Winter Time

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!

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

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!

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

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

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

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

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.

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

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

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.