My Life with Zane

The Daily Beast

2012-02-01T09:18:00.000-07:00

Our Trisomy 18 journey appears today in Newsweek's online publication, The Daily Beast.

There's a First Time for Everything

2012-01-31T07:50:00.000-07:00

There certainly are drawbacks to having a child who is non-verbal. Especially when he’s sick. That’s why it’s critical to be able to pay attention to his other ways of communicating. Like poking his ears. Zane has been sticking a finger in his right ear for the past couple of days. To us, this could mean one of two things: 1) he’s playing with his hearing aid or the place where it’s supposed to be for self-stimulation of exploration, or 2) he has an ear ache. Since Zane has not had a single ear infection in five years, we assumed the former. We were wrong. To be on the safe side, we took him to the pediatrician yesterday. Sure enough, he has a secondary infection to accompany his now 12-day-old cold. Zane can now claim an ear infection—in both ears—on his medical resume. He’s staying home from school to rest, take his antibiotics, and load up on Pedialyte and probiotics. He should be feeling well within 48 hours.

Puppies

2012-01-13T09:23:00.000-07:00

At school yesterday, Zane held and pet an English Bulldog puppy. He loved it, as you can tell by the photo. One of the mothers brought five pups in for her child's share day. Thank you to Zane's teachers for capturing the picture.

The Most Miserable Place on Earth

2012-01-06T15:34:00.000-07:00

I had high hopes for the Magic Kingdom. I really did. But the reality tied to expectations is predictably unpredictable. As part of Zane’s fifth birthday celebration, I arranged for all of us to go the Orlando, mainly with the idea of visiting Disney World. More than anything, I wanted Zane to experience the Main Street Electrical Parade and the fireworks—both things I knew he would enjoy.

While Downtown Disney was fun, albeit crowded, the same cannot be said for Casa de Mickey. Because there, it was jam-packed, too. Except the jam-pack-ed-ness took away from the fun. Despite Zane having a free pass to go to the front of the line on most attractions, he only visited three of them: Monsters, Inc. Laugh Floor (where, in fact, he did crack up); the Mad Tea Party (glorified, spinning tea cups), which he was both hot and cold on; and the Haunted Mansion (he wasn’t impressed).

A lot of the morning was spent doing the following things: riding the bus to the park, navigating the crowds, changing diapers, and hooking up his g-tube feed. By the time the three above-listed attractions were over, so was Zane. Jeff took him back to the hotel around 3:00, and I didn’t see him again until nearly bed time. No light parade. No fireworks. Goodbye expectations.

My dad, Justin, and I stayed in the park into the evening, but endured some pretty long lines. The Christmas lights and the fake, falling snow on Main Street were pretty impressive. But even we cut out early. Space Mountain had an 85-minute wait, and people were setting up residence on Main Street at 6:30 for the parade. Zane would have been stuck behind the big-headed man. I just know it. So…lesson learned.

To Disney’s credit, the Magic Kingdom treated Zane and our family well. The shuttle drivers were wonderful! They gave us five-star treatment. Also, there were no issues with Zane bypassing the long queues, as a long wait was something he most definitely would not have tolerated. The bottom line: It was simply too crowded during Christmastime.

So, going forward, I will keep my expectations in check. Aside from the one day, the rest of our time in Orlando and on the Disney grounds was a good experience.

Zane with Mickey ears

Happy New Year

2011-12-31T15:40:00.000-07:00

2011 has been a year of ups and downs. But perhaps that’s the way life always is.

Through his first bout with pneumonia and his first trip ever to the ER, to the loss of his Aunt Sara in April in a tragic car accident, to the anxiety of postponed surgery and his eventual trip into the operating room; Zane has ended the year healthy and strong. He celebrated his fifth birthday with the three of us and his grandparents in Florida, which was extremely special.

When Zane was born in 2006, I discovered that life is meant to be lived in the moment. There is no promise of tomorrow. 2011 reinforced that notion with the untimely death of Sara at age 36. This year I have learned that life is not about the accumulation of stuff or accomplishments or money; it is not about getting a book published or squirreling away time for myself. It is about love. Loving family, friends, and (yes) neighbors even if they do leave junk out in their yards. It is about cherishing the precious time we have with each other. Granted, we need to put food on the table and plan for the future to some degree. But I think many of us (me) grow tunnel vision when working toward goals or when viewing life as a whole.

Love and compassion. That is my lesson from 2011. I hope to carry it forward into 2012. I wish you all a happy and blessed New Year.

Florida

2011-12-30T08:46:00.000-07:00

For Zane’s fifth birthday this year, we traveled to Florida with my parents to celebrate in the place where he was born: Cape Coral/Ft. Myers. It was Zane’s first flight. We were very nervous about spending four hours in the air with him. Zane is not a big crier, but he often vocalizes. Very loudly. At times, it is impossible to quiet him down. But we were thrilled by how well he did. And he truly seemed to enjoy the experience.

We visited the hospital where Zane was born. A flood of memories returned as we drove the same route, walked through the same front doors we left behind five years ago, spied the children’s memorial we once visited, and rode the elevator to the floor that holds a wide breadth of emotions for us. But we reconnected with one of the neonatologists and three of the nurses we came to know well during Zane’s 17-day stay in the NICU: Heather, Karen, and Peggy. We loved seeing them again! They treated Zane and our family with so much respect and love that we will always cherish them. We met and chatted with them outside the family room where the news of Zane’s trisomy 18 was delivered to us. Neither Jeff nor I even ventured a peek into the room. And that was okay. Some things are better left to the past.

The trip would not have been possible without the generosity of my parents. Thank you to them for sharing the anniversary with us. Also, many thanks to my Uncle Frank for allowing us to use his vacation home in Cape Coral: the same home where we lived for a short time before and after Zane's birth.

Happy Fifth Birthday, Zane!

2011-12-22T15:59:00.000-07:00

Zane is celebrating his fifth birthday in Florida—the state where he was born. For a child who was given a prognosis of only a few months, he is most certainly doing better than expected. We’re so grateful to be able to celebrate with him! We love you, Zane!!! Happy Birthday, Zaner!

Mom Versus the Hearing Aids

2011-11-03T13:45:00.000-06:00

Day two of Zane's hearing aids.

I feel totally inept when it comes to using them. Yesterday, when the audiologist placed the aids in Zane’s ears, they remained in for 6-7 hours. Since I first put them in this morning, they have fallen out at least seven or eight times. Since they were out, I attempted to use the listening tube to test them. That proved frustrating, as well. First, I couldn’t get the listening tube to stay in. Then, I couldn’t hear any difference when I tested them. Completely frazzled, I called the audiologist. She ran through everything with me again on the phone. Her explanation sounded reasonable—doable. But when I attempted insertion and testing on my own, I was back to the same exasperating experiences.

I guess I am trying to master these hearing aids immediately. Instead, I need to learn from Zane. For him, the mastery of such things as sitting upright, standing, communicating, walking, all take patience. He has an abundance of that. Apparently, I am not as patient as he is. So my lesson from Zane is to be more gentle with myself, don’t expect to do things skillfully right away. I will keep practicing and, hopefully by next week, Zane will keep his hearing aids in for more than thirty minutes at a time.

(Pictures to come)

Can You Hear Me?

2011-11-02T16:58:00.000-06:00

As of today, Zane has hearing aids. He had the fitting this afternoon and was very cooperative. In fact, he fell asleep after the audiologist showed me how to properly insert them. Both the audiologists in Denver and here in town said that Zane’s loudness factor likely would decrease. (For anyone who may not spend time with Zane, he is often so loud he gets kicked out of family movies). Well, this afternoon, his vocalizations and intensity of sound increased. Dramatically. We’re hoping it is because he is experimenting with his voice. He kind of looks like he stepped right our of Mission Impossible. Except he is much cuter than Tom Cruise J

Along for the Ride

2011-10-20T22:28:00.000-06:00

All that worry and Zane has done remarkably well with his post-surgery recovery. Unfortunately, a nasty virus hitchhiked a ride home with Zane, and he passed it along to his brother. I will spare everyone the gruesome details that have occurred in our household over the past two nights. Needless to say, I am in dire need of some sleep, and midnight cleanup truly is not fun. This is the third trip to Denver where Zane picked up a stomach virus.

We still need to have some labs done to figure out what may be going on with Zane’s GI issues. The new formula seemed to make things worse, so I put Zane back on the soy. While he is still doing the whole gagging thing, he seems a little better again. We’ll see.

Now that the surgery is behind us and the illness is nearly out the door, we are hoping to recover some semblance of a schedule again.

We're Home

2011-10-12T20:49:00.000-06:00

Yes! We’re home. Zane was discharged late yesterday afternoon after he proved (in true Zane superhero fashion) that he was emptying his bladder okay (check), that his pain was under control (check), and that he tolerated his feeds (check). We’ve managed to do pain management without narcotics, though we do have Tylenol with codeine on hand just in case. Zane was a real trooper on the ride back, as well.

We are so very grateful to the volunteers at the downtown Denver Ronald McDonald House. They were awesome! We also appreciate the doctors, nurses, and staff at Rocky Mountain Hospital for Children. They rock! Even though everyone made our experience easy and memorable, we are grateful to be home.

Morning Update

2011-10-11T07:54:00.001-06:00

Zane had a good night last night. His oxygen saturation levels stayed in the upper 90s. The nurse alternated between an oral dose of Tylenol and IV pain medication. Zane did not need narcotics through the night. However--according to his anesthesiologist--Zane no longer has an issue with morphine or other narcotics. Back in 2007, he apparently experienced obstructive apnea from suppressed respiration after given morphine--something that is no longer an issue for him. Four years ago, he had episodes of central apnea, as well, which probably contributed to his desatting.

This morning the nurse pulled his catheter, and the doctor should be by the see him later this morning. I am incredibly impressed by Zane's urologist and with our experience at Rocky Mountain Hospital for Children. I am most impressed by our little guy who has been such an incredible trooper given everything he goes through.

Naturally, we are relieved that Zane no longer has to worry about airway obstruction during anesthesia, and we are so happy he has done so well through and after the surgery.

Thanks to everyone who offered words of encouragement and support here on the blog, on Facebook, and through phone calls & text messages.

Surgery Complete

2011-10-10T14:00:00.000-06:00

The surgeon and anesthesiologist just gave us word that surgery is complete and all seems well. Zane is now in recovery, coming out of the anesthesia. Not sure how the pain management will go; they did give him a whiff of morphine. He will be catheterized overnight. We're hoping he doesn't yank it out since he really loves to tug on tubing.

Since updates from the iPad are a little challenging, I will post more later.

Thank you for all the good thoughts and prayers.

Colorado Avalanche Game

2011-10-09T12:25:00.000-06:00

The Ronald McDonald House gave us complimentary tickets to last night’s Avalanche game. They are so wonderful here! We shared a suite with another family who is staying at the House. It was so great, but a late night for the boys—especially Zane who spent the whole time trying to fall asleep in my arms.

We didn’t make it to the museum today since the Rock ‘N Roll Marathon is happening downtown. Also, Zane needs to catch up on his sleep before surgery tomorrow. I think I do, too.

Denver, Take Two

2011-10-08T10:08:00.000-06:00

We made it to Denver on Thursday night after a very slooooow ride over Wolf Creek Pass. Throughout the whole ride out of town, we seemed to be chased by an incoming winter storm. We thought we were ahead of it until we climbed the pass at 10 mph, following vehicles ill-prepared for mountain travel in the snow. Wheels spun, trucks pulled roadside, and two-wheel-drive cars crept. But once we arrived on the other side, the weather cleared, and it was smooth sailing to Denver.

Yesterday, Zane had his appointment with the pediatric gastroenterologist. She was very thorough, questioning us about each and every aspect related to his feedings and issues associated with his stomach. When we return to town, Zane will have the same tests Justin had for his stomach issues: blood and stool samples to check for celiac and bacteria. If his labs come back normal, he will—unfortunately—have to be anesthetized again and have an endoscopy here in Denver. The doctor did state that Zane’s stomach issues may be resolved after he has his ureteral reimplantation surgery on Monday. Sometimes, children experience GI problems with kidney reflux, which I had not known.

We had planned to go to the zoo this weekend, but the weather has trumped us again. It is cold and rainy with snow in the outlying areas. Not an ideal scenario for visiting animals at the zoo. Instead, we will go to the Denver Museum of Nature and Science.

The only one who has been sleeping well since we’ve been here is Justin. Zane has had some wakeful nights. We are certain it is stomach discomfort, which hopefully will be resolved in time. For so many reasons, I will be happy to return to the Durango area: sleep, recovery, and being in a place where people accept Zane as he is. I cannot BELIEVE how many people blatantly stare at him as if they have never seen a disabled child before. We simply do not get those gawking looks in Durango and Bayfield. Those who stare won't even lift their eyes briefly to see how piercing my own glare is toward them. Come on people! I understand curiosity, but don't be rude, all right?

Surgery is still set for Monday morning.

Hitting the Road

2011-10-05T13:18:00.000-06:00

Tomorrow we’re heading to Denver, trying to avoid the incoming snow storms—the first of the season. We’re traveling earlier than anticipated because we have a Friday appointment with a GI specialist to address Zane’s vomiting/gagging issues, which returned since the formula change. Zane’s osteopath is attempting to work on the problem, as well. But the issue has been going on for months, so this is the natural next step. Hopefully, we’ll get this resolved so he can eat without episode.

Surgery is scheduled for Monday at 9:45. I will be sure to keep Zane’s blog updated. Thank you all for visiting and for the ongoing thoughts and prayers.

Surgery Rescheduled

2011-09-20T08:48:00.000-06:00

It was a good thing we canceled the surgery because Zane wound up with a cold. He had some chest congestion, which likely would have been cause for anesthesiology to turn him away in Denver. Two weeks prior to surgery, the urology office had Zane stop his elderberry syrup because it is a potential blood thinner. Justin, who kept taking his doses, stayed well; Zane got sick. Needless to say, Zane is back on the elderberry. We went full-force with nebulizer treatments of Albuterol and Pulmicort (five total per day), but have tapered it down to only two per day now. Much of that is due to the fact that Zane had an allergic reaction (we think) to the generic Pulmicort. He broke out in hives around his mouth. But, he is definitely on the mend and back to school.

Surgery has been rescheduled for October 10^th.

Thank you to everyone who offered encouraging and supportive words. They mean so very much. More than you realize!

Retarded

2011-09-14T05:00:00.001-06:00

Last week I had a discussion with Justin. He and I talked about the word "retarded", what it means, and how some people may use it as a way to demean Zane. Immediately, Justin told me he hated the word. He also told me--in a reprimanding voice--that Zane is not retarded. Of course, I fully agreed with him.

With that said, this video made me think of Justin and how he has been forced into the role of defending and being the voice for his younger brother due to the cruelty, insensitivity, and ignorance of other people.

Thank you to my friend, Sandy, for sharing this on Facebook.

Surgery Canceled

2011-09-12T10:38:00.001-06:00

All the arrangements, all the anxiety, all the preparation, and surgery has been canceled.

On Saturday night, Zane began to exhibit sick-like behavior: crankiness, sleepiness, sneezing, and nasal congestion. We put him to bed early and decided to wait until morning to see how he was.

Yesterday morning—the planned day to head to Denver—arrived. Zane still had signs of a cold coming on. I called the surgeon’s answering service and talked with the surgeon on call. He sounded a bit cranky himself at 7:30 in the morning. He told me in a clipped tone that nasal congestion is not a reason to cancel surgery…until I mentioned that Zane has both a Trisomy 18 and asthma diagnosis. Then he paused. Still, he said he and Zane’s surgeon could not make the final call. It would be up to the anesthesiologist. I didn’t have that phone number. So my mom, Zane, and I headed out, knowing we could be turned away for surgery in the morning. We stopped to have breakfast in town.

However, Zane fell asleep at the restaurant table—not a typical behavior for him at all. Normally, he is loud and happy and disruptive in restaurants. When I lifted his head, green snot dribbled from his nose. I called Zane’s amazing pediatrician—who did not have a clipped tone on Sunday morning. Did I mention she is amazing? After discussing the specifics, she believed that with Zane’s asthma he would be turned away in the morning. We canceled the surgery. I undid the numerous things I did to make the trip a go: canceled room reservations, contacted my employer about the vacation hours I didn’t need to use, ordered the antibiotic I thought Zane would not longer have to take, unpacked, and tried to shift my frame of mind out of surgery mode and back into daily routine/sick child mode.

I am exhausted.

At this point, I am not sure what will happen with Zane’s kidney surgery. I am waiting to hear from the surgeon today. Jeff and I both agree it is now best to wait for spring. Neither of us wants to drive over the passes with snow on the horizon. Zane could have surgery in October, but that would put his six-week follow-up appointment in November. Right now it is moment to moment, wait to see.

As for my mom, she is now taking a Colorado vacationJ

Thanks again for the prayers and support you have given to Zane and to us. It means everything!

Received the All-Clear

2011-09-08T12:28:00.000-06:00

Zane received the all-clear from his doctor this morning. However, she wants us to call the surgeon if he gets even the slightest hint of a runny nose. We are very fortunate to have her; she seems as protective of Zane as we are.

Because I have been a massive ball of anxiety this week over the surgery, my mom decided she will fly into Durango and drive with Zane and me to Denver. That way, I will not be alone in my waiting and worrying.

Zane’s surgery is scheduled for 7:30 am at Rocky Mountain Children's Hospital. We have to be at the hospital at 6:00am for prep. Yikes, that’s early! The surgery can range from 3-4 hours. I know I won’t be eating breakfast on Monday morning J

Thanks for keeping Zane in your thoughts and prayers.

Let the Countdown Begin

2011-09-05T20:24:00.000-06:00

We’re in countdown mode to Zane’s surgery (September 12^th). He and I will drive up to Denver on the 11^th and hopefully have a room at the Ronald McDonald House. They do not take reservations, so I have to call the day we leave to see if there is availability. The last few times we’ve been to the hospitals in Denver, we’ve had no luck getting in at either the downtown of Aurora locations L

Needless to say, I am filled with anxiety about the trip. The last time Zane had surgery, things did not go well. He coded, was reintubated, and spent a great deal of time recovering in the PICU. While the surgery itself is enough to make me nervous, the pain management issue brings with it a whole other set of anxieties. From all appearances, Zane has either an allergic reaction to or—minimally—a sensitivity to narcotics. Jeff and I always carry fears with us when it comes to Zane and illness or Zane and surgery. Things that seem like no big deal to most are huge to us. While Zane has been healthy, his diagnosis automatically carries with it the label of medical fragility. We take nothing for granted.

I plan to spend the entire time with Zane in the hospital. Word has it there is only a reclining chair in the room unlike the pull-out bed at Children’s. *sigh* But I absolutely refuse to leave him this time. So I am packing my Kindle and my comfy pillow.

Zane has an appointment with his pediatrician on Thursday to make sure he is healthy enough to undergo surgery on Monday. If she gives us the all-clear, and if he remains fever and cold-free throughout the weekend, kidney surgery will be a go. I will do my best to update everyone from Denver. I am not sure about internet access. But if technology becomes an issue, I will have Jeff post updates for me.

Please keep Zane in your thoughts and prayers in the upcoming week or two.

Mystery

2011-08-22T14:51:00.000-06:00

When Zane’s formula didn’t arrive at the beginning of last week, I decided to call the home health supply company to see where we stood on the insurance approval. I was surprised to hear he would not receive the formula as soon as I expected. Apparently, Zane’s insurance still had not approved his last order of enteral feeding supplies. In fact, when the woman called insurance, a Medicaid employee told her it would be upwards of two weeks before she had one. Of course, without an approval, home health could not ship out another order. I totally understood. If insurance denied Zane’s food, then the company would have to eat the costs. The woman I talked with was so nice. She offered suggestions for obtaining the EleCare Jr. while we waited: The Oley Foundation (didn't have the EleCare); purchasing it directly from Abbott (not realistic at almost $300 for a week and a half of meals). But it was nice of her to try to help us out.

I called the pediatrician’s office to see if we would use an over-the-counter formula in the interim, explaining our dilemma to the wonderful receptionist there. However, none of those formulas would give Zane adequate nutrition while we waited on insurance. He would have to suffer with the gagging/retching/vomiting for two more weeks. I felt so guilty giving him the soy formula, but he couldn’t not eat.

So I was pleasantly surprised when—the very next day—Zane’s shipment of EleCare Jr. arrived by UPS. I felt endless amounts of gratitude for the woman at the home health supply company, believing she worked her magic to get the shipment to us. I couldn’t wait until the next business day to call and thank her.

When she answered the phone, I thanked her endlessly for sending the formula since it had come from their facilities. “It wasn’t me,” she said. She looked up Zane’s account and told me she was still pending an approval. Shipment was still pending, as well. I called the pediatrician’s office, thinking they found a way to get the formula from the local office after hearing of our extensive wait. “It wasn’t us,” they said.

I so wanted to thank someone for helping out. But—as much as they may have wanted to—no one within the system did. I immediately thought of Zane’s Aunt Sara. She loved Zane so very much. Could it be within the realm of possibility that she had some influence over the person in the shipping department, enabling Zane to get his much-needed formula sooner than later? I don’t know. But it certainly would be just like her to do something as wonderful as that. And no one else is owning up to the shipment.

Love ya, Sara J

Test Results

2011-08-12T10:01:00.000-06:00

Zane remains an enigma—at least his symptoms and what they mean do.

His pediatrician called yesterday to say the tests all came back normal. A couple of visits ago, I asked whether or not Zane’s soy formula could be the source of his troubles; perhaps he developed an allergy or intolerance to it over time. She wanted to take one step at a time—which is totally understandable. Now that the tests shows no obvious gastrointestinal issues, she is pursuing that line of thought. She sent a prescription to Zane’s health supply company for a change in formula. The company has to obtain insurance approval, so we won’t have anything until next week. He is going to give EleCare Jr. a try. It is a hypoallergenic formula for kids who have food allergies and the symptoms Zane has exhibited. I’m looking forward to giving it a try. I sure hope it works because the next step will include seeing a GI specialist in Denver.

Keep good thought and fingers crossed, please.

If You're Having a Bad Day, Read This!

2011-08-10T14:10:00.001-06:00

I had loftly plans for myself this morning. Zane’s medical tests at the hospital (an upper GI and blood work) were going to provide me with some well-deserved reading time. With a handful of toys and my book tucked into my bag, Justin, Zane, and I headed to town.

I should have known it was going to be one of those days when the low-gas light came on during the ride to Durango. I stopped to fill up before dropping Justin off at Jeff’s workplace, making us a little on the late side for our appointment. Just a little late; no big deal.

When Zane and I rolled into the hospital parking lot, all the handicapped parking places were taken. Apparently, it didn’t matter. When I opened the back of the vehicle to pull out Zane's Kimba, I realized I had left the seating insert at home beside the dining room table where I last fed him. I grabbed the bag (with reading material, toys, and diapering materials), my purse, and Zane and headed inside.

As we registered for his procedures, I caught a whiff. Nothing significant; he just needed a simple diaper change. I asked if we could skip off to the bathroom before his tests. The woman said it would be ten minutes anyway, so we were in good shape.

Of course, life is not so simple. Once we came back to the lobby, I sat Zane in the chair beside me. He started coughing and retching—the very things he was at the hospital for anyway. I did a quick diaper check again. All was good. Until I lifted him up. There was stuff everywhere: on his legs, on his pants, on MY pants, on my hands, and even on the waiting room chair. Oh. My. God. What to do? I rushed him off to the bathroom.

Stuff truly was everywhere. The woman exiting the stall must have thought I was undertaking a Frankensteinian procedure. The protective gloves were on; the pad and incontinent care spray were wildly tossed on the changing table; Zane’s clothes were off; the bag had been dumped recklessly on the floor with extra clothing, wipes, and paper towels. What a mess! After ten minutes or so, Zane was clean as a whistle. Mom: not so much. My pants had stuff smeared all over them. As hard as I tried…the signs were evident. I had been pooped on. The smell lofted up toward my nasal passages. But the show must go on. We returned to the waiting area, where I diligently cleaned the chair amidst staring eyes, then was whisked away by a very patient and understanding hospital employee.

I apologized to her, the technicians, and to the radiologist, as well.

The upper GI went well. The blood work? Well…no! He was unhappy before they even stuck him. But when they did, the tears really flowed. They couldn’t make their magic work on his left arm, so they stabbed the right. There were some mumblings, which I took to mean they were having a challenging time with the right side, as well. All the while, Zane wailed. But they finally drew the 5ccs they needed.

We zoomed out the lab area, past the doctors, nurses, administrative staff, and technicians lined up at the coffee shop. They simply stared at us: me with my poop-stained pants, toting a child who—for all they knew—had the most horrid mother in the world.

So after baths, showers, and laundry, I am feeling slightly better about my day.

The morals (yes, there is more than one):

Never administer Miralax to your child the day before a hospital procedure.
Don't get too exited about reading when taking a child to the hospital. Better to just stay up until midnight to get that book read.
Truly, don’t sweat the small stuff. Sure, poop everywhere—by all intents and purposes—seems like a big deal. And, to be honest, it is no picnic to go through what I did this morning. However, it’s still small stuff. With a little problem-solving and a lot of cleaning products, we got through it okay. And now we have a comic (albeit gross) story to tell.

BTW...the hospital staff was so nice and nonjudmental. I truly appreciate them for those qualities.

Good News!

2011-08-06T17:30:00.000-06:00

After all the stress of a denial letter, things have (seemingly) been resolved. After another call to the woman at the Department of Human Services, I was told rather nonchalantly she had the packet in her mitts as we spoke. But we are proceeding with apprehension because it is hard to trust someone who erroneously sent out a letter stating all of Zane’s medical benefits had been terminated as of 7/31. I wrote a follow-up letter to reiterate what she had told me: there would be no lapse in Zane’s coverage.

On a happier note…Zane is mastering the art of standing! He has worked hard all summer at standing from a seated position and playing independently at a bench. I will stop writing since the video paints a much better picture. Check out our little guy. He is incredible!

Health Issues and a Bureaucratic Mess

2011-08-04T21:30:00.001-06:00

Normally, I do not post twice in one day. In fact, I am doing well if I post once a month.

However, the calm and uneventful stretch we’ve enjoyed has suddenly taken a turn. After speaking with the pediatrician today--being told she wanted to consult with a GI doctor--she called back. She decided it would be a good idea if Zane had another urine culture in the event his symptoms are caused by a UTI. So we dropped our plans (sorry, Justin) and headed into Durango. Zane’s urine was clear, so we are proceeding with an upper GI and blood work either tomorrow or early next week. I need to call the hospital tomorrow during business hours to see what they have available. We are also starting osteopathy again next week.

We arrived back in town around 6:00, picked up dinner, and stopped for the mail. I recognized the envelope: State of Colorado—Durango office. I opened it. Much to my surprise, the letter stated Zane’s Long Term Care and Medicaid benefits had been terminated as of July 31^st because we failed to return the redetermination packet. Of course, this is not at all true. In fact, Jeff hand-delivered the packet I completed at the beginning of July—almost two weeks prior to the July 15^th deadline on the paperwork. So, clearly they lost it.

Since it was after business hours, I left a message for the case manager who sent the letter. So did Jeff. Hopefully, she will sift through her piles of paperwork and find it. As Jeff said, “It is in that building somewhere.” I am hoping for a quick and easy resolution. If not, we are looking at scheduling a hearing. In which case, I will contact The Legal Center for a lawyer. We have never failed to complete anything surrounding Zane. Never. I don’t want to dust off those proverbial boxing gloves, but I will if I have to. I've done it before when another agency spitefully tried to revoke Zane's Medicaid, and they lost.

Please think good thoughts. I’ll update when I find out more.

Next Steps

2011-08-04T14:20:00.000-06:00

Despite all the efforts of Zane’s pediatrician, she has not yet found a solution to his vomiting/coughing/gagging. We tried switching his prophylactic antibiotic—thinking he had a reaction to it. We changed his allergy medication and increased his Miralax dosage. Yet none of this has worked.

After speaking with the doctor on the phone today, our next step appears to be testing. Poor kid. It’s really the last thing he needs. He has been through so much already. She is going to talk with a GI Specialist and see if he/she wants to proceed with upper and/or lower GIs. I had an upper in the past, which was not so bad. I had to swallow barium. Not sure how that will work with Zane since he does not consume quantities by mouth. IV perhaps?

Keep good thoughts for Zane. He has a lot coming up within the next month or so: GI testing, fitting for hearing aids, and his surgery on September 12^th.

Medication Roulette

2011-07-27T14:14:00.000-06:00

Gagging. Sputtering. Coughing. Vomiting. It could be a number of things. Recently, Zane switched from Amoxicillin to Primsol as a prophylactic due to a breakthrough infection. Maybe these things are side effects. Perhaps his dosage of Miralax for constipation is not high enough. Then again, maybe it is reflux, and he requires a different dose of Prevacid. We’re monkeying around with all of these things to get to the bottom of what is ailing Zane this time around. In many ways, it is a mystery. Zane’s issues seem to come and go in waves. Yet we never know when the tide will come back in and sweep us away with a new set of challenges.

On a happier note: We took the boys to Yankee Boy Basin to explore over the weekend, then ended our day at the hot springs. Zane luxuriated in the warm water for nearly two hours. My little water bug!

Lovin' the Water

2011-07-19T18:00:00.000-06:00

Apparently both of my boys are water babies. I took them to the Durango Recreation Center today to play in the pool. They both had a blast. Zane stood and splashed the entire time he was in the water. When I took him out—thinking he needed a break—he straightened his legs and scooted himself off my lap: his way of saying he did not want to sit out. Sure enough, he was completely ecstatic when he was back in the pool. I guess this means it’s time to move to the beach—or at least get a second home near one. *Wishful thinking*

Also, Zane and our family received another mention in The Durango Herald.

Surgery Date Is Scheduled

2011-07-09T11:50:00.000-06:00

Zane is scheduled for kidney surgery on September 12^th at Children’s Hospital. He and I will make the drive, and I will stay with him in the hospital since he will be in-patient. Jeff and Justin will remain at home.

I tried to coordinate the surgery consultation for his ptosis for the same trip, but of course things could not be so easy. The only appointment they had was a week before his surgery date. There is no way I am paying for hotel rooms for additional week for a simple consultation (there are rarely rooms available at the two Ronald McDonald Houses in Denver when I call) . Zane’s eye appointments will have to wait until 2012.

Please keep thoughts for him as his surgery approaches.

Overdue Skiing Video

2011-06-27T15:42:00.000-06:00

In January, the boys were able to ski together for the first time thanks to Adaptive Sports Association!

Kidneys, UTIs, and All That Fun Stuff

2011-06-15T18:59:00.000-06:00

Well, it has been awhile since I’ve updated. Things have been mighty busy and crazy. Zane wound up having another UTI. He is doing much better after a ten-day course of antibiotics. In that time, we traveled to Phoenix to help with family matters, as well.

Both boys had well check-ups yesterday, but nothing definitive was decided about Zane and kidney surgery. Given his recent UTI, I expected to hear that surgery was imminent. Instead, I went away uncertain and a bit confused. I left the office with an order for another VCUG. Zane’s urology appointment (this time in Durango) is scheduled for July 18th—a little too long to wait in my mind. So I called the urologist’s office for some direction and clarification. It seems all we do is test our poor guy, but not really resolve the reflux issue. Clearly, the amoxicillin is not working as a prophylactic anymore, so I insisted the pediatrician consider a new antibiotic for Zane while we wait. She’s looking into it. Anyway, the nurse practitioner at the urologist’s office is going to ask the doctor if he will review Zane’s VCUG prior to July 18th to determine whether Zane needs in-patient surgery or not. That way, we can likely have it done before the school year begins. Of course, this may have to be coordinated with the ptosis surgery, as well: a surgery for which we still need a consultation. It really sucks living seven hours from a children’s hospital.

So that’s where we stand. I am going to try to get the boys on a summer schedule I created for them back in May before everything went crazy. They both need structure, academics, and exercise. Our summer motto: no regression! They need to enter school in August at the top of their games!

Post-Pediatric Update

2011-06-01T08:32:00.000-06:00

From all appearances—meaning the initial testing of urine—it seems Zane has another UTI. We have to wait 48 hours for the culture to grow in order to make an actual confirmation. But, for the time being, he is on a ten-day course of antibiotics.

In the event Zane does have another UTI, the VCUG requested by his urologist will simply be bypassed. Likely, he will move forward with in-patient surgery to correct his kidney reflux. Each UTI Zane experiences causes further scarring, which can lead to damage to his kidneys.

We don’t know any details yet, but I assume Zane will have the surgery sooner than later since the prophylactic antibiotics failed to do their job. Initially, I had mapped out in my head an August trip for out-patient surgery and consultations. We’ll see after Thursday’s results if the plan in my mind can remain in place or not.

Another Trip...To the Pediatrician

2011-05-31T12:23:00.000-06:00

We’re off to the pediatrician’s today. Zane could not hold down his food last night during his continuous feed, so we stopped it early and gave him a slow infusion of Pedialyte halfway through the night. By morning, he seemed all right. But around bath time, he had the chills, soon followed by a fever again (101.6). He is just plain miserable.

The pediatrician’s office is booked today—likely due to the holiday—but they always manage to fit him in due to his more concerning medical issues (i.e., UTI infections). Looks like the little guy gets another dose of misery this afternoon with a catheter. I am hoping it is simply a viral infection clinging on. I don’t want in-patient surgery as part of his horizon. Wish us luck.

Sicklies, Please Leave

2011-05-30T16:32:00.000-06:00

Zane cannot seem to get well. We abandoned our campsite in Ridgway one day early because Zane awoke with a fever. We had no way to register the actual temperature (as I left the thermometer at home) and no drugs like acetaminophen or ibuprofen to give to him (as I used the last of a bottle on his pain relief the night before). It didn’t help matters that I was up a big part of Saturday night sick to my stomach. Not a fun thing to happen while camping.

When we arrived back in town, we made the requisite stop at Wal-Mart for drugs and Pedialyte, then gauged his temperature at home: 102.9. Of course, these things tend to happen on Friday nights, weekends in general, or on extended holiday weekends when the doctor’s office is closed. We have managed to keep his temperature under control, but he cannot altogether shake it. Of course, this makes me wonder if he has yet another UTI or if he is simply suffering from the same virus-type stuff I did (although, I didn’t have a fever).

So if the temp stays up overnight and into tomorrow, it looks like we’ll be making a trip to the pediatrician’s office for a lovely catheterization and urine culture. Another UTI would only mean one thing: in-patient surgery to fix his kidney reflux issue once and for all. *Sigh*

Stomach Creepy Crawlies

2011-05-27T12:19:00.000-06:00

One day after returning from The Children’s Hospital, Zane has a nasty stomach bug. This happened when we last went in November, as well. He cannot keep anything in his stomach. For now, he is strictly on a diet of Pedialyte. I was hoping to get Zane back on his exercise regimen and new summer schedule. But I guess that will have to wait a little longer. Hopefully, it is just a 24-hour thing.

Back Home

2011-05-26T11:11:00.000-06:00

We’re back from Denver…for a short time. We are back to unpack, do laundry, then repack for a camping trip.

Denver was not a whole lot of fun this time around. Aside from spending most of our time at The Children’s Hospital, it rained. So Justin was quite bored by the whole experience. He and Jeff had planned to go to Dinosaur Ridge where dinosaurs such as Apatosaurus, Stegosaurus, and Allosaurus (Justin’s favorite) were first discovered. Trails allow visitors to explore dinosaur tracks and fossils. Instead, Justin watched Sponge Bob at the hotel room. Not great fun.

Zane did well under sedation. They had him anesthetized for four hours to perform a DMSA (renal) scan, ear wax removal, an ABR, and a dental cleaning. As a precaution, the anesthesiologist decided to admit Zane overnight to keep tabs on his oxygen saturation due to the not-so-pleasant coding experience last time he went under. All went well. There were no desatting episodes overnight.

As far as the results of his procedures: Zane will likely need to try out some hearing aids, as the audiologist determined Zane has mild hearing loss in both ears. We don’t know if Zane will keep the hearing aids in, so we are able to try them out for 30 days before making a purchase. But in order for this to happen, Zane needs molds of his ears made, and then needs to have a fitting. Afterward, he requires a one-month follow up. If things work out at that time, he can order his own set of hearing aids.

Aside from his ears, Zane needs to have urologic surgery sometime this summer. His urologist wants him to have one more VCUG here in town before the doctor comes to Durango in July for a series of clinics. At that time, he will see Zane again and determine the extent of his surgery. We were hoping to have it done in conjunction with eye surgery, but life does not always go as planned.

The morning Zane was discharged, we had a surgery consultation at the Rocky Mountain Lions Eye Institute to talk about Zane’s ptosis. Unfortunately, Zane was less than happy from 7:00am that morning all through the appointment. He wailed so much, he would not even open his eyes for a consultation, which is a critical component in determining the extent of Zane’s eye surgery. So we will need to come back for a consult again sometime. I am not sure how all this will be coordinated since we live some 350 miles away from the hospital. Apparently—aside from the much-needed eye consultation—Zane will need to have the surgery with a follow-up one week later, then an additional follow up a month later. At this point, I cannot wrap my mind around all that needs to be coordinated.

Fortunately, Zane’s dental issues (gum loss on the bottom) can be followed here in town since there is a pediatric dentist here in Durango. Yay for that!

Time to pack for Ridgway and Ouray. Again, thank you to everyone who called, texted, and checked on Zane this past week.

Denver Here We Come

2011-05-21T14:37:00.000-06:00

Zaner is off to Children’s Hospital in Denver. We are keeping our fingers crossed that he will remain cold and illness-free since he is scheduled for sedation on Tuesday. Even more so, fingers (and toes) are double crossed that his four-hour-long sedation goes without event. I have to say, I am nervous about the whole thing.

Last night (Friday evening) we received a written letter from the eye institute, telling us that the doctor will not be in on Wednesday during Zane’s scheduled time for the surgery consult for his eye. We need to reschedule. Our first appointment is in Denver…on Monday…and we live at the other end of the state...seven hours away. What happened to picking up a phone so we could reschedule for this current trip? Not days before we’re scheduled to leave. As it is now, Zane likely will not get his surgery consultation for his ptosis until next year unless they can squeeze us in last minute on Monday. What is wrong with people? Now the person on the receiving end of the phone line on Monday is going to get a piece of my mind. My mom wrath could easily have been avoided on their parts by picking up the phone and making a simple phone call.

Anyway, please keep good thoughts for Zane. And prayers are so appreciated! I’ll be sure to update when we know more.

The Road to Recovery

2011-05-04T10:32:00.000-06:00

Aside from being a little tired, Zane seems to be returning to his normal, smiley self. I am not surprised he wants to rest and sleep, given the fact that he was restless, crying, and unhappy for five days. We did some light exercise and read a couple of books together this morning. But it looks as though dehydration may have been the problem over the weekend.

Thanks again for all the positive thoughts and prayers for Zane.

Emergency Room

2011-05-02T12:25:00.001-06:00

Yesterday Justin asked me with a beaming smile on his face, “Is this your best birthday ever?” He had drawn a picture for me and written a touching poem; he and Jeff bought a cake, gave me a present (from all three), and worked hard to make it a nice day. And though it wasn't the best birthday ever, I could not tell that to Justin. He just loves holidays, festivities, and celebrations. So I told him, "It's a good birthday." And it was, except for missing Sara and except for Zane’s illness.

By 8:00 PM, as Jeff readied Zane for bed, he noticed a rash on Zane's legs. Zane’s fussiness (actually yelling and wailing are more descriptive words) had increased. I finally called the pediatrician’s answering service. After listening to a description of his behavior and the rash, she decided it would be best to take Zane to the ER. Her thoughts: better at 8:00 than at 11:00 if things take a turn for the worse. I agreed.

I must say, the staff at the ER at Mercy were SO nice and SO great. Zane received the best care. After IV fluids, two blood draws, a strep test, and a catheterization, all tests came back normal. The ER doctor seemed baffled by what was ailing Zane. After 200 ccs of IV fluids, Zane seemed to settle down for a short time. But for the most part, he complained and cried almost the entire time during his four-hour stay.

We were sent home (and they asked if I felt comfortable to leave) with the assumption that Zane was dehydrated from his recent stomach virus. Since being home, he has settled down some. However, he still is not happy. He has been biting his hands (typically a sign of pain), grimacing, waking frequently—despite his 1:00 AM bedtime last night—and still yelling out and complaining. Though not as often as over the weekend.

The pediatrician wants to give him today to hydrate some more and recover. If he is not better by tomorrow, he will be seen in her office.

Thank you for the good thoughts and prayers for Zane.

Four Days of Unhappiness

2011-05-01T15:47:00.000-06:00

We thought Zane was on the mend. He had a day or so of happiness. But since Thursday, he has been crying day and night, and we cannot figure out what is wrong. Initially, we thought he may have experienced residual cramping from the stomach bug. Now we’re not so sure. For four days now, he has been extremely unhappy. Some pain medication has helped in short bursts, but we still do not know what is causing his discomfort. This is so unlike him. Typically, he is a very smiley and happy child.

Usually I am not one to wish time away (especially on my birthday weekend), but I will be glad when 8:30 AM rolls around tomorrow morning, so I can call the pediatrician and allay my worries (fingers crossed). I considered calling her answering service, but do not have anything specific to describe to her other than nonstop fussiness.

Keep Zane in your thoughts and prayers, please.

2011-04-25T18:45:00.000-06:00

Thank you to everyone who offered (and continues to offer) condolences to our family.

Jeff had called me on Friday morning, reporting that Zane had a fever. He has been sick all weekend and into today. It appears he has a stomach virus, which may last as long as 10 days. He's been cranky and lethargic; very un-Zane like.

We are missing Sara so very much that I wanted to share some additional pictures to celebrate her inner and outer beauty, and how deeply she will be missed.

Get well, Zane.
We love you, Sara.

Sad News

2011-04-22T09:02:00.000-06:00

This past week, Zane's Aunt Sara died tragically. He and Sara had an amazing bond with one another. They often spent time with each other in the purist of peace and quiet. Seeing Zane and Sara together sincerely touched my heart. Not only was Sara an incredible aunt to Zane, but she treated Justin with equal love and attention. She will be missed beyond belief. Out hearts are completely shattered. Please say prayers for my brother, Steve (her husband), and for Sara's parents, Kim and Linda Collis.

Mr. Opinionated

2011-04-15T13:27:00.000-06:00

Who says a person needs words to communicate?

I cannot believe how much Zane has matured over the past year. I attribute some of that to age and some to the fact that he’s almost through his first year of school. Being with his peers has helped him immensely. As part of his maturity, I have noticed Zane expressing his opinions more frequently. It used to be that I could do just about anything with him, and he would let me. Now I find him protesting more and more.

Example: Zane is a big teeth grinder (some of you may have read this post). To save his teeth and our ears, we often will pop a pacifier into his mouth. During dinner last night, the teeth grinding started up again. I lifted his passy to his mouth, and he distinctly pushed my hand away. I tried again, and he pushed at the pacifier. He clearly did not want it.

But he makes his opinion known all the time.

• He makes loud declarations if we leave him alone by himself in a room (usually during tube feedings, as it is not easy to move Zane and his whole set up every time we move from room to room).

• He clenches his teeth and shuts his mouth when he sees the toothbrush heading his way.

• He abruptly turns his face away when he doesn’t want a kiss.

• He straightens his legs and wiggles his body when he doesn’t want to be held.

• He throws/pushes toys he doesn’t want onto the floor.

I am so profoundly excited by the progress he has made. Sure, he’s still not walking or talking, but he IS making progress! And it is absolutely thrilling to me!

Cancer Screening

2011-04-08T12:04:00.000-06:00

Every six months, Zane has an abdominal and renal ultrasound to check for Wilms tumor and hepatoblastoma. The occurrence of it is greater in kids with Trisomy 18. Today was his day. Normally, he loves the tickle of the ultrasound wand sliding over his belly. But this morning, he was not a happy little camper. He started to screw up his face and pucker his mouth. Likely it was due to the fact that I had to pin him down a bit. He is just so wiggly.

So far he has had clean results. Hopefully that will continue to be the case. *Fingers crossed*

I Am Going to Scream

2011-04-06T09:09:00.000-06:00

Zane seriously needs to have his sedated DMSA scan for his kidneys. Yet unseen forces seem to be working against him (Darth Vader? Residual leprechauns from St. Patty’s Day? The dental scheduler?) to foil our plans for Children’s Hospital.

This time it is the Dental Clinic. Though they are the least important in the string of appointments Zane needs, they seem to be running the show. Apparently, they are the ones who set up anesthesia and coordinate all of the other appointments. But before the appointments can be scheduled, I need to fill out surgery paperwork and fax it back to the scheduler. I am more than happy to do this. But, I ask, how can I if she will not send the paperwork to me? We have been waiting for over a week for her to get her act together and send a simple fax to us. In the meantime, we are slipping further and further into June for our appointment time.

I called the dental scheduler again to ask where the paperwork was, and she spewed off a laundry list of excuses as to why we have not received it. Including, “It has only been a week.” If I waited 7-10 days to fax something for Destination ImagiNation, I would be considered lax in my job. I tried to impress upon her the importance of getting this to us, as Zane needs to see anesthesiology, have an ABR and DMSA scan, go for a surgery consultation, and have a follow-up appointment with the urologist. She doesn’t care. “The dentists are with patients. They are busy.”

At this point, I am ready to forget dental altogether. I know Zane needs a deep, sedated cleaning. But, frankly, this is far more stress than I care to handle. The other clinics are able to schedule things in a nice, streamlined fashion. If dental is such an aggravation, it may be time to find alternative procedures to give Zane clean and healthy teeth and gums.

Tastes

2011-04-01T21:03:00.000-06:00

Even though Zane is tube fed, he loves to taste foods. One of his favorites: Dum Dum pops. He literally likes to strong-arm me as he pulls them to his mouth. It is quite cute.

Other foods he like to taste:
• Yogurt

• Applesauce

• Pumpkin pie (without the crust)

• Ice cream

• Fresh fruit (in the mesh pouch thing-a-ma-jig)

• Pudding

As you can see, he has quite the sweet tooth! Bon appetit, Zane.

Recovered

2011-03-25T10:27:00.000-06:00

The antibiotics have been consumed, the extra fluids have been stopped, and the nebulizer treatments have slowed down. Zane is definitely feeling better. He still has some residual congestion, but that is to be expected. Yesterday he returned to school, and was very happy about it.

After all the confusion over appointments—and the will-they-or-will-they-not be scheduled—the coordinator managed to get everything lined up for Denver with the exception of dental. However, Zane’s pediatrician made the call that he should not be sedated a week after a bout with pneumonia. The coordinator was not happy with me; she had to cancel all the appointments she scrambled to secure. But come to find out, anesthesia told her they will not sedate until six weeks after pneumonia anyway. So now we are planning on a trip to Children’s for some time in May.

I am just happy Zane is on the road to recovery and acting like his old self again. It will take some time to get him back into his exercise schedule—since I backed off of it during his illness—but he will get there. He always does.

Thanks for sending positive thoughts and energy his way!

On the Mend

2011-03-20T22:11:00.000-06:00

It appears Zane is on the mend. He has been on Azithromycin since Friday, and tonight he seemed to rally a bit, showing us hints of the happy and smiling Zane we usually know.

We’re still maintaining his intense regimen so he does not suffer any setbacks. Jeff took over care for the entire weekend while I worked, and he seemed pretty exhausted by the end of today.

We now have Zane’s appointments for Denver set, with the exception of dental. Unfortunately, if Zane is not 100% by the 29th, we will not go. He cannot undergo sedation unless his illness is completely wiped out. Fortunately Zane had walking pneumonia. This means his infection was mild and did not require hospitalization (a person can still walk around and do the things he or she typically does).

Thank you to all who thought good thoughts and said prayers for him. We really appreciate it!

Quick Update

2011-03-18T22:27:00.000-06:00

Last night during appraiser training for DI—where both Jeff and I were involved—Zane started to run a fever. We gave him Motrin, but at 3:00am it had continued to rise. This morning—in the middle of tournament preparations—Jeff and I took him to the pediatrician. Long story short: he has walking pneumonia. Fortunately, his oxygen saturation levels were in the 90s, and he did not have to be hospitalized. For the next five days, he is on an antibiotic. The rest of his regimen remains the same.

I cared for Zane during the first half of the day, trying to get last-minute work done in between. Jeff took over care in the afternoon and into the evening while I set up the tournament site.

It has been a loooong day. I awoke at 3:00am and have been going full force until my arrival home at 9:30 pm. The tournament is all day tomorrow, so Jeff will take care of the boys. I am already having sweet dreams about Sunday. Hopefully Zane will be feeling better by then.

The Cold Bug Hits

2011-03-17T05:27:00.000-06:00

Zane is sick. He managed to make it through most of the winter without catching anything. A simple call to the pediatrician to see if I could administer over-the-counter cough medicine resulted in an office visit and an intense regimen to get him well. This is because walking pneumonia is apparently going around. While Zane thankfully has nothing more than a cold, he needs to be 100% well for his sedation at the end of the month if we’re able to go.

Here are the new steps added to Zane’s schedule to get him well:

• Five nebulizer treatments per day (supposed to be six, but we can’t make that work). As Zane’s grandparents know, this can be a challenging feat. Each treatment ranges from 10-20 minutes, depending on the medicine. One of us has to sit with Zane and hold the mask on because—like most rascally four-year-olds—he doesn’t like to keep it on.

• Two 20-minute steam baths per day (supposed to be three, but we can’t make that work). Rule: no unsupervised trips to the shower/bath for kids in the house. So, I hang out with Zane in the bathroom—sometimes with a book.

• Three extra ounces of fluid in the form of Pedialyte (supposed to be 6-8, but we can’t make that work). Zane already spends three daytime hours being tube fed. We need to fit the extra fluid in between feeds. His small stomach can only handle a certain volume before he throws up. 6-8 ounces may be nothing to most of us, but it is a lot to Zane. I’ve found he can only tolerate an extra ounce between feedings. Thus, three ounces instead of 6-8. Otherwise, he’d be hooked up to the pump all day.

• Three doses of elderberry syrup. I can do this!

Normally, this would be par for the course. But this is DI (Destination ImagiNation) week for me. The tournament is Saturday. As the Regional Director—well, to say the least—it’s been busy and hectic. So this added regimen is a bit exhausting. Yesterday, I gave Zane a nebulizer treatment while on a business call; I conducted a second call in the bathroom with the shower running.

As for Justin, he’s pretty much been on his own until Jeff gets home from work. He made me pinky promise that he’d have his mom back by Sunday. I can do that, too!

I am not one to wish away time. But, needless to say, Sunday cannot come soon enough.

Appointment Updates

2011-03-11T16:13:00.000-07:00

The coordinator who agreed to help set up Zane’s upcoming appointments is trying to make things right. Apparently, people failed Zane on all levels, which makes me sad. The pediatrician did not get records to Children’s in a timely manner; the complex scheduler completely dropped the ball; and the coordinator here in town was too trusting of other people to set the appointments, so she didn’t check up on them.

As it stands right now, Zane’s sedation, DMSA scan, and ABR are set up. However, we need confirmation for the anesthesiology consult for the day prior to the sedation. Plus, we are unsure whether we will be able to see the urologist for a follow-up appointment or the plastic surgeon for a consult since both are not in the office when we’re scheduled to be in Denver. Word is they will arrange to come in and see Zane. But I am a bit leery of those verbal promises right now.

So, we are still in limbo. The coordinator went out of town on vacation last week without resolving everything. Normally, this would make me nervous. But, sadly, I have convinced myself that things are not going to work out anyway. If they do, then okay. If they don’t, no disappointments.

Speechless

2011-03-01T14:36:00.000-07:00

I am speechless today. Back in December, we enlisted the help of an outside person to schedule Zane’s appointments for Children’s Hospital since it is a laborious and fruitless task to attempt it myself. I tried once before and failed--not due to any incompetency on my part, but because offices and clinics seem less willing to work with parents than with fellow professionals.

As many of you may recall, Zane went to Children’s in November and needed to return for follow up. He was supposed to have the following appointments:

• Anesthesia consultation
• ENT appointment
• DMSA scan of his kidneys (under sedation)
• ABR (under sedation)
• Dental cleaning (under sedation)
• Surgery consultation for his ptosis

Jeff and I have been waiting to hear of the appointment times. We had indicated the end of March (after the Destination ImagiNation tournament ends) or the beginning of April as a range of time that would work for us. We hadn’t heard anything, so I contacted the outside party. She had gone to the Complex Scheduler at The Children’s Hospital for assistance despite the fact that complex scheduling specifically lists on its webpage that they do not schedule most of the above-listed appointments.

Bottom line: no one scheduled anything. Zane has no appointments. Zippo. Zero. None. Someone did not do her job. And who is the victim? Zane.

The sad part is that when we were last in Denver, the urologist said Zane’s scan needed to take place no later than then end of March or beginning of April. And now, here we are.

This leads me to one conclusion: If you want it done, you have to do it yourself.

At this point, I don’t know what is going to happen with Zane, his kidney health, and his appointments. Denver is at least seven hours away. It’s not a simple drive down the road. This mistake has started a whole chain of events that I simply do not know how to handle.

Now that I finished my rant, I am once again back to being speechless.

Haircuts

2011-02-24T15:56:00.000-07:00

When Zane and I pick Justin up from school, the moms—and sometimes dads—congregate in the gym to wait for the kids. We go through the typical small talk: How was your day?, Looks like snow conversations. The moms—and sometimes dads—will say hi to Zane and help put the shoe back on that he loves to kick off.

This past week, one of the moms asked if I cut Zane’s hair. Maybe he looked a little shaggy that day, or she could see evidence of scissor marks in his hair. The answer was: yes, I do cut his hair. Ever since we embarked on our road trip in 2006, I found it easier to cut Justin’s hair than seek out a kid-friendly hair place. Now that Justin is older, he will let me run a razor through his hair. With Zane, it’s a little trickier. As a matter of fact, it is a two-person job.

Here’s the routine: We seat Zane in a booster chair. Jeff holds Zane’s head very firmly while I squirt water on it and hack away with my hair scissors. Sometimes Zane likes to make quick moves, so I have to move equally fast, and Jeff has to hold onto him that much harder. I cut his entire head of hair the same length. That is, whatever hair is visible above the fingers that grasp it. He has only a short tolerance for this activity. He will eventually fuss, which ultimately leads to crying. He doesn’t like crying. We don’t like crying. We’d rather avoid the crying, so speed is key.

The woman who cuts Jeff’s hair suggested we use a razor on Zane. It would be much safer, she said. But when we tried, he had a bald spot on one section of his head. He already has enough to deal with: splints, TLSO, glasses, adaptive equipment. He doesn’t need a bald head, too.

Maybe when he is less wiggly and can sit independently, he will go to an actual stylist. Until then, he’ll have to put up with mom, dad, and the scissor marks.

Bullying

2011-02-16T09:31:00.002-07:00

My little Zane. There are so many wonderful things to say about him. Aside from being adorable and sweet, he is free of judgment and discrimination. In fact, if you know Zane, you would say he is accepting of everyone, a pure soul. He shares a smile with everyone regardless of age, ethnicity, abilities, or gender.

Fortunately, we live in a town where Zane is accepted for who he is. And, so far, he has not been mistreated or bullied because of his cognitive and physical differences. However, these things weigh heavily on my mind.

I will never forget an incident that occurred back in 2008 at the Denver Zoo. A group of adolescent boys passed Zane, pointed at him, and laughed. Now I had been bullied, picked on, teased when I was a kid, so I know first-hand how painful the experience can be. But the ridicule on that day at the zoo stung so much more because it was aimed at my son. My son who did not have the voice to defend himself. The son who would gladly offer those kids a smile if they took the time to receive it.

By the time I processed the string of events, the moment to react had already passed. The kids were gone. In retrospect, I realized their cruelty had everything to do with their own insecurities and nothing to do with Zane.

If you are a viewer of Glee—as I am—you will recognize Lauren Potter in this video. She plays Becky. Her message is a worthy one. Please share her message with others. Our world needs more kindness and less bullying.

Teeth Grinding

2011-02-12T20:29:00.000-07:00

Bruxism. That’s what it’s called. It’s the official name for teeth grinding, and Zane does it almost all the time. It absolutely drives me crazy, especially when I am trying to write or when I am driving. Zane’s pediatric dentist said it is quite common to see habitual teeth grinding in kids with special needs. Likely, it provides him with some sort of stimulation (via the sensation or noise) that does not prove irritating to him in any way. To save my nerves (and his teeth), I have offered him the use of a pacifier. This is something I absolutely discouraged with Justin. I did not want Justin to develop a reliance or oral fixation. And he didn’t. But with Zane, the pacifier is a means of making everyone happy. He enjoys munching on the pacifier, and I do not cringe as often at the sound of enamel on enamel. It’s a good compromise. Of course there are times, even with the pacifier, that he prefers to grind his teeth. I guess you can’t win them all.

Presume Competence

2011-02-10T14:38:00.001-07:00

When we are not with our kids, we moms (and dads, too) seem to miss all the good stuff.

I received a report from Zane’s Occupational Therapist on Tuesday. They have been practicing switch use. On Tuesday (so I heard since I wasn’t there—no resentment, mind you), the switch was hooked up to vibration. The note stated that Zane really seemed to make the connection between the switch and the vibrating. He would make it go on and off and laugh. The note continues: “He stopped for awhile, so I asked if he wanted more. He clearly shook his head no. I left the switch to see if he would push it and he didn’t.”

Okay, so I can’t be too resentful. For one, this is huge! He communicated his desire to stop. Also, I have seen him do this at home, but was never fully certain he was saying no or simply enjoying the vestibular motion.

Way to go, Zane!

To all the families out there with kids who have special needs: don’t ever let someone tell you your child does not understand what’s going on. As I learned at a PEAK Parent conference—always presume competence.

Thanks, Erin (OT) for presuming competence! We really appreciate Zane’s team of therapists.

A Mom Talks with the Director of Special Education

2011-02-09T11:03:00.000-07:00

Inclusion

2011-02-02T09:32:00.000-07:00

Yesterday I spent my morning in Zane’s preschool classroom. The main purpose was to take pictures and videos in order to start building a file for his next IEP meeting. It is crucial to do this because there is a lot of swirling controversy over whether or not Zane will be able to attend his home school once he enters kindergarten. Typically, kids with significant special needs like Zane get bussed to Durango’s center-based program. We’re not sure if that is truly in his best interest.

It was a real treat to be in the classroom. I have been in and out for short bursts of time since he started in August. But yesterday I stayed for the entire morning—until it was time for him to return home. Seeing the way many of Zane’s classmates interact with him (inviting him to play, holding his hand, scooting next to him, eating a snack with him) gives me hope for our future. Having Zane as part of an inclusive classroom has reciprocal benefits. We live in a community that is light on diversity. Our children here are not (in my opinion) prepared for what is representative of the world “out there”. So not only does interaction between Zane and his peers benefit him, but it promotes acceptance and diversity for our upcoming generation. And isn’t that what God and love are all about: Accepting people for who they are? Not passing judgment? Showing compassion? I definitely think that is what God is all about!

A List

2011-01-27T10:18:00.000-07:00

It’s a rare thing when I go to the doctor. Something has to be really wrong. Outside of the dentist and optometrist, I have only one doctor or health provider. This prompted me to make a list of all Zane’s health providers. It’s lengthy, so have a seat.

Pediatrician

Osteopath

Dentist

Ophthalmologist

Hand therapist

Physical therapist (at home)

Physical therapist (at school)

Occupational therapist

Speech therapist

Cardiologist

Urologist

Nutritionist

Surgeon

Rehab physician

An on-and-off-again CNA

Audiologist

Geneticist

Adaptive equipment specialist

Enteral feeding supply company

A second medical supply company

Pharmacist

Whew! I’m tired just writing it and thinking about all of the appointments he has.

Thanks for checking in.

Skiing

2011-01-20T16:30:00.000-07:00

This week, Zane skied with Adaptive Sports at Durango Mountain Resort for the first time. It was very exciting, and he loved it! Two instructors assisted him onto the chair lift and down the hill. They had planned to start on the learner’s hill (bunny hill), but decided to take him all the way to the top of the mountain because he seemed content in his bi-ski. It was so great because, for the first time, the four of us were able to ski as a family. While Jeff and I could not hear Zane due to the wind, we were told by his instructor that he was cooing, singing, and laughing. We will definitely take him again.

Spring Brings Flowers and...Children's Hospital

2011-01-06T14:22:00.000-07:00

Zane is going back to The Children’s Hospital in the spring. Normally, we try to limit our visits to Denver to once or twice a year. We have been very fortunate with Zane’s health and have not needed to see too many specialists out of town since he’s been born. This time around, he has quite a few things going on. I am working with a nurse from the health department to coordinate his appointments. I have tried to do it myself in the past with little luck. So come the end of March or beginning of April (after the SW Destination ImagiNation tournament is over), we will make the seven-hour drive again. On his menu:

• Anesthesiology (to make sure there are no problems with sedation due his 2007 coding where his O2 sats dropped to 26).

• A sedated DMSA scan of his kidneys to check for scarring.

• Under sedation, he will also have an ABR (auditory brainstem response test) for hearing and a deep dental cleaning.

• Consultation with the surgeon who will correct his ptosis.

• Follow up with the urologist to go over the results of the DMSA scan.

The pediatrician wanted us to visit the Special Care clinic and the Developmental Clinic, as well. But I think the other appointments will already tax me with information and running around.

We’ll return to Denver again in the summer for surgery. Definitely for the ptosis and perhaps for kidney surgery to repair his reflux.

We’re not sure if we’ll have to see a gastroenterologist at some point. Zane has been gagging quite a bit lately, which is obviously caused by his stomach reflux. His pediatrician is attempting to find the source of the problem, which only began after with returned from Denver in November with a whole host of new things to put into his stomach. God bless the nutrition department for wanting to put weight on Zane, but sometimes they do not consider the big picture.

Winter Time

2010-12-30T18:08:00.000-07:00

We have finally received snow—close to 20 inches, I think. That only means one thing: winter sport activities. Justin and Jeff already went skiing at Purgatory once this season. In a couple of weeks, we will take Zane skiing for the first time ever. He will be aided by Adaptive Sports and will use a bi-ski—a sit ski that will actually be maneuvered by volunteers with the Adaptive Sports Association. He loves sledding and vestibular motion, so we are hoping that means good things on the ski slopes.

Happy Birthday, Zane!

2010-12-21T22:41:00.001-07:00

It’s hard to believe it had been four years since you were born; four years from the time we heard the words: “He will die.” The stats were laid out for us like tarot cards: at least 90 % die in utero or shortly after birth; less than 10% survive to celebrate their first birthdays. Yet here you are today—December 22nd—at four years old. You have shown so much strength, demonstrated tremendous resiliency in that time—surgery, a second brush with death in the PICU, unending therapies, countless doctors’ appointments, specialists galore, trips to children’s hospitals, discrimination, and a death sentence based solely on your Trisomy 18 diagnosis. And yet you smile everyday with that amazing smile. A grin that calls forth a light in everyone you offer it to. You touch so many people with your will to progress and your will to live.

Your life has been (and continues to be) a gift to me. Sure, it is not always easy. Care is extensive and involved. But it is so worth it. It pales against the effort you put into life. You are required to try harder than anyone else I know to do the simplest things: to sit independently, to walk, to eat by mouth, to communicate your needs. You have taught me more than anyone else—without ever speaking a word. Compassion, living in the moment, appreciation, gratitude—all of these words have taken on greater meaning since you were born. You inspire me to be a better person and have helped me to glimpse spiritual purity: What life must be like without judgment, preconceived notions, and discrimination. I love you for all of this. But most of all, I love you for you.

Happy 4th Birthday, Zane! I am so proud to call you my son.

December Update

2010-12-08T21:26:00.000-07:00

If only there were thirty-some hours in a day. Perhaps then I could regularly update Zane’s blog. There never seems to be enough time to check off all the items on the to-do list. With that said, here’s the update.

The week before Thanksgiving, Zane and I drove to Denver for outpatient clinics at Children’s Hospital and Rocky Mountain Children’s. I will spare everyone the gritty details of those visits and skip ahead to the critical part. It has been recommended that Zane receives surgery for his ptosis. For those who may not know, ptosis is the partial closure of the lid over the eye. Apparently, Zane has been compensating for his lack of vision by tilting his head back. Long term, this will cause neck problems for him. Therefore, the ophthalmologist wants the ptosis to be surgically corrected by a plastic surgeon. I realize many women pay top dollar for a procedure such as this. But many of you may remember the incident back in 2007 when Zane coded after surgery—his oxygen saturation levels fell to 26—and nearly died. Had it not been for the critical care doctor in the PICU and her quick intubation, he would not have survived. Given his history, we are rather nervous about the surgery.

Zane and I have to return to Denver in the spring for a consultation with the surgeon and for a sedated kidney scan for his reflux. This sedation also makes us apprehensive. Fortunately, his pediatrician is on top of things and wants us to consult with anesthesiology prior to the procedure and the surgery to make sure the same thing does not happen again. Under sedation, he will finally receive the deep dental cleaning that has been recommended, as well as an ABR (auditory brainstem response test) for hearing. It looks like we’ll have a pretty busy spring and summer.

Aside for that, Zane has been very happy. He really enjoys preschool and his new friends. Next week, he will participate in a musical Christmas program. His PT plans to have him stand with his classmates using the stander. Though his progress is slower than what is typically expected for children, we are thrilled at the accomplishments he has achieved. We’re very proud of him.

Finally, Zane will celebrate his fourth birthday in two weeks!!! Wow! We never thought we would see this day. I am in the process of writing the book about our travels in 2006 and have reached the time of his birth. Revisiting that time is very emotional still. We cherish every moment with Zane—and with Justin, as well—knowing now that none of us is guaranteed a tomorrow.

Thanks for checking in on Zane.

Happy Halloween...and more!

2010-10-31T11:49:00.000-06:00

I could make a million excuses: juggling school and extracurricular activity schedules, working, writing, racing off to appointments, traveling, and managing sicknesses. But I won’t. Instead, I’ll give the abridged version of what’s been happening with Zane since his last update.

Both Justin and Zane started school in August; they’re both having a good year. Zane’s teachers, therapists, paraprofessional, and classmates have all embraced Zane in ways we never anticipated. He is very much a part of the inclusive classroom setting, but has necessary accommodations to help him better access his surroundings (a specialized chair, a communication board, and Cindy—his wonderful paraprofessional). Zane has already made some friends, as well: kids who even seek him out and approach him outside the classroom setting. We feel very blessed to have Zane in his community preschool. The families, professionals, and kids there are true models for others. They inspire acceptance of those who are differently-abled.

Zane managed to avoid illness at school until a month or so ago. In part, I think it is due to the daily dose of elderberry syrup his pediatrician insisted on. However, he has been battling a cough for at least three weeks and experienced some congestion with it, as well. Despite the ten-day course of antibiotics and ongoing nebulizer treatments, he cannot seem to shake the cough. It appears this may just be the new bug going around our area, as other kids are experiencing similar symptoms. I am not too concerned as long as it does not worsen.

Today we’re taking the boys trick-or-treating in Durango. The Bayfield events we attended yesterday were a real disappointment and a bust. Outside of our amazing library, our small town seems to have a hard time getting its act together when it comes to production value. Thank goodness for the library (www.lmpl.org). Like the plug?

Education World® : School Issues and Education News: Wire Side Chat: Making Inclusion the Norm

2010-06-04T16:12:00.002-06:00

Zane starts preschool in the fall. Though he will attend a private preschool, the staff there has been open and welcoming to have him attend as the first student with significant disabilities. I love their open-mindedness. However, we anticipate a struggle when he moves into the public school system two years down the line.

See, our small town ships kids like Zane twenty miles away (a forty-five-minute, one-way drive on our winding and often snow-coated and iced-up roads) to the next neighboring town to attend a center-based program. Once you get into the math, Zane would spend the equivalent of 6 ½ full work weeks riding mindlessly on a bus. In a nutshell, the district struggles with inclusion. Even worse, it expects parents and students to be happy about being excluded from our own community. I have one word for this: unacceptable.

Knowing how quickly two years can dissolve away, I am beginning my research to build a case for Zane and for other differently-abled children in our town. I found this wonderful article while searching for research-based evidence of success to center-based programs.

I welcome any comments or suggestions…and thanks for checking on Zane.

Education World® : School Issues and Education News: Wire Side Chat: Making Inclusion the Norm

EMC3

2010-05-03T09:50:00.000-06:00

Gosh, I am so bad at updating Zane’s website. Right now, I am caught up in a cyclone of searching for a literary agent or a small publisher for my writing. Marketing is more work than the writing itself.

Zane has fully recovered from his UTI. Today, he returns to the pediatrician for a follow up. She may decide to have Zane undergo another VCUG. In layman’s terms, it is an unpleasant x-ray exam that requires the use of a catheter to check for kidney reflux. Again. I say again because this will be Zane’s second one. Poor kiddo. He is such a trooper to put up with all of these invasive tests.

On a happier note, we are in the process of putting a new communication system into place for Zane. Over the past three months, I attended EMC³ training with Zane’s therapists. From the training, we have learned how to assess his means of communication and are developing a symbol system that he can access to better communicate with those around him. We are very much in the preliminary stages, but—due to his superior intellectual abilities—we believe he will catch on quickly. If anyone is interested in learning more, you can visit http://www.everymovecounts.net/. Jane Korsten is an amazing (let me emphasize that—AMAZING) woman! The children are first and foremost with her, and she knows her stuff. The program is not something a parent can do in isolation. It requires support of the entire team. Nonetheless, I highly recommend it.

Okay, I’m off to edit my manuscript. I promise to update again soon.

Susan

Feeling Better

2010-04-21T12:56:00.000-06:00

The smiles have returned, and Zane is on the road to recovery. Yesterday, Zane was diagnosed with a UTI (urinary tract infection). Most likely, this is a result of his kidney reflux. Back in November, his urologist suggested that Zane stop taking the prophylactic antibiotic. His pediatrician disagreed with the decision, but allowed the change. We won’t know with certainty that it is the cause of his infection until the end of the ten-day course of antibiotics. At that time, Zane may need to have another VCUG to check the kidneys for reflux.

While Zane may not have become ill due to hand touching, the whole experience has been a lesson to me: I need to stand up for Zane and keep him germ-free. I have been a bit lax in insisting on clean hands for the little guy, so I stand by my original post about hand washing.

Thank you so much to everyone who checked in on Zane, said prayers for him, thought happy thoughts, and simply cared. We appreciate each and everyone of you!

Infection

2010-04-19T17:38:00.001-06:00

Zane woke up with a fever of 102 degrees, so I made an appointment with the pediatrician. She took a urine sample and ordered blood work. Zane’s misery was made worse by the insertion of the catheter and by the pokes for the blood test. This afternoon, the pediatrician called and told us that Zane has a serious bacterial infection. Unfortunately, we will not know what type until the cultures have grown. However, she instructed me to bring him in late today for a shot of antibiotics. I have never seen our little guy this sick before. I am trying to keep my anxiety at bay, but it is not working. Please say prayers for a “benign” infection and a swift recovery.

Thanks.

2010-04-17T17:30:00.001-06:00

Now that my working life has settled down, I am able to write a grossly-overdue update about Zane. Unfortunately, he is in the throes of an illness. Yesterday afternoon, he started to exhibit the signs: lethargy, crankiness (in an otherwise happy boy), and a warm forehead. When I took his temperature, it was 99.7 Today, it peaked at 103.8. We’re trying to hold off on calling his pediatrician’s answering service. Instead, we are giving him lots of fluids along with every-four-hour doses of ibuprofen and acetaminophen.

I suspect Zane caught the illness from one of the many culprits this week who did not wash her hands before touching his. For some reason, people adore handling Zane’s hands. Unfortunately (even despite reminders from me), they tend to grab unto them without washing their own. Who knows where those hands have been: dealing with other school kids, opening door handles riddled with germs, covering their own coughs. I seriously am considering buying a sign to hang from his stroller to serve as a nonverbal reminder. Some people religiously wash up before physical interaction with Zane, and to all of those people I offer my eternal gratefulness. While some may say it is important for Zane to be exposed to all these illness to build his immunity, I ask: do you have a child with T18? We don’t want him to be sick. It could potentially result in a trip to the ER or a stay in the hospital.

Please, please, please…I beg you…wash your hands before putting yours on Zane.
Thank you.

RSV

2010-02-24T13:01:00.001-07:00

Zane has RSV. What more can I say? The little guy is pretty sick. Fortunately, the pediatrician checked his oxygen saturation level, and he is hanging in the 90’s, which means he does not need supplemental oxygen. However, he will receive Albuterol and Pulmicort treatments via the nebulizer for the next few weeks.

Whenever Zane is sick, it sets him back a bit with progress in his gross motor skills. But he needs a lot of rest and TLC right now, so the exercise will have to wait. He is still very happy, but he seems lethargic, his color is off, his eyes are red, and he has quite a bit of congestion in his chest right now.

On a separate note, Jeff and I hiked into and out of the Grand Canyon with a group of our friends from the Phoenix area. We had a great time. Jeff made it out first in less than four hours (and now he’s sick again; imagine that); I made it out in 5 hours and 43 minutes with my hiking pal, Chris. I had a great time trekking it out of the Canyon with her. Thanks for sticking with me. And thanks to Sally for planning the whole venture. But most especially, thank you to Jeff’s parents for traveling to Colorado, taking care of the boys (one of whom was sick), and for snow blowing our driveway during the recent series of storms.

January

2010-01-20T18:30:00.000-07:00

It’s been awhile since the last update. Everyone is back to being healthy. The nebulizer is packed away, as is the saline solution for nasal irrigation. Zane appreciates their disappearance, I am sure.

Home health services are well under way for Zane, which provide respite care for the family, as well. The CNA who cares for Zane is great with him. She devotes all of the time she is here to his care and therapies, so I know her presence will be beneficial to him. She will come for a full day this weekend, allowing us to take Justin skiing for the first time together. In the past, we have had to take him separately while one of us stays home to care for Zane. Fortunately, we received over a foot of snow recently with more to come this week.

Zane has also transitioned well from early intervention to San Juan BOCES—the organization that works with the school system to implement IDEA and provide Zane with the therapies he needs. All of his new therapists are terrific. Plus, he still privately receives an additional day of physical therapy from his early intervention therapist. Zane will start preschool next school year (August). We have been told to expect great advances once he is around kids who can model behaviors for him. Justin is helpful in that regard, but having a whole room full of kids will be even better.

Thanks for checking in on our little guy.

Happy New Year!

2009-12-31T16:33:00.001-07:00

The end of 2009 was a very sick one for our family. All four of us wound up with a nasty respiratory infection through Christmas. While Justin and I have recovered for the most part, Jeff and Zane are still fighting off the wicked bug. For Zane, this has meant four nebulizer treatments a day of both Pulmicort and Albuterol, along with a nasal irrigation of saline solution throughout the day.

The end of 2009 also marked another disappointment with respite care. Jeff and I had planned to spend time alone with Justin on the slopes of Durango Mountain Resort. An hour before we had intended to leave, the respite worker canceled. I have given up on outsiders providing us with the respite that we so desperately need. My parents came to celebrate the Christmas holiday with us. My dad—who has taken care of Zane before—agreed to watch him while we took Justin to Wolf Creek. That is when we fell ill. Fortuntely, Jeff’s parents are coming next weekend to watch both boys. Jeff and I plan to ski at Telluride while they are here. We will take Justin out skiing later this month even if it means taking Zane along to the slopes. I am through training respite workers and relying on them for assistance. It is too stressful to continue along the path I have been on with them since August of 2009.

We hope that 2010 brings peace and happiness to everyone. We plan to start off the new year on a positive and healthy note (that is, once all of us are back to being healthy).

Happy Birthday, Zane!

2009-12-21T13:18:00.005-07:00

Tuesday, December 22nd is Zane's third birthday!!! Happy birthday to the most beautiful three-year-old I know, to the little boy who has inspired me more than any adult ever has. We're so happy to have you in our lives, Zane. Thank you for being born.

Love,
Your Mom

IEP Day

2009-12-10T15:43:00.000-07:00

Zane had his IEP meeting today, which officially moves him out of early intervention and into the public school system. While he will now receive services (PT, ST, and OT) from San Juan Board of Cooperative Educational Services, he will not begin preschool until next school year. Instead, he will start going to the preschool to see the therapists instead of having them come to us at the home. Things went well with his IEP, and Zane will continue to see his current PT, as well. We hope to have him sitting without hands-on assistance by August when he will start his educational career.

Also, I have trained a fourth respite care provider this past week. The last one decided that the drive from Durango to where we live (18 miles) was too long. Good thing she doesn’t live in the Phoenix area; she’d never survive the commutes there. Oh well. This is the last person I plan to train for quite awhile. So far I am running a deficit in the respite department, having invested more hours in training than have been given to me.

In less than two weeks, Zane will be three years old. We never thought we would see this day come to fruition.

Denver

2009-11-21T22:06:00.001-07:00

We’re back from Denver and a return to no television stations, no decent stores, and NO TRAFFIC. There may be drawbacks to living in our little corner of Colorado, but there is no rush hour ridiculousness and no smog. Unbelievable, the amount of pollution hanging over the city. Plus, our mountains and scenery are not blighted by high rises and over-development.

Anyway, we took Zane to The Children’s Hospital for some clinics on Thursday and Friday. Things did not start well. Zane had an ABR (automated brainstem response) test for hearing scheduled. Or so we thought. Because we made the decision to have it be a non-sedated test, we sleep deprived the poor guy the night before and the day of the test. When he tried to drift off for a nap, Justin and I kept prodding him to stay awake (Jeff would have prodded, too, but he was at a conference). We arrived at audiology only to be told that only a traditional hearing screening had been scheduled. Plus, they added, they don’t do non-sedated tests with kids Zane’s age. I was livid. I tried to be kind and understanding, but it is hard when someone other than myself screwed up. And, it’s not like we live down the street from audiology. In fact, we’re eight hours away. They nonchalantly suggested we reschedule just as Zane drifted into a very still sleep in the office (would have been perfect to conduct the test under those conditions; even the audiologists admitted they could have done the test with him that sleepy and calm). As far as I am concerned, we won’t be doing an ABR in Denver anytime soon. It was no easy feat to get there to begin with—not to mention the expense of traveling.

On to Friday…Zane had three appointments that day: rehabilitation, urology, and ophthalmology. Zane has 20 percent curvature in his spine. When he reaches 50 percent, we’re looking at surgery for his scoliosis. That’s not now, so I’m not going to worry about it. Zane is now off prophylactic antibiotics for kidney reflux. If he experiences UTI’s again, he has to go back on them. If he doesn’t, his reflux is gone. We’ll see how it goes. Finally, Zane’s vision has improved. His far-sightedness has lessened, his strabismus is not as extreme as it once was, and his ptosis (partial closing of the left eye) is not causing vision loss so no surgery is recommended. Plus, he can now get some big-boy glasses. Goodbye to the Elton John classics many of you have seen in his photos. Yah!

Steps

2009-11-12T10:40:00.002-07:00

While I held Zane's hands over his head today, he took eight consecutive steps!!! Yesterday he took a few, but I thought it was probably a one-time deal. Not so. I am so excited that I needed to share with everyone!

BTW...both boys are feeling much better today. Turned out to be a 24-hour thing for Zane; Justin had it a lot longer, but he's well and at school today.

The Flu

2009-11-11T12:49:00.002-07:00

The flu has hit our house. Not the H1N1, but a horrible stomach virus. Justin wound up with a nasty bout of it beginning earlier this week. Of course, he is always the first, lucky recipient of these things since he basks in kindergarten germs five days a week. Now Zane appears to have it, too. Zane was supposed to have his transition evaluation today in Durango, but we had to cancel it. Instead, the boys are home with me, loading up on Gatorade/Pedialyte and getting lots of rest. I guess this stuff is going around. I just don’t want it in my home. Is that selfish or what?

Quick Update

2009-11-10T18:01:00.000-07:00

I noticed that I hadn’t updated the blog in—well—quite awhile. Fortunately, Zane has been very happy and very healthy. It may have helped that he had both his Synagis and H1N1 flu shots last month.

This month, we travel to The Children’s Hospital in Denver for some routine visits: Ophthalmology, Urology, Rehabilitation, and a non-sedated ABR with Audiology. We may add a short visit with the nutritionist, as well. However, her suggestions during this past summer seemed to precipitate another bout with reflux in Zane. So, I am not too anxious to see her.

We still do not have respite. I am tired of thinking about it; tired of talking about it; so we’ll leave it at that.

Thanks for checking on Zane. Hopefully, he will continue to have a healthy autumn and winter.

Thank You

2009-10-21T11:35:00.001-06:00

Lately, I have been in a very negative state of mind. Much of it has to do with the stress I have been under. And I apologize for projecting outward. I want to thank everyone who has been supportive by posting to the blog, emailing, calling, and sending warm thoughts through the U.S. Postal Service. I feel very uplifted by the encouragement that’s been offered and by those of you who have lent a listening ear. I am very blessed to have so many wonderful people in my life.

Today, along with the nurse from the home health agency, I helped to train a new aide for Zane. I love her! She and Zane had an instant rapport. While Zane loves people in general, he only really warms up to those who take the time to make a connection with him. She did! So something seemingly bad—an aid not showing up on Monday—led to something positive—an aid who really has connected with our little guy.

Respite Problems Again

2009-10-19T11:36:00.003-06:00

Respite has become a joke, a farce, and an absurdity around here. Sometimes I think the universe has something against me—or maybe it’s just the state of Colorado. It has been two weeks since we were supposed to receive respite care. There has been cancelation after cancelation. So today, I thought for sure the aide would be out. The agency said she would. But why should I ever presume to be so optimistic? Twenty minutes past the time of her arrival, I called the agency. Apparently, she had forgotten to come. At 9:00am, they said she was on her way. However, she never showed up. Now, I ask, is this the type of person I want to care for my son? If she cannot remember a simple appointment time, how is she supposed to provide quality care for Zane? I was supposed to have respite again this coming Wednesday, but now I am in the position where I have to train new people again. Aaaagh! I already trained two people who have never come out to give me a reprieve.

My friends and I have noticed that there seems to be a lackadaisical approach to life in the Durango area: appointments are suggestions, calling people back is optional, medical care is iffy (with the exception of the boys’ pediatrician)—that sort of thing. I am not used to this do-what-you-want attitude that I find in this area. I certainly didn’t grow up with it in the Midwest and didn’t experience it all the years I lived in Phoenix.

If I wasn’t so desperate to receive free time so that I can work my at-home jobs, then I would cancel respite with this agency altogether. Right now, it is more hassle than help.

Sickness and Immunizations

2009-10-16T11:09:00.003-06:00

(Warning: the last paragraph contains controversial content)

Last night at 7:00 our house was aglow with candles. Yesterday was Pregnancy and Infant Loss Remembrance Day. We lit candles for all of the little ones who were lost due to complications associated with Trisomy 18: Tristan, Noah, Molly, Ryan, Gabriela, Abigail, Brianna, Isaac, Meiko—to name just a few. We also know of many women who have lost children during pregnancy due to miscarriage, including myself. So we lit candles in remembrance of those babies, as well. I am sure I am forgetting some names, but not intentionally. Some of those lost were older than newborns, but it felt like a fitting time to light a candle for them, too. I was amazed I had enough candles for everyone. I must be keeping the candle industry alive.

On a different note, Justin was sick with what appeared to be the flu this past week. He had a fever for over 60 hours with some respiratory issues. He had the flu mist for the A strain over a month ago, so we can only assume it was the H1N1 virus. We kept Justin isolated from Zane the whole time he was sick, and so far Zane is his same happy self. I took him to get his flu shot at the pediatrician’s office today. They have been waiting on preservative-free shots, and they finally received them. We’re not sure whether we’ll have Zane immunized for the H1N1 yet. It appears as though Justin has already been exposed. The boys’ doctor is supposed to release something in writing as to her professional opinion about the vaccine. We will follow what she advises. She has always been very balanced when it comes to eastern and western medicine, so she is never eager to do something that could prove harmful to a child.

Speaking of immunizations, Zane has qualified again this year to receive the Synagis shot to prevent RSV since he falls into the high-risk category. The one time he did not receive it, he came down with RSV and wound up on supplemental oxygen. Obviously, we attempt to avoid that at all costs. Many children each fall/winter wind up in the hospital because of flu and RSV. We don’t want to be any of them, thus the vaccinations.

I know there is a lot of controversy about immunizations in general, but there is a reason many of the diseases of the past have been eradicated. We’ve always weighed the pros and cons of all situations (we’re very A-type personality that way), and the scientific evidence for immunizing is far stronger than the qualitative and subjective reasons not to. I respect everyone's personal choice. I just don't like people giving me a hard time because of my choices. Thus, the ranting last paragraph. I’ve stepped off my soap box now :-)

Ranting about Respite

2009-10-05T16:06:00.000-06:00

Respite was supposed to happen today. It didn’t. It feels as though it never will. The aide who was supposed to care for Zane today had to take her mother to the ER last night. I know these things happen, but I was disappointed and a bit miffed nonetheless. I had planned to work all morning, therefore I didn’t work yesterday. Now I am behind. The respite that is supposed to be helping me is a hindrance at this point. Last week, I gave up a few hours to help train the aides and they didn’t even come today. While this may not be a big deal for someone who has loads of free time (like the people who post status updates more than once per day on Facebook), it is a huge deal for me. In addition to caring for Justin and Zane, I work three jobs from home. Time is quite valuable. I must say, I loved spending the time with Zane this morning in lieu of work, but now I have to find time to fit my job duties in this week. Friday is supposed to be my next day of respite. We’ll see if it happens.

Weekend

2009-09-29T19:15:00.000-06:00

Jeff and I celebrated our anniversary in Ouray. Jeff’s parents drove from John Day, Oregon to watch the boys for an extended weekend. We really appreciate their generosity in doing that for us. It takes them approximately 16 hours to get here by car. Jeff and I hiked a couple of almost-five-mile-trails and visited the hot springs. We returned to some good news: Zane’s ultrasound of his kidneys and liver is normal (no tumors). Obviously, we are very relieved.

The G-Tube

2009-09-20T12:39:00.000-06:00

This is not the first time it has happened. Actually, it has happened a number of times: in The Children’s Hospital cafeteria, at the pediatrician’s office, at home. It has become another one of those typical things with Zane, much like brushing his hair or clipping his nails. His gastrostomy tube button—the one that plugs in the hole in his stomach—came out. This time, however, he lay in a soaked mess of formula and water. I hadn’t noticed it’s disappearance from his stoma area until I went to remove the tubing. Instead of looking at the Nutriport button, there was the reddened hole. Thankfully, it was still open enough to reinsert a new button, fill the balloon with water, and move on with the rest of our day.

In the past, anything medically related would cause a feeling of queasiness to rise from within. I even have been known to pass out. Now, it is just another one of those things that I have to do. Many times—including today—I am the only one here to do it. And, if the button isn’t put into place, Zane doesn’t get fed. The longer it is out, the greater the chances of it closing up (like an ear piercing, I guess). So the reinsertion of gastrostomy tubes is now a part of our new normal.

Here We Go Again

2009-09-16T09:39:00.001-06:00

It’s that time again. I’m not talking about flu shots (although, those are on the horizon, too); I’m talking about Zane’s renal and abdominal ultrasounds. Last year, the geneticist from The Children’s Hospital suggested that we begin screening Zane every three months for Wilms’ tumor (kidney cancer) and hepatoblastoma (cancer of the liver). There is a greater incidence of these two cancers in children with Trisomy 18. The geneticist told us that Wilms’ is a fast-spreading cancer, so he wanted us to have Zane frequently screened. However, we have elected to have an ultrasound every six months. He’s due for another this month, so we have an appointment set for next week.

This is one of those things that most parents do not have to concern themselves with. We certainly didn’t think about such weighty issues with Justin. With Zane, health concerns are chronic. While we may be able to push them to the backs of our minds during a healthy run, they always tend to resurface. There is always an underlying worry tied to Zane and his extra chromosome. While none of us know what lies ahead for ourselves or for our children, it is far more uncertain with a trisomy. We’re just hoping for another reprieve—to be able to breath another sigh of relief—after the results of this upcoming ultrasound.

It can be a definite roller-coaster ride at times. A ride that would be nice to abandon in the rear-view window for awhile. A ride that we’d give up forever if it meant a totally healthy Zane. But one we won’t abandon because we need to stay on it for our son.

To Sedate or Not to Sedate

2009-09-13T14:00:00.001-06:00

Seemingly easy decisions for most parents often prove difficult with a child who has a different chromosomal karotype—like Zane. At the moment, we are trying to coordinate appointments at The Children’s Hospital in Denver. Since the drive takes a day with kids, we work to fit in as many clinics as possible in a short time.

One of the appointments I am supposed to arrange is an ABR (auditory brainstem response) to test Zane’s hearing. He already has failed three hearing screenings. The next step to indicating where his hearing loss lies is with this ABR. However, the test requires that Zane be sedated. There are risks to anyone under sedation; more so to Zane. The last time Zane was anesthetized (in 2007) he coded twice, his oxygen saturation level dropped as low as 26, and he spent quite a few days in the PICU on a ventilator. This may have been the result of anesthesia; it may have been caused by the administration of morphine on the part of the nursing staff after being advised by me not to give him the drug. Whatever the cause, our son almost died.

While I understand the importance of hearing, I don’t know if it is worth risking Zane’s life. Sure, things may turn out just fine during and after sedation with an ABR. They also may not. The extra 18th chromosome that is present in presumably every cell of his body is unpredictable. His response to sedation may be different than most of ours given this extra genetic material.

We know Zane can hear. He responds to voices, music, and noises. What we don’t know is what pitches, what tones, he cannot perceive through his sense of hearing. But he is a happy child. He doesn’t seem frustrated by whatever absence of hearing he has. His pediatrician really wants him to have the test. I don’t. My instinct tells me it is the wrong thing to do. I’d rather continue to have my happy son who may or may not have significant hearing loss than risk putting him in harm’s way needlessly.

Back to Routine

2009-09-11T08:57:00.001-06:00

Jeff and I still have the lingering effects of the end-of-summer, back-to-school cold. Because it had hit our household pretty hard, much of our routine was shoved aside in exchange for rest. For Zane this meant no tummy time, no gait trainer, no practice with sitting and standing. During his occupational and physical therapy sessions yesterday, the regression was evident.

So starting today, we’re getting back to it. Not only for Zane, but for the rest of us, as well. Jeff and I have ignored exercise (who wants to hike or get winded while enduring an upper respiratory infection?). However, we can both feel—and see—the effects. And with Justin fully enmeshed in his new school and after-school schedules, he has to get into a routine, too. This past week, he started both soccer and acting. Normally a very pleasant child, Justin has had more than his share of cranky moments this past week.

So now that we’re all feeling better, it’s time to return to that rigorous schedule of ours. Though it was less than desirable to be sick, it was kind of nice to have a bit of a break from the hectic-ness of our life for a week or two. Back to the craziness :-)

Sleep Is for Pansies!

2009-09-08T08:35:00.003-06:00

It was a rough one last night. Justin collected some germs (unintentionally, of course) from school and shared them with the rest of the family. Justin and Zane are further along the road to recovery than Jeff and I are. Though, they are still experiencing some slight symptoms.

I think being out in the rain on Sunday in Telluride was a bad idea. I was up all night coughing; I doubt that I had more than three hours of sleep. At one point, my cough seemed under control, and I dozed off. That was the very moment that Zane chose to wail…for a long time. After Jeff cleared out his nose and gave him some Motrin—we think he’s cutting molars—Zane went back to sleep. I did not. Fortunately, I have a sweet husband who offered to take the day off to care for Zane and to take Justin to acting and soccer later today. I let him take Justin to school, but will find a way to rest this morning so that Jeff doesn’t have to use a personal day.

So, in honor of my friend, Sandy (wonderful mom to Ryan and Drew), I've entitled this entry: “Sleep is for pansies!” A good reminder for today! Thanks, Sandy!

Sad

2009-09-03T19:57:00.002-06:00

Sweet little Brianna passed away today. We are very heartbroken. Though we never met her or her family, we obviously feel a close bond with them. Brianna was only four months younger than Zane.

Please keep her family in your thoughts and prayers during this most difficult time.

Again, her website is www.briannagiveshope.blogspot.com

Susan

Sick

2009-08-30T18:53:00.001-06:00

It was inevitable. Now that Justin is back in school, we are all sick with colds. For Zane, this means nebulizer treatments every six hours. It also means a temporary hiatus from oral feedings and some of his exercises. He has been coughing a lot with this cold, which seems to be causing him to vomit. At least we hope it is the coughing and not the dreaded return of full-blown reflux.

We’ve been through the respiratory illnesses and reflux issues before. We’ve been very fortunate that Zane has been well through 2009 until now. Hopefully, this cold will be short-lived.

Transition

2009-08-29T13:11:00.001-06:00

It is taking a bit longer to receive respite than I thought it would. Like all things bureaucratic, there is SO MUCH paperwork. In addition to signing my name on endless signature lines, a nurse has to come out next week to go over what I do with Zane so that she and I can train the home health providers to care for him. It looks like it will be another week or two before respite is actually in place.

Next week, however, brings the start of some big changes for us. Zane is making the transition from early intervention services to the school system. He has been receiving therapies and services under Part C of IDEA (Individuals with Disabilities Education Act of 2004). When he turns three this December, he will fall under the jurisdiction of San Juan BOCES (Board of Cooperative Educational Services) where Jeff works. At that time, he will be serviced under Part B of the Act. This means that much of his therapy will revolve around how to help him function best in an educational setting. This is a very difficult transition to make, as Zane still needs a lot of help to do the most basic of things. I wish early intervention lasted until the age of five. He could use the additional support. His transition meeting is this coming Tuesday, September 1st. I am a little concerned that our town’s preschool will be unable to provide the environment (and attitude) that we want for Zane. Some concerning things have happened with the director of the school that make me wonder if we should send Zane to a Durango preschool instead. We’ll review all of our concerns with the appropriate people on that day and see what comes of it.

In the meantime, I am attempting to educate myself on IDEA. I am familiar with it from my days as a third-grade teacher. But now I think it is crucial that I become intimate with IDEA—it will only help me to be a better advocate for Zane going forward.

Respite

2009-08-25T17:30:00.000-06:00

It must be a dream. It can’t possibly be true. Yet, it is happening. I have called, badgered, researched, hoped, wished, kept my fingers crossed, and given up. Now, after all this time, we are finally getting respite services!

I am in the process of going through the required paperwork with a regional home health agency (not the nasty one who provided “services” through Zane’s Pediatric Hospice waiver, but a nicer and kinder one) to start in-home care for him. I have meetings tomorrow with two more people, then respite care should be official by week’s end.

I am easing myself into the process. It is hard relinquish control of Zane’s care after being in charge of it for over two and half years. While I could have someone come out the house every day of the week, I have chosen a more conservative approach: two days a week for three hours each time. That is as much control as I am willing to give up right now. I am sure, with time, I will grow more comfortable with a stranger watching my precious son. But, for now, I am happy with six hours a week.

Doctor’s Office

2009-08-18T17:31:00.001-06:00

Today we made a trip to the pediatrician. Ever since the nutritionist advised me to increase the rate of Zane’s feedings, he has been coughing. Typically, this is a precursor to reflux. So I made an appointment. The doctor listened to his lungs, checked his nose, and determined that Zane is not experiencing any outward evidence of reflux. Rather, he has allergies. He comes by them honestly: Justin has them, and Jeff has way too many to count. He now will take a dose of Claritin along with his numerous other medications and supplements. Of course, we’re greatly relieved to know that the reflux has not made a return visit…yet.

Brianna

2009-08-14T16:55:00.004-06:00

Please keep little Brianna and her family in your thoughts and prayers. Like Zane, she has a diagnosis of Trisomy 18 and has recently been in and out of the hospital four times. You can see her beautiful self and read about her journey at www.briannagiveshope.blogspot.com

We hope that a second opinion about her current medical condition brings more positive news.

Give Him a Hand

2009-08-11T18:00:00.005-06:00

In addition to making great progress in oral eating, Zane has recently started holding a spoon. This is huge feat considering his wrist contractures! At times, he will grasp a toddler veggie stick and feed himself. The crunchy food, of course, requires a lot of monitoring. Zane always bites off more than he’s supposed to, and aspiration still looms as a potential threat.

While most of the credit goes to Zane for his tremendous determination, a couple of others cannot be overlooked. Mary—Zane’s hand therapist—deserves the most kudos for creating hand splints for him since he was an infant. Without them, he would not be this far. Also, Zane’s OT—Sarah—has been working with him for the past couple of months on holding crayons, toys, and utensils. He’s come a long way since she started.

While Zane demonstrates his abilities in the video, no one can accuse him of being a neat freak!

(The link to the San Juan Kids brochure is in the left-hand column. Zane is the star of the brochure thanks to my friend, Rachel).

Telluride

2009-08-03T16:21:00.002-06:00

It is amazing! Zane slept through both nights at camp. While we were able to enjoy nice evenings (albeit with quite a few mosquitoes) and nights, Zane did become fussy on our Saturday hike. We attempted to take the Cross Mountain Trail, but only made it to the twenty-minute mark when Zane wailed. We gave him a break at trailside with some sweet potatoes. He continued to border on fussiness, so I took him back to the parking lot in his Kelty carrier, which he inherited from Justin. Of course, after a few minutes back on the trail, Zane was perfectly content. By then, it was too late for me to catch up with Jeff and Justin (I’m a slow hiker). I didn’t get to do what I wanted to do (hike) or see what I wanted to see (meadows and other cool stuff), but I did get to enjoy some nice one-on-one time with my littlest guy in the sweet mountains of Telluride. That counts for a lot!

Change of Venue

2009-07-29T17:11:00.001-06:00

We have moved—to a new site, that is. The new blog gives us more options than CaringBridge. While we will continue to post to the old site, we plan to attempt (eventually) to settle into the new one.

Zane is doing well. Despite the changes in nutrition that have been forced upon us, he continues to eat orally every day. He loves it, so I don’t understand why anyone would want to take that away from him. I tried mixing a “big boy” vitamin (crushed) into his meal, but he cannot be fooled. He absolutely detests the taste of it. Instead, we have ordered a more complete liquid vitamin online, which should be here in a few days. We can send that one through his tube, and he’ll be none the wiser. In the meantime, I am not forcing him to suffer with the crushed tablets. I’m using the infant vitamins until the new ones arrive.

It seems as though I can never not be busy. In addition to my column, I am also watching two kids every Monday and Wednesday until school starts in mid-August. It is a lot of work! I feel as though I already have my hands full with the boys. Starting next month, I start my position as Regional Director for Destination Imagination. Jeff and I were forced into taking over the job last season when the Regional Director quit without notice. I am on my own this year (i.e., without Jeff), so I am sure it will prove to be a busy eight months. I am not exactly complaining because I feel fortunate to have a job, especially one that I can do primarily from home. However, I am trying to find time for new writing and for submitting my old writing to publishers. This isn’t working out too well for me. But I occasionally manage to squeeze it into the small blocks of time I am able to find (usually after 10:30 at night).

We hope everyone has a nice upcoming weekend. We are going to make one final attempt to camp as a family. We’re headed to Telluride. I have been wanting to go there all summer. When Justin was a baby, we took him off-trail near Lizard Head pass. It is pretty remote and absolutely beautiful there. We’ll let you know how it goes and hopefully return with some happy pictures.