EEG Results...Kind Of

It’s been nearly a week since we’ve received the results of the EEG. I apologize for not posting sooner, but it’s been pretty hectic around here. I did not speak directly to the neurologist who read Zane’s test results, so the information I have comes via word of mouth from the nurse practitioner at the pediatric office.

 

Zane definitely has seizure activity. We already knew this because we can visually observe them as they’re occurring. They are concentrated in the bilateral temporal lobes of the brain. However, when I asked what type of seizures he’s having, the NP told me that the neurologist didn’t say. (This is why I want to speak directly to the man). The neurologist suggested putting Zane on Keppra, gradually increasing the dose over three weeks.

 

The lowest dosage is not working. In fact, Zane had a horrid series of seizures late yesterday afternoon, crying in between them and completely upset and miserable afterward. Jeff gave him acetaminophen, which helped Zane relax and fall asleep. We were hoping the lowest dose would stop the seizures due to the potential side effects associated with the drug: suicidal thoughts in many patients. I’m not sure how this translates to Zane. Perhaps moodiness or depression. But it appears we’ll have to step up the dosage again this week.

 

Thankfully, I have three friends who were able to help me with the decision to put Zane on Keppra. They, too, have experience with seizures (either their own or their children’s). Thank you so very much to the three of you for helping me. This is a brand new area to me—a very mysterious one, I must add. I need to educate myself on brain activity, neurology, and seizures. It’s how I feel in control in a situation where I have little to no control.   

 

On a separate note: I am getting tons of lewd spam on Zane's blog. That being said, I am considering turning his blog into "invite only".  But I'll give everyone a heads up if that happens and instructions on how to continue to be a part of his blog.

Speak Out Against...Bullying Those with Disabilities

Today Zane’s blog has joined the Speak Out Against…Tour at Moxie Writers. Why? Because bullying is something I worry about for Zane. He’s a vulnerable little guy in our big community of people. And while we and the people who love and care for him see all these beautiful and amazing things about him, not everyone will. In fact, some of them may focus on what’s different about him: his elfin ear, his loud vocalizations, the fact that he doesn’t yet walk, the fact that he sometimes drools. Since Zane is non-verbal, he cannot speak up for himself. So he relies heavily on bystanders to do it for him.

 

Pacer is a wonderful resource if you have a child with a disability who is experiencing bullying.  Here is some information they provide:

 

• The Power of Bystanders – More than 50 percent of bullying situations stop when a peer intervenes.
• Students with disabilities are much more likely to be bullied than their nondisabled peers.

As Pacer goes on to say, bullying of children with disabilities is significant but there is very little research to document it.

 

Only 10 U.S. studies have been conducted on the connection between bullying and developmental disabilities but all of these studies found that children with disabilities were two to three times more likely to be bullied than their nondisabled peers. One study shows that 60 percent of students with disabilities report being bullied regularly compared with 25 percent of all students.

The Office for Civil Rights (OCR) and the Department of Justice (DOJ) have stated that bullying may also be considered harassment when it is based on a student’s race, color, national origin, sex, or disability.

Harassing behaviors may include:

• Unwelcome conduct such as: Verbal abuse, such as name-calling, epithets, slurs
• Graphic or written statements
• Threats
• Physical assault
• Other conduct that may be physically threatening, harmful, or humiliating
• Students have protection under federal laws.   

(All bullying information is provided by Pacer).

 

Fortunately, Zane attends an elementary school where there is a zero tolerance for bullying. In fact, the school has created a very warm and welcoming culture for students with differences. It is evident in the staff and the students we encounter in the hallways. I applaud them for the wonderful work they have done to instill acceptance of all.

 

But not all schools are that way. So be sure to act as a voice for your child and empower those around you to do the same.

 

Check out our new releases on bullying and teen dating violence, as well as the rest of the Speak Out Against…Tour here.

The EEG

I was hoping that my update on Zane would be filled with good news. I wanted to be able to report that Zane had completely overcome his seizures that either were triggered by medicine or somehow coincidentally coincided with the start of the new med. Zane did go a full week without any visible evidence of them. Unfortunately, this past Monday, they restarted. And each day, leading up to yesterday, they have intensified. In fact, he had eight of them throughout the course of the day yesterday.

 

Jeff filmed one of his seizures and showed it to the pediatrician. She ordered an EEG—a sleep-deprived study that typically requires 24 hours of wakefulness. It was initially scheduled for December 5th. However, I asked the nurse what we should do if they continue to get worse. Do we take Zane to the ER? Though only a week away, it seemed like a long time to wait for an EEG for someone whose seizures were worsening. She said she’d call the hospital to see if they could squeeze him in sooner. And she did. In fact, she managed to get him an appointment for yesterday after school. He was able to forego the sleep deprivation. We have the most awesome pediatric group ever!

 

The EEG could not have been more ideal. The whole process took nearly two hours. It was a time-consuming procedure to prep his skull and place the many electrodes on his head. This is always made more difficult because Zane loves to wiggle. He knocked a few of the electrodes off. But the technician was extremely kind and patient. Once she was set to conduct the test, Zane was moving and shaking on the bed a bit. But as soon as she turned off the lights, he settled down.

 

The test captures brain wave activity and response to hyperventilation, strobe lights, and sleep. The technician said that Zane’s upset during the set-up phase created some hyperventilation that she was able to record. She moved immediately to the strobe lights. In the midst of that portion of the test, Zane ideally fell asleep. We watched him snooze for at least twenty minutes. He woke up and immediately had another series of seizures, which the tech captured, as well.

 

So now we wait on the pediatric neurologist in Denver (that’s who our local hospital sends all the EEGs to) to interpret the results. Luckily, I have a close friend who has epilepsy. She has been a wealth of information for me. I also know of an awesome mother whose kiddo has seizures (in fact, she’ll likely read this). I’ll surely rely on both of them to enlighten me during this new phase in Zane’s life.

 

As a sidenote, both of my boys received several compliments from the technician about their behavior during the EEG yesterday. I am so proud of both of them. Older brother even entertained Zane with puppets while Zane was getting hooked up. I am so blessed and lucky to have them in my life.

 

Just When You Think...

Just when you think things are finally calming down and finding equilibrium, something else happens. Zane is having seizures. We’d noticed strange behaviors with him over the past week or so—ones we hadn’t seen before—but we didn’t think too much of it. The other night, I even half-joked to Jeff that I thought Zane might be experiencing seizures. Because that’s just what we need: another issue to deal with, as if we don’t have enough of them already. Then, yesterday, I took Zane to his osteopath. I didn’t say a word about possible seizure activity. But one of the first things the doctor asked was…

 

"Is Zane having seizures?”

If I had been a cartoon character, I would have had to pick up my fallen jaw from the floor. “Why do you ask that?” I said.

“Because his eyes look different.”

Then I explained that it had occurred to me that he might be having them.

 

So last night, I took Zane’s big brother to basketball practice. When we arrived back at home, Jeff had observed and recorded what clearly appeared to be seizure activity in Zane.

 

When you have a child with significant medical involvement, you learn quickly to search for new things in his environment that may be the source of the problem. I went to the side effects list for his erythromycin. He started it nine days ago. That matches the time when the seizure activity seemed to begin. Sure enough, it is listed as a possible side effect. I called Zane’s GI doc this morning. Of course, he said to take him off the medication immediately (which we already had). If this is indeed a side effect of the medicine, Zane should be back to normal by Sunday. If not…well, it looks like we’ll be traveling to Denver again to see neurology. What fun!

 

Fingers and toes crossed, positive thoughts put out there, that it’s the medication and not something else.

Where Has the Time Gone?

I realized I hadn’t posted an update in awhile. So…here I am.

 

Zane is suffering through a cold right now, but has his entire entourage of medicines to help him through it all. With the Albuterol and the Flo-Vent, he seems to get over respiratory infections a lot faster than I do.

 

On top of his congestion, the retching has reared its ugly head again and returned. Fortunately, we received the dosing for a prophylactic antibiotic that should alleviate his symptoms. He only started it yesterday, so we’ll see how it goes.

 

On the school front, things are going swimmingly. Zane has the right paraprofessionals in place for him and his fragile medical needs, and it seems everyone is well-trained now. I can finally relax when it comes to Zane’s education. *His brother’s is a whole different story, but I’ll save my rants for my friends and family. Aren’t you all lucky?*

 

Thanks for checking in on Zane. We’re gearing up for our first snow this weekend, so we’re breaking out the footed jammies.  

We're Home

We are home! We’ve been home since Tuesday. However, I feel so depleted from the past month or so (in fact, from the entire year) that I needed some down time. Still do. But since so many of you follow Zane and worry about his well-being, I knew I needed to post an update.

 

First, may I say, the experts at Children’s are awesome! And Zane’s GI doc is one of the nicest physicians I have ever met!! The medical professionals there pulled everything together for us and explained what had been going on with Zane for the past three weeks. The bottom line is that Zane caught a virus that spiraled out of control, causing his UTI and all sorts of misery and discomfort. Unfortunately, his pediatrician had some of the separate parts of what he needed, but never came up with an answer or complete fix for his troubles. We’re glad we went to Denver. Not only did they tell us what had been going on with Zane, but they gave us a plan to help him now and if this ever happens again. They checked his gastrostomy tube for fit and removed some of his granulation tissue with silver nitrate. Plus, his nurses were phenomenal. I am so grateful to them all for helping out our little guy.

 

It wasn’t a whole lot of fun sleeping on the hospital couch in his room. But I learned my lesson not to leave him alone during hospital stays (i.e., his 2007 stay at Phoenix Children’s).

 

Anyway, Zane now has a new dietary and medicinal plan in place, and he is back to his happy self. He returned to school yesterday, and many of his classmates were happy to have him back. In fact one little girl who sat next to him in circle held his hand. It was absolutely precious. We’re thrilled to have the old Zane back.

 

Thanks to all of you for the positive thoughts and prayers.

At the Hospital

After seven hours of driving, we made it to Denver. Zane was cheerful for most of the day, so I called the GI fellow who was on call and asked if she still wanted Zane admitted to the hospital today through the ER. She told us that she and his GI doctor did.

We spent seven hours in the emergency room for some blood work and an abdominal x-ray due to elevated liver enzyme levels. By 9:00, we finally made it to the floor. We still don't know anymore than we did before leaving home, but most signs (to me--a non-medical professional) point to digestive issues. The doctors have expressed their desire to repeat the fluoscopy he just had on Friday and a digestive emptying scan he had in July. I've expressed my disapproval since they both entail the use of radiation. Why repeat what's already been done? My poor kiddo has already been subjected to too much radiation in his short life. We'll see who wins out in the end.

Zane finally fell asleep about fifteen minutes ago and is still awaiting his overnight feeding. I never sleep well on the couch in the room, especially with the nurse coming in every four hours to check vitals. So I doubt that I'll sleep much at all.

I'll post again when I know more. 

To the Hospital

Tomorrow we leave for Denver to admit Zane into the hospital through the ER. While he has a happy moment or two once and awhile throughout the day, he is mostly miserable.

 

I’ve been in contact with his GI doctor about the possibility of the gastrostomy tube being the source of the problem. It’s certainly something they’ll investigate. Back in September—when he and I last visited Denver—I contacted the GI doctor’s nurse to see if they would see him in the office to measure whether he has the right sized button or not. She never called me back. I've been informed that she no longer works there. Thank goodness J Though the fellow told me it is highly unlikely the g-tube button size is the cause of his pain, my intuition tells me it might be part of the problem. We’ll see. Everything seemed to begin with the UTI three weeks or so ago. So it may be urology-related instead.

 

We’re not sure how long we’ll be up there. But hopefully they will be able to get to the bottom of what’s ailing Zane and find a solution.  

Suffering

We thought Zane had finally recovered from whatever was bothering him. He had a day and a half of happiness, and now it is gone. Once again, I took him back to the pediatrician’s office. He needed a follow-up for his UTI anyway. I took both Zane and his brother (who was having separate symptoms) out of school to make yet another visit to the doctor. Zane was in complete agony during the start of the appointment. They needed a urine sample, and he wasn’t cooperating. So over the course of two hours (yes, we were there for two hours), I pumped 16 ounces of formula and water into him. He did not pee. At all. But he was happy! So happy. So the doctor determined that he was most definitely dehydrated. This has happened with him before. These same symptoms warranted a trip to the ER in the past where they declared dehydration as the culprit.

 

However, today he is fully hydrated and yet completely miserable. I’ve noticed a runny nose, but nothing else. He’s still on all his respiratory meds, as well. I’ve given him pain meds in case he’s suffering from a headache. But nothing helps. Another mom, whom I adore, suggested I ask for some additional tests for Zane (I won’t go into details right now). I was so scattered yesterday that I forgot to make the request. So tomorrow I’m going to call the doctor and find out where we go from here.

 

We have never seen Zane this upset for so long. He is usually a very happy and smiley child. But clearly something is wrong. Unfortunately, we think we may have to take him to Denver, admit him to the hospital there, and have them run a series of tests on Zane to get to the bottom of his troubles. I mean, how long do you wait to see if something resolves itself? I don’t know.

 

If you can, please say prayers and keep good thoughts for our little guy. We’re a bit worried.

Friday Update

Happy Zane

Zane woke up this morning in a good mood, showing signs of his happy self again. So we decided he was well enough to go to school. But on the ride there with dad and brother, he started fussing. He was in school for maybe an hour when I had to head to town to pick him up. While the drive into Durango is a very beautiful one, I am growing quite sick of the scenery at this point. Our drive to the school is a 35-minute one. There is only so much iPod I can listen to, only so many mountain curves I can navigate, before it gets old. So Zane has been resting for most of the day with the exception of the ride back to town to pick his brother up from school.

 

Zane’s pediatrician called from her vacation spot to check on Zane. How awesome is that? She reviewed all the supplemental things we should be doing for him to make him well: extra fluids, probiotics, extra elderberry, and respiratory medications. Hopefully, he will rest enough throughout the weekend to be well enough to see his way through a full day of school on Monday.

 

Thanks again for the good thoughts and for the prayers for Zane and his well-being.

Our Second Home: The Pediatrician's Office

It’s been a rough couple of weeks. In the last ten days, I’ve been to the pediatrician’s office five times, which is especially challenging since we live 40 minutes away. We had strep, walking pneumonia, a UTI, and a cold in our household. In the last two days, I made the trip to the pediatrician’s office twice for Zane.

 

Yesterday the school called saying he was exceptionally fussy and crying a lot. I drove into town and checked him out of school. We headed straight to the doctor. Aside from the fact that he didn’t want to be picked up, looked at, or touched, there were no obvious symptoms of what was bothering him. They tested his urine, which was clear. We figured it may be a reaction to the antibiotic, so we formed a plan and returned home where he fussed until bedtime.

 

This morning, he awoke with a snotty nose. I had scheduled a follow-up appointment for this morning in the event he was no better. In the middle of the night, I had lovely thoughts of being able to cancel it and finally get something done outside of chauffeuring kids back and forth from home to town. The dream did not become a reality; we trekked back into town.

 

Anyway, Zane is now being treated for a virus (respiratory/GI) with extra fluids, saline, and respiratory medications. He’s currently sleeping. Again. Obviously, he needs the rest. I am tired. Oh, so tired. And I am sick, but have not had much opportunity to take care of myself. Thankfully, all I have right now is the common cold. Hopefully, things will take a positive turn health-wise for us. I’d be happy if I didn’t have to see another physician for the rest of the year. Unfortunately, Zane has to go in for another UTI follow-up next week. Ugh.

Our Pediatric Visit

Zane saw the pediatrician today. It was a loooonnng visit. Two hours in the office. I reviewed all the possibilities with her:

1. paper eating
2. head banging
3. dad being sick with strep
4. urinary tract infection

Paper eating didn’t seem to be a medical issue this time around. 

 

Head banging: she’s certainly not thrilled about this happening again this year. But based on Zane’s flushed cheeks and demeanor, she thought it looked more like an infection.

 

Ears and throat were clear. Initial strep findings: negative.

 

Urine culture: positive. It appears Zane has a UTI despite the fact that the October 2011 surgery was supposed to be 98-99% effective in preventing further infections. Why can’t our family fall into the 1-2% category when it comes to the good stuff?

 

Zane’s now on antibiotics (as is his dad). We’ll wait for the final cultures to grow before consulting with the Denver urologist. Needless to say, I am pretty upset. This may mean there are possibly two surgeries that were for absolutely nothing.

 

Now I want to bang MY head on the gym floor.

Misery

Zane has not improved at all over the weekend. I would take him to the ER, but the emergency room in our area is useless when it comes to someone like Zane. In fact, many families in our area have had horrible experiences with the hospital here in town. The personnel there know so little about pediatrics that they send almost all kiddos to Denver or Grand Junction. The last two times we took Zane to the ER, the doctors looked to us to answer the medical questions, provide insight into what we think is wrong with Zane. Isn’t that their area of expertise? Not ours?

 

So…while it is torturing me to see Zane so sick and miserable, I prefer to wait until tomorrow when we can see his pediatrician. She knows Zane and can often get to the bottom of what his issues are. Plus, she obviously knows the latest bugs traveling around.

 

Zane woke up with his left eye fused shut. I know that indicates possible pink eye, but there’s no pinkness or redness, no swelling either. From my days of teaching, I don’t remember pink eye causing this degree of misery in a child. He paid Jeff one courtesy smile over the weekend, but—other than that—he’s been crying, fussing, making faces, and wanting to do nothing but be left alone in his bed since Friday afternoon. He managed to sleep through the night, but has awoken a completely unhappy child. And we have absolutely no idea what the problem is. At first I thought he had a low-grade fever, but I honestly think our thermometer is on the blink. One minute it says his temp is 99.3; the next, 95.5.  

Why do these things almost always happen on the weekend?

Something is Wrong

Zane has been absolutely miserable since the end of the school day yesterday. We’re not sure why. The problem is, there were a number of factors that may have caused his misery, and he doesn’t have the words or a communication system to tell us what it is.

 

1) He ate paper in school yesterday. (Stomach issue?)

2) He banged his head hard on the PE floor yesterday (head trauma or pain?)

3) There are tons of bugs floating around in the elementary-school-o-sphere (sickness?)

 

It’s hard to say. We did the requisite checks: temperature, throat, bumps on the head. All seem fine. We administered the requisite care: heating pad to the stomach, Tylenol for pain, Pedialyte for rehydration. Nothing is working.

 

He cried almost immediately after school ended yesterday and didn’t stop for probably two hours. Now each time we look at him, he makes a pouty lip and gets ready to cry. It’s so hard to see him this way and not know what to do to help him.

 

One thing is clear: there has to be more training at school. While I know both the paper-eating and head-banging incidents were accidental, they cannot happen again. This is precisely why I am controlling, hovering, overly protective, and afraid to let go. Because when I do, things like this happen. Pretty soon, my trust in others protecting Zane is going to be next to nil.

 

Okay, I’m through ranting. Zane is usually so very happy and easy-going. This is so not like him. Something is clearly wrong. If any other Trisomy mommies (or daddies) have any ideas, please let me know.

Letting Go

As I sit here tonight with both boys tucked safely in bed, I cannot help but fret a bit. Tomorrow is the first day of letting go. Zane is in kindergarten. At a new school. I've been hanging out with him for the past few weeks, making sure everyone who cares for him is properly trained. They are not fully there yet. There have been mistakes: broken hearing aids, some minor issues with the tube feedings, not knowing him well enough yet to know what he's communicating. There will be more. There always are when someone else takes the reins with Zane. It's not me being critical, it's simply reality. But they'll get better with time.

I'm not worried about their treatment of him; everyone is super kind. But no one cares for him the way I do. As his mother, I am 100 % fully invested in his well being. Plus, I know the ins and outs of his care like no one else in the world because I do it all the time. I can usually read his wants and needs and meet them without frustration. Maybe if Zane was a verbal child, I wouldn't be so on edge about leaving him with people I barely know. He can't tell me if he has a bad day or if something goes amiss. But tomorrow I'll do my best to let go. To send him out into the world without me, albeit for seven hours, because that's what parents do. But I'll think of him throughout the day, wonder how it's going. Because that's what parents do, too.

Home Again

Many of you may or may not have known that we went to Denver. Again. Just about every time we go, Zane winds up with an illness. Must be all those germs in the clinics or lingering in the places where we stay.

 

Zane and I arrived home last night. On the ride, he threw up twice. With his reflux issues, I didn’t think too much of it. But twice in the night—once at 10:00 pm or so, a second time at 2:00 am—he threw up again. Plus, he was running a low-grade fever. We kept him home from school today, and he is getting rehydrated and rested as we head into the weekend. He should be ready to return to school on Monday.  

 

In Denver, Zane has his post-op appointment with the eye surgeon. I knew the doctor’s reaction before even traveling to Denver: absolute disappointment. Whereas in July the surgeon was cheerful and talkative, this time he was straight-faced, disenchantment spelled out on his face. In essence, the surgery was for nothing. While there is no rush to have it redone this year, Zane’s surgeon wants to revisit the notion of reoperating within the next six months. So we’re potentially looking at a spring surgery. I plan to keep in touch with him by phone and email, leading up to our spring trip to Denver.

 

Zane also went to his cardiologist for a routine check of the heart. I was nervous going into this appointment. I think I am now programmed to be ready for bad news. Zane had an echocardiogram (which he loved) and an EKG. I was very relieved when the cardiologist told me everything is still stable. Zane won’t need to return for another two years. She will continue to watch that bicuspid aortic valve for narrowing and leakage.

 

We’re glad to be home. Zane was quite vocal during our stay this time around, which made it hard to read or get much writing done. As always, the people at the Ronald McDonald House were so welcoming and wonderful!

Back to Where We Started

Zane’s amazing pediatrician was able to get us an appointment with a local ophthalmologist today. Come to find out, he knows Zane’s surgeon, having done part of his residency with him. Zane’s Denver surgeon also performed surgery on the local ophthalmologist two years ago, as well. So…today’s doctor is quite familiar with the eye surgeon in Denver.

The good news is that we don’t have to go to Denver until Zane’s follow-up appointment in September.

The bad news (and it’s bad) is that the ophthalmologist is pretty sure Zane released his sutures last week. Unfortunately, the only way to correct that is by having him undergo the same surgery again. He is positive Dr. D. (the surgeon) will recommend another operation to correct what happened. Of course, we won’t know for sure until September, but the doctor today said that the droop in Zane’s eye will not improve with time. The swelling is almost completely gone, so the eye likely will not lift any higher than it currently is. And, to me, it looks like it did prior to the surgery—as though no ptosis fix happened at all.

We’ll have to consult with Zane’s surgeon next month, though, to be sure. There are a few problems:

1) We’re not sure if Zane’s insurance will cover another surgery.

2) We’ll now be traveling to Denver in the precarious months of fall and winter, which we tried oh-so hard to avoid.

3) Zane has to undergo anesthesia and surgery again, as well as the same recovery that he just went through (eye shield, arm immobilizers, eye ointment, pain).

We’re not happy. At all. Right now, the whole trip to Denver last month was (most likely) a total waste.

Good News/Bad News

There is good news and potential bad news.

Good news: Zane is finally over his fever and is feeling well again.

Potential bad news: Because Zane rubbed his eye during a time it was supposed to heal, we may have to return to Denver this week. I spoke with the surgeon’s office yesterday, describing what happened and how his eye looks. The surgeon’s rep. said that if the eye has not healed by tomorrow (Wednesday), we need to return to the office. I was hoping it would look better today, but it is still red, swollen, and even droopy (my greatest fear, as this means the surgery was all for nothing). I want to find out if they’ll simply look at an emailed photo of his eye in lieu of the 14-hour round-trip to Denver. I suspect they’ll want to see him in person. But you never know.

Prayers and good thoughts are most welcomed for a recovery of the eye over the next 24 hours. Going to Denver is so not what I want to do and is very upsetting.

Post-Surgery

Things have been busy since our return from Denver, thus the late-ish post.

Zane is still on the mend from his surgery. Unfortunately, he managed to get to his eye and do some major rubbing (which was a huge no-no). I'm hoping he didn't release the sutures and undermine his whole surgery as his eyelid (today) seems a bit droopy again. There is a tad bit of swelling that remains along with bruising, so maybe it's just that. The surgeon said to call the office if the left eye didn’t completely match the right by Monday 8/6. So I’ll give him a call tomorrow. I doubt there’s anything he can do.

The Friday after surgery, Zane and I returned to the hospital for a digestive emptying scan. It was a part of the investigation into his retching and vomiting. It was pretty much a disaster. The plan was to feed him his formula with a nuclear medicine added to get pictures of his upper digestive system to see how slowly or quickly food moves through. It was imperative that Zane not vomit the contents of the formula/nuclear medicine combo or the test would be ruined. The trouble began with the quantity they planned to give him. Zane normally receives 160 mL over an hour. They gave him 240 mL in a matter of two minutes. I warned them it wasn't a good idea to give him that much. They did it anyway. Only moments into the scan, Zane coughed. That was quickly followed by vomiting. They restarted the test after he stopped, but the test results were considered skewed. Zane continued to whimper and grimace for the next forty minutes—all the time attempting to rub his eye for comfort. The whole test was filled with stress. I was glad to be done with it all.

Since arriving home, Jeff and I were able to get away for chunks of time on Thursday, Friday, and Saturday. His parents came to watch the boys so we could bike ride, tube down the river, and have dinner in town. Unfortunately, Zane wound up with a fever. I blame the visit to Children’s. This will be the third time he’s picked up a bug after a trip to the hospital. He’s still fighting a fever as of today. Though it’s low-grade, Zane is quite miserable and mainly wants to sleep. I haven’t given him any medication to fight the fever, hoping his body will fight off whatever virus he has. I just hope he improves by later today. He has an in-town appointment tomorrow to have another TLSO made. Sounds like grand fun, huh? Poor kid.

He's Out of Surgery

Zane is out of surgery. He went into the whole thing smiling and happy and came out of it—well—unhappy. The gastroenterologist said the endoscopy showed that everything looks normal. However, he took eight biopsy samples to further check for GI issues. The surgery for the ptosis only took ten minutes. Zane is currently wearing an eye shield, which (feisty guy) he’s already tried to pull off. The surgeon said to ask the nurse about arm immobilizers that will prevent him from bending his arms, poking at his eye, and releasing the sutures. I started by using only one, but quickly had to graduate to both of them.

Tomorrow Zane has a last-minute, gastric emptying scan because the gastroenterologist suspects he might have pepsis. So we have to return to the hospital for the two-hour procedure for more fun. We’ll be staying in Denver instead of returning home. Come to find out, a friend of mine from our home town (who I haven’t been in touch with for a month or so until last night) is up here with her sons (has been since May). So she and I are going to get together with the kids this weekend. Listening to her describe her circumstances over the past two months made me realize I have little to complain about. In fact, she stayed at the same extended-stay and had some horror stories of her own.

Anyway, Zane seems to be doing well. He’s only using Tylenol for pain control, which always makes me happy. We’ll see how it goes with the eye shield and the removal of it. I don’t want the kiddo undermining the surgery with his curious fingers.

Change of Plans

We made it to Aurora. A strange and sad energy pervades the area after the recent shootings. We actually shopped at the Target store yesterday, which is across the street from the Town Center where the theater is housed. Apparently, they have a temporary memorial set up there (along with the news media), but we didn’t drive past it. The whole thing is way too sad.

Well, things are not going according to the plan I had laid out in my mind. The Ronald McDonald House in Aurora is filled. We wound up staying at an extended-stay last night. The minute we checked in, a twenty-something guy was on the phone with the Aurora police, stating that he needed an officer to come out because someone stole his “medical” marijuana. There is a touch of the criminal element to this place, so we were hoping for an opening at the RMH this morning. Nothing. Still booked up. So I’ve formulated a change in our plans: if we cannot get in to RMH today, we plan to drive back home on Friday (if Zane is up to it). Then we will stay home for the weekend and return with Justin on Monday in order to make it to Zane’s follow-up appointment on Tuesday morning. We’ll drive back home after the appointment is over. Yes, that is 21 hours of driving, but I refuse to stay here any longer than I need to. It’s pricey to be here eight nights and lacks a lot of the comforts of home. Plus, we didn't pack enough clothes to last the eight days. I had planned on doing laundry at the House. Then there's the shared queen-size bed. While I love Zane's loving touch in the middle of the night and his playful kicks, it makes for a restless night of sleep for me.

Zane has a consultation with a new gastroenterologist today—the one who will do the endoscopy tomorrow. Otherwise, we’re just kind of hanging out, wondering if we should pack up our stuff for a move to the Ronald McDonald House or not. Frankly, I’m ready for all of this to be over, for Zane to come out of surgery without incident, and to be home. He and I will have a month of no travel, then we have to return to Aurora again for his one-month follow-up appointment.

Anxiety

A part of me is dreading the trip next week to Denver. Aside from the anxiety stirring over the surgery, there are other things. Zane and I are going by ourselves, which we’ve done before. It is not easy. The driving part is fine. It’s once we get there. It is just me as responsible party. And I have to lug everything inside the hotel or the Ronald McDonald House while keeping Zane with me: the suitcases, the medical supplies, the Tumbleform chair—all while pushing/pulling Zane along, too. We must make ten trips between the car and the room. Needless to say, a lot gets dropped. If we stay at the Ronald McDonald House, I have to do grocery shopping. Have you ever tried pushing a cart and a wheelchair at the same time? It’s not easy. But that will be us, running into ankles and smashing toes; receiving stares and sympathetic smiles. I know it sounds like I’m complaining. I’m not. Over the past five and half years, I’ve grown used to all that comes with having a child with significant medical needs. I just needed a place to put my waxing anxiety. This seemed like a good place. On a positive note: we're going when the passes are clear and the weather is manageable; I'll have some special time with just Zane, have a little time to work. Maybe we'll even go to the zoo if we can find our way there. Though, I’ll be glad when August arrives and we’re back home. *Fingers and toes crossed for an easy and uncomplicated pre-, post-, and during surgery.*

Endoscopy

In addition to the surgery for his ptosis later this month, Zane also has to undergo an endoscopy. For about a week, the additional fluids from the Pedialyte seemed to significantly reduce his retching. Unfortunately, it has returned. I thought—perhaps—the pediatrician would tweak some additional things with him: medications, lengthening his feeding times, etc. But she’s decided to go right to the endoscopy. Zane’s regular gastroenterologist does not practice out of Children’s Hospital, so he has to see a new doctor this time around. Zane will have a consult the day before the surgery and anesthesia, then have the endoscopy at the same time. He and I will be in Denver for over a week. Not sure what we’re going to do in between the surgery and the follow-up appointment a week later, but we’ll figure it out.

As always, good thoughts and prayers are thoroughly appreciated for Zane.

GI Issues

Things were going so well. For five months, we had no troubles at all. The gastroenterologist told us the ureter reimplanation surgery could possibly correct the retching and gagging Zane experienced. The urologist/surgeon said it wouldn’t. But from surgery until earlier this month, Zane had none of those symptoms at all. Now the retching is back. In full force. It happens at every feeding, and it is distressing to watch. There’s little we can to do ease Zane’s discomfort.

Today I took the boys to the pediatrician. This time, the appointment was not supposed to be about Zane; it was supposed to be for his brother. But medically, Zane always seems to take center stage. Back in October, the GI doctor said the next step for Zane is an endoscopy under sedation. But the pediatrician is less eager to take drastic measures with Zane. Instead, she wants to tweak things with him and see if we can get this retching under control. It has been extremely hot here (including inside the house, as we have no air conditioning). She wants to up Zane’s fluid intake by 12 ounces a day to see if dehydration is causing his problems. So we’ll start there and keep our fingers crossed for the best.

On a separate note, Zane is scheduled to have surgery for his ptosis at the end of July. He and I will have to stay in Denver for a week because of his one-week follow-up appointment. What fun!

Dental Time (Not to Be Confused with Hammer Time)

Zane visited the dentist yesterday for his six-month checkup. The people at that pediatric office are so sweet with him and very accommodating to his needs. Once again, I had forgotten to take the camera with me. I wish I had. He looked so big reclining in the big chair.

Zane loved having his teeth cleaned and was extremely cooperative with the hygienist—until she got to the flossing part. He pursed his lips, turned his head, and tried to wiggle off the chair. The child may not speak a word, but he definitely knows how to communicate. It took some effort on the hygienist’s part, but she managed to floss all of his teeth. Eventually.

He went away cavity-free for the third time in a row. Even the dentist commented on his brilliant and winning smile. He definitely knows how to melt hearts and dazzle people with that beautiful grin!

The Tooth Fairy

Yesterday Zane lost his first tooth. We knew it was coming. After all, he’s nearly 5 1/2. But also his dentist cautioned me about watching his bottom teeth since the gum line is receding. The problem is—there is no tooth to be found. No tooth to put under the pillow at night. We figure he must have swallowed it. Only Zane and the Tooth Fairy know what happened, and neither one of them is telling.

On a side note, Zane graduates from preschool tonight. Bet you didn’t know they have preschool graduation, did you? Actually, it’s a short musical program followed by the passing out of certificates and a BBQ. I’m taking the camera, of course.

Have a wonderful day!

The Courage to Publish

Zane truly has given me the inspiration and courage to pursue my writing and my dream of publication.

My journey with writing has been a long and often laborious one. I began writing seriously in the early 1990s. I remember submitting a short story for my college’s literary arts publication. My writer friends all were accepted. I was rejected. It was devastating. But I never gave up. I took screenwriting classes, dabbled in novels after a fellow writer told me I had a gift for writing description, wrote several novels, and always queried agents and publishers. I was always rejected.

I have often given up, taking long stretches of time away from the writing process, promising to never return. A lot of time, creativity, and energy are taken up in the writing process. Life is often sacrificed, including time with family and friends. It doesn’t pay well, so a second job is almost always a necessity.

But when I see Zane and how very hard he works to achieve things we take for granted: sitting on the floor without assistance, standing, eating, talking—I am inspired to persevere. In many ways, he is my muse. If I feel dejected about my writing life, I can look to him and remember to not give up.

So thank you, Zane, for helping me find the courage to publish my first novel. A novel that has been in the making for ten years.

Here’s the blurb if you’re interested:

When Anna Kincaid has a miscarriage, her world comes crashing to a halt. Grief overwhelms her life and she combats it with prescription medication. Her husband Lloyd does not see the event as tragic. In fact, not ready to be a father, he is relieved at the news. This creates a chasm in their marriage and splits them apart. Both Anna and Lloyd find themselves moving in different directions. Anna finds hope in a young, male colleague named Ben and comfort in her narcotics. Lloyd loses himself in work. Will their marriage survive the miscarriage, or will it always remain fractured?

It's available at Smashwords, Amazon, and Amazon UK

Totally Awesome Kid

Technically, T should be for Trisomy 18. But I pretty much covered that in other posts. So today, the letter T is devoted to Totally awesome kid. Because that’s what Zane is!

Staying Present

It’s been quite a journey. A Trisomy 18 diagnosis can be a rough one, especially when the medical community gives your child a death sentence. Granted, the mortality rate is high. It occurs in 1 in 3000 births, and most babies do not make it to birth or too far beyond. Less than 10 % live to see their first birthdays.

When we were given Zane’s Trisomy 18 diagnosis five days after he was born, we were told he would die. Soon. Like within months. This changes one’s outlook on life. Substantially. After I came to grips with it all, I realized the importance of staying present in the moment. I may not have tomorrow with him. Then that thought extended into I may not have tomorrow with anyone—may not have it myself.

Meeting Zane—knowing I may not have him in my life all that long—made me experience first-hand what staying present means. Before then, it was a nice thing on paper, but I had dreams and goals and future plans. Now I tamp some of those dominating thoughts down a bit, knowing life can throw anything at me at any time. I have learned to remain present, and I am much happier and calmer because of it. At the same time, staying present has allowed me to take more chances because, after all, I may not have tomorrow.

130+

There are over 130 anomalies associated with a Trisomy 18 diagnosis. Here are just a few, some of which Zane has and some of which he doesn’t.

Elfin ears

Clenched hand(s)

Small jaw

Low birth weight

Cardiac defects

Renal defects

Respiratory suppression

Cognitive delays

Motor delays

Seizures

Hearing loss

Non-Verbal

Having a child who is non-verbal certainly presents some challenges, especially when something is wrong. There have been times in the past when Zane is crying, and we have little to no idea why. As he’s grown older, we’ve been able to discern what some of his issues may be. Zane is an extremely happy child. If he’s crying or grimacing, then there’s something hurting him. But sometimes, we don’t know what precisely is bothering him. Is it his stomach? Is he overly tired? Does he have a headache? So we’ll take note of non-verbal cues like a grumbling stomach or poking at his ear.

So it’s not that Zane doesn’t communicate because he does. In fact, he’s pretty good at getting his feelings across. But it’s our responsibility as his family to figure out what he’s trying to tell us. If we don’t, then it’s our fault not his.

We’re not sure whether or not Zane will speak. He babbles a lot and even says dada quite often. I’ve been trying like crazy for months to get him to say mama. There have been a few occasions where I’ve heard him say ama, but it’s certainly not consistent. Only time will tell.

Miraflex Glasses

I am not knocking this company. Seriously, I am not. I understand the theory behind their eyewear. Zane had his eye examination this past week in Denver. When asked about a type of frame that Zane will keep on in conjunction with his hearing aids, the ophthalmologist recommended Miraflex. They’re flexible (as implied in the name) and have a band across the back to supposedly keep them in place. I say “supposedly” because if Zane wants his glasses off, no band is going to keep them on.

But have you seen these things? They look like the glasses Elton John wore in the 70s. Zane’s first pair of glasses was along these lines. Bottom line: they are unattractive and draw more attention to a kid who does not need negative attention. Why—why?—would a company do this to a child? Zane is a seriously cute kid (no bias here), and this would completely detract from his cuteness.

So…does anyone know of another eyeglass frame for kiddos with special needs that does not scream “pick on me!”?

Here's a photo of Zane from three years ago wearing a frame similar to the type made by Miraflex. See. The cuteness is still there, but hidden behind the mask of the glasses.

Long Drive

This past week, Zane and I traveled to and from Denver (a twice-a-year endeavor) for clinics at the children’s hospitals up there. Once again, we stayed at the awesome Ronald McDonald House. This is an amazing and compassionate place for parents to stay while their kiddos are in the hospital or going to out-patient clinics. I cannot say enough positive things about this organization and the volunteers who make it possible to feel at home away from home.

This time, Zane had his annual ophthalmology appointment. The doctor put lenses up to my eyes to show me how out-of-focus Zane’s vision is without the glasses. It’s bad. (Note to all who work with him: Must wear glasses all the time regardless of how often he pulls them off).

He also had a surgery consult. And indeed he has to have surgery this summer on his left eye. There was a GI appointment thrown in for good measure up (really, just a follow-up appointment), and he was the “lucky” recipient of yet another set of x-rays. I’m telling you, I am done with the x-rays. This kid has had way too much radiation in his five years. Unless it is an emergency—NO MORE.

So that said, Zane was a wonderful traveler. We took our time going up, but wound up getting a late start due to cleaning the room and hauling down loads of bags and medical equipment by myself all while pushing his adaptive stroller. So he and I need a break from car rides for awhile.

Kindergarten

Next year, Zane will be in kindergarten. He will be changing districts to attend a school with a center-based program. However, he will primarily be in an inclusive setting, which is simply awesome. Though he doesn’t yet speak, he absorbs and processes what is said to him. So we’re thankful he will have peer modeling to help him on his journey.

We’re very lucky the school Zane will attend has a progressive principle and Special Ed. Director who foster inclusion for kids with special needs. This is not always the case. It’s not the case in our home district, which is totally backward in my mind. But we’d rather take Zane out of his community if it means a better education and being in a setting where he is wanted and accepted. I know when I was in public high school, kids like Zane were segregated and sent off to modular buildings far away from the rest of the school community. It was extremely sad. As such, I now feel deprived: I was never given the chance to befriend someone like Zane.  

Incompatible with Life

One of the phrases commonly told to families just given a Trisomy 18 diagnosis is that the condition is incompatible with life. Not only is this one of the least helpful things to tell a parent of a newborn, but it is also inaccurate.

I am not going to wax philosophical about a lifetime being just as valid whether it is a second or one hundred years (even though that’s true) or step onto my soapbox and ask why some medical professionals think they are the end-all in knowledge (because I certainly wouldn’t do that) or how completely lacking in compassion it is to utter this phrase to a parent (because everyone is compassionate at the birth of a child, right? *cough*).

But seriously, Trisomy 18 is not incompatible with life. Sure, there are challenges, and there are children who live very short lives. But a life is a life, you know. I can think of a person of two in history who I consider incompatible with life, and I’m sure you can, too. And not one of them had or has Trisomy 18. But I would never say this to ANYONE. And the fact that there are children with T18 who live happy, loving, and even healthy lives demonstrates this all the more.

Happy

Zane is one happy and silly kid. It is rare to see him without a smile on his face.

Gastrostomy Tube

Back in 2007, when Zane was still an infant, he had a gastrostomy tube surgically placed in his belly. For a short time after birth, he did quite well with oral feedings. Then seizures hit, and his interest in eating totally waned.

G-tube feedings make life interesting. Zane is on a regimented schedule: three bolus (or short, one-hour feedings) throughout the day; one long continuous feed at night. It makes scheduling appointments or making plans a challenge. We have to coordinate life around his time to eat. Luckily, we’ve managed to be pretty innovative over the years. Instead of always using a pump to feed him (this option allows us to walk away and do other things while Zane eats), we take syringes with us and feed him through his tube in all sorts of settings:

Hikes

Car rides
School
Restaurants
Stores
Even the zoo and Disney World

We’ve learned to ignore the stares, which usually only happen outside our little community. Usually people are simply curious, and we’re okay with that.

Sometimes, the balloon of the button (which is inside Zane’s stomach) will burst. We then have to replace it promptly. At first, we were completely grossed out. Now, it is second nature to place this button with its stem into a hole in Zane’s belly.

Ft. Myers, Florida

Zane was born in Ft. Myers, Florida during our year-long road trip to visit all the national parks in the lower 48. The pregnancy was not planned, and his diagnosis was not expected.

I have written the memoir about our trip in 2006-2007 that includes the pregnancy, birth, and continuation of the road trip after having Zane. I am hoping to make revisions to it and publish it by the end of 2012.

In the meantime, if you’re interested in our story, you can visit our travel website, Our Life on the Road.

Edwards Syndrome and Eighteen

When Professor Edwards discovered Trisomy 18 in 1960, very few chromosomal disorders had been detected.  In fact, it was only in 1956 that the discovery that there were 46 chromosomes to every gene instead of 48 came to light. Because of his discovery, Trisomy 18 is also referred to as Edwards syndrome.

And when you get down to the basics of chromosomes, the “tri” in trisomy means three. So instead of the typical two copies of the 18th chromosome, people with Trisomy 18 (or Edwards syndrome) have three. So they have extra genetic material than most of us.

The Daily Beast

I posted this once before, but here is my article written about the beginning of our journey with Trisomy 18.

The Daily Beast Article



Children's Hospital

Zane and I will be heading to Children’s Hospital in the upcoming days for clinics: ophthalmology, the ptosis surgery consult we’ve been attempting for awhile now, and GI. We’ll try to stay at the Ronald McDonald House again. This time around, I’m actually looking forward to the trip. No surgeries, no slick and snowy passes (fingers crossed). Just a relatively laid-back trip. That is, as long as Zane doesn’t grind his teeth during the entire ride.

Birth Weight

When Zane was born he only weighed 3 lbs, 14 ounces at full term. In fact, he was born on his due date. This is one of my favorite pictures of him from the NICU.

Aunt Sara

Last year in April, Zane lost his Aunt Sara in a tragic car accident. She was one of those few people out in the world who truly connected with him. She would visit, so anxious to hold him. They would snuggle and cuddle together so sweetly.

We miss you so much, Sara.

Skiing with the Z

This past week, my brother was in town. On Saturday, we all went skiing at Purgatory with him. Once again, the volunteers at Adaptive Sports did not disappoint. In fact, they were amazing! The weather was warm, and Zaner managed to get in six runs (one more than Justin). But don't tell Justin I said that. He's very competitive.

Here's one of the few non-blurry videos we have from the day. Jeff is racing ahead to catch up with super-speedy Justin.

Spread the Word to End the Word Campaign

It's tomorrow. And it's also every day. The R-Word website sums it up more perfectly than I can:

"The R-word is the word 'retard(ed)'. Why does it hurt? The R-word hurts because it is exclusive. It’s offensive. It’s derogatory. The R-word is hate speech."

 

How "retardation" went from a clinical description to a word of derision

 

"When they were originally introduced, the terms 'mental retardation' or 'mentally retarded' were medical terms with a specifically clinical connotation; however, the pejorative forms, 'retard' and 'retarded' have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when 'retard' and 'retarded' are used as synonyms for 'dumb' or 'stupid' by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity."

Consider taking the pledge. I have.

Head Injury Update

My apologies for not updating Zane’s blog sooner. If there's one consistent thing in life, it's craziness.

Zane seems to be back to normal after his spill last week. We watched him closely over the weekend. His tiredness slowly subsided, so he likely will not need any more medical care such as a CT scan. He has a well-check with the pediatrician this afternoon. I’m sure we’ll discuss the incident, and she’ll give him a thorough examination.

Thank you so much for all the kindness, concern, good thoughts, and prayers for Zane. As always, they mean the world to us!

Head Injury and the ER

It’s been a rough end of week for Zane—and really for all of us. On Thursday, Zane wound up with a head injury from a fall at school. Right now we are light on the details. When I arrived to pick him up, I was more concerned for his well-being than about gathering all the information about the accident. Especially since I had been told he was crying for twenty minutes already. On the ride home, I called Jeff. We both thought it was best to consult with the pediatrician. The nurse asked if I could take him in right away. I drove straight from the school to the doctor’s office (40 minutes away). Though the pediatrician didn’t see any overt signs of trouble, she said there was a possibility of a brain bleed and to be on the look out for the following signs:

·         Extensive crying (which would indicate pain since he can’t use words to tell us how he feels)

·         Vomiting

·         Unusual sleepiness

Zane did well on Thursday night. He even smiled for the nurse while we were in the office. But Friday, he was not acting like himself. In the morning, when he normally has major doses of energy for exercise, Zane fell asleep in my arms (not at all typical for this five-year-old). When I jostled him after a half hour, he didn’t really want to wake up. Throughout the day, he took two more naps. I figured maybe he was tired from the trauma and excessive crying from the day before. I didn’t worry—too much.

Then around 6:30—after returning home from gymnastics with Justin—Jeff told me Zane slept the entire time we were gone. Jeff picked him up and held him while we watched a program, and Zane drifted off to sleep in his arms again. This is when we debated whether to call his doctor or not. Jeff called. So at 8:00 last night, Jeff and Zane made the trek into town to the emergency room. There was talk of doing a CT scan, but Zane needs to be sedated for one of those. His doctors don’t like to sedate him at the hospital in town because they don’t have a PICU in the event he codes. So after four hours at the ER, the two returned home with a watch-and-see order. Needless to say, we are all very tired. Zane slept until roughly 9:00 this morning. But likely this is from his late night out. Hopefully, all is well with him, and we won’t have to take any additional medical steps regarding his injury (such as going to Denver).