Happy New Year

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

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!

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

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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):

1. Never administer Miralax to your child the day before a hospital procedure.
2. 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.
3. 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!

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Inclusion

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

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

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.