted he didn’t need a shower. I’m of the firm belief that a lot of problems can be fixed by spending time relaxing with hot water beating the problems out of your muscles or by sitting in a tub with the hot water (and possibly bubbles) soothing aching muscles with gentle waves.

I almost immediately found one source of pain as the catheter tubing had inched down his leg to the point where it was pulling quite a lot. The tube isn’t fastened with medical tape. We are using CoBand or VetWrap because of the laxatives that are in use. The medical team had decided that this option was the best due to the hygiene issue and I totally agree (suppressing a shudder at the thought of the other way).

Jaydon used up quite a lot of the hot water. After he was dressed, I insisted on him completing the chiropractic exercises even though his hip hurt. **Insert whining, crying, weeping and wailing here *** Again, the Mean Mommy Monster reared its ugly head and had its Moment by saying, "I don’t care if it hurts! You’ll feel better after you’re done!" Wouldn’t you know it? He did feel better and is now walking almost normally through the house. 

I hate having to play the Mean Mommy Monster, but knowing that these Moments are helping my children grow or feel better tend to ease my distain for them. I’m grateful for the times in my life in which I’ve needed to be tough in order to get through them. I’m sure there will be many more such Moments in the months and years to come. I’m thankful that kids forgive so easily and forget – for the most part – that a Mean Mommy Monster resides at our home.

Post-Appointment Update

Medical Update –  We were a little late getting to the hospital yesterday. We got hung up in Outpatient Registration because only one lady was on duty. THEN, the lab didn’t have orders for us. GRRR! We hustled down to Medical Imaging (Jaydon decided he needed a wheelchair because the catheter was pulling funny). I must have put my phone down on a chair while I was helping Jaydon or when I was calling Urology about the labs. We got called back for the ultrasound and in the little room, I discovered the missing phone. After searching through the bag, I went back to the waiting room and found a sweet little child playing a game. I had to break his heart while I took my phone back. Poor kid!

We have truly seen one of God's miracles this week! The ultrasound looked GREAT! I was amazed at the difference. The radiologist was even astounded at the immense change! Last week, the kidney tissue was compressed into nothingness (almost). Yesterday, there was visible tissue almost throughout the entire kidney! I was almost doing “the happy dance” as demonstrated by Snoopy on the Peanuts cartoons. 

We drove the wheelchair back to the lab and had a struggle there. You’d never guess Jaydon had such strong arms! He fought like a tiger, but in the end (with 3 of us working together) the labs were drawn.

In Urology, we met with our regular doctor; last week we had the Nurse Practicioner (who is wonderful). Dr. Cartwright is one of the best Urologists in the nation! He explained everything to us, talked specifically with Jaydon, and complimented us on how well Jaydon was doing and adjusting to the catheter. The lab results show that the creatnine levels dropped from 2.4 to about 1.3!  This is still quite high, but Dr. Cartwright is hopeful that the levels will continue to drop. Apparently, the issue is with the bladder, not so much with the one remaining kidney. This is a very good thing! We may still be able to delay the inevitable transplant until well into his teenage years and hopefully after most of his growth spurts.

We will be doing a minor surgery on Friday next week. We need to see how bad the bladder is and what its capability is. During the scope, they will be placing a Suprapubic Catheter to facilitate drainage until we can do a more indepth surgery. Jaydon has had one of these catheters in the past, so I’m slightly familiar with them. The tube will be placed through the skin on his stomach directly into the bladder. Like a Foley Catheter, it will be held in place by a balloon. It will also drain into a bag. The up-side is that it is FAR less uncomfortable than a regular catheter and will allow him to be slightly more active. All this will be done under sedation – in other words, he will be asleep. I only wish they would put me out at the same time! I think I might be able to get some rest! When Jaydon comes out of sedation, he will be taken in for another test that tests the amount of pressure within the bladder. We won’t know until next Thursday afternoon what time we’ll need to be there.

The school has made accommodations for Jaydon to be homeschooled. We are having a bit of a learning curve on how to get everything done, but it will come together. Either he or I receive phone calls almost daily to see how everything is going and how he's feeling. 

I’m very grateful for everyone who participated in the fast or prayed for Jaydon! I have truly seen God’s hand in everything we have done this week! The wonderful ward angels provided some much welcome help yesterday and my visiting teachers created an excellent meal. Thank you to everyone for everything! Your support and love truly has been felt across the miles!

Yet Another Update

Medical Update – Things are moving! YAY! So much so that I’m not going into details because some of you may be eating. What are you thinking? Eating by your computer is not good news! You might spill milk, or get crumbs in the keyboard, or something. Anyway! Jaydon is doing well today. He’s up and walking around and is taking a shower. In a few minutes, he’ll be dressed. He’s doing better than me this morning!

Family Update – The other boys are happy for another day away from school. They don’t start back until tomorrow. Macady is happily playing with her dad. Jay didn’t sleep much last night which means he’ll be sleeping pretty much all day so he can go back to work later today. Me – I’m still hanging in there. I’m holding it together for the most part. My house is another story. I’m of the opinion that I can’t clean while the kids are home.

Writing Update – I signed up for a writing challenge with Tristi Pinkston. Her challenges are fairly flexible in that she’s a mom also and understands when life happens. My goal is also fairly flexible taking into account for the days where I’ll be at the hospital with Jaydon. My plan is to write 1,000 words per day OR edit a chapter of A Little Push To Happiness. Last night, I was able to sprint with Lisa Asanuma. She let me vent and gave me a cyber hug and all was well in my world. I’m very grateful to her for helping to light the fire under my couch and get me writing again. I need creative outlets.

I’m very grateful for those who participated in the Fast & Pray for Jaydon event on facebook. Your prayers were felt as if strong, warm arms enfolded me in their loving circle. The many emails, texts and phone calls are also very much appreciated.