Happy New Year!

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!

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

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

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

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

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

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

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

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

(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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

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

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.