Amid the chaos, we’re also off to camp. Today, is our second day here – third counting check in and the wine and cheese social that was planned for the first day…that was new.

Camp is a relatively new experience for us. This is our second year, and we’re in the mountains of Colorado with Adam’s Camp. While last year was centered on constant therapy which was difficult and likely not the ‘camp’ experience J thought he was getting. This year, he’s getting nothing but adventures…and socialization.

Adventures are in the form of canoeing, hiking (woodsy walks), rock wall climbing, swimming, horseback riding and more. Socialization in bonding with peers. Finding commonalities, ways to communicate, adjusting to new situations and new people.

Oddly enough, we think he’ll do very well. We think he’ll progress, have fun, have the ‘camp’ experience he was unable to have last year. We’ll have campfires with s’mores, swimming with family, hot tubs, watching a train that happens to be just close enough to stim to and just far enough away that it’s not disruptive.

No tents, but a borrowed condo. Bug spray, flashlights just in case, glow in the dark bracelets (just because) and lots of sunscreen. And I write this to tell you I never thought this would be an experience we would have for our family. I never thoughts he’d be able to, that a camp would be set up to focus on a child with special needs, while entertaining siblings and allowing parents to attend workshops of disappear for their own time to reconnect…all while providing scholarships to do just that.

Quite simply, with the roller coaster we’ve been on for the last 8 years, I never thought we would have made it this far. And if we have, everyone can…at least that’s my hope.

Have you? What experience have you had that you once thought impossible?

(Photo By: Chris Dag / Flickr)

I knew that my body was giving everything to this little person growing inside me. I knew my life would never be the same; that our lives would never be the same. There were no words to express the happiness I knew my belly contained. I knew that this little being was my angel; my Guardian Angel here to help me make my life what it was to be. Nothing anyone can ever tell me will change my feeling on this. He is my angel and in his own way he teaches me, and everyone around him to take note and see what is truly important in life. No number, no ‘disability’ will ever define him. He truly is magical. My Angel.

I have not formally introduced myself.  My name is Chaney.

I am Mary’s mom.  Mary turned 5 in October.  She loves music, horses, Dora and going outside.  Mary uses a DynaVox VMax for the majority of her communication.  She also has a trach and a g-tube.  Mary is diagnosed with Arthrogryposis, Agenesis of the Corpus Callosum, a seizure disorder and various brain abnormalities.  Overall, she is pretty comical, creative and brilliant, I’d say.

TodayI am volunteering in Mary’s classroom. (Well, that isn’t the whole truth… I can’t find a nurse to fill in for my regulars… I have to go with Mary or she can’t go to school.)  Anyhoo… Today I am bringing my guitar to her classroom and will do a music therapy session.  I met with her teacher on Thursday and we talked a little bit.  Apparently Mary is in a “Psycho Class” this year!  LOL!!!  She is in a regular education Universal Preschool classroom in our home district.  It is awesome and I am glad to have her there.  It just happens that this year, she has peers who are extremely loud and hyper, with no self-control. 

So this is my music therapy plan for a bunch of crazy 4-5 year olds during the holiday season!

1. Waving “Hello Song”

2. “Dreydl Song” with controlled clapping

3. “March of the Toy Soldier” listening with follow-the-leader moving/tapping on body parts

4. Christmas Carols Sing Along while taking turns with instruments

5. “We Wish You a Merry Christmas” with verses about clapping, stomping, tip-toe, etc.

6. “Peace On Earth” listening while relaxing on the floor

7. “Line-Up Song/Good-Bye”

This should take about a half hour, I think.  My hope is that some of these things will help the children control themselves in a group situation and the teacher will learn some musical strategies she might be able to use. 

At any rate, it should be fun! 

When my daughter Melissa was a newborn she refused to breastfeed.  My wife Kathy tried diligently and even got help from the nursing staff.  But before this challenge could be resolved, we ended up in neonatal ICU with a metabolic crisis on our hands.

We left the hospital, taking our sickly child home.  We were scared to death.  We had learned that  her disease required “diet management”.  We were sent home with several cans of “powder” that we would measure on a gram scale, mix with water and then feed to Melissa in tiny 50cc baby bottles.  We were taught that we had to get a “target” volume of formula into her each day or she could become dehydrated and face another metabolic crisis.  And we knew that with each crisis came elevated ammonia and associated brain damage.

Of course like many babies, there was “spit up” after each feeding.  Since we were trying to manage intake volume, we had to estimate the volume that went in—and came out.  To help with this, I put together a notebook where we logged each feeding and totaled that day’s volume.  I caught a lot of grief from Kathy who thought this was overkill … but it worked for two years.

By the time Melissa was two she was still significantly delayed in many areas.  She didn’t walk until after her second birthday.  We tried feeding her solid food in addition to the bottle but she would spit out anything that went into her mouth.

The doctors called it an oral aversion.  Unlike other babies who seem to put everything in their mouth, Melissa put nothing there.

Then the day arrived when she began resisting her bottle.  We struggled to get the target volume in each day, but fell farther and farther behind.  In only a few days, we were faced with dehydration (as predicted) and a severe episode of metabolic de-compensation that resulted in a protracted hospital stay.

That was the beginning of a tube-feeding journey that continues to this day!

We left that hospital visit with an NG feeding tube.  A nasogastric or NG tube is one that is passed through the nose (via the nasopharynx and esophagus) down into the stomach.  Feeding is accomplished by pushing a liquid formula through the tube.   The formula can be slowly pumped over a long time period, or can be injected using a syringe (known as a bolus feeding).

Before journeying home with our new feeding method, we were taught to insert the tube.  Much care is required because misplacement of the tube can result in it entering the lung rather than the stomach and the formula can be aspirated (very dangerous).

Rather than freak out, we took this in stride, seeing it as just another step in a life time journey of managing Melissa’s unique care.  And Melissa thrived with this new feeding approach.  Whether at home or in the hospital we were able to effectively manage her dietary intake.

Then on an office visit to the metabolic specialist we were confronted with their decision that Melissa should have a permanent G-tube.  There has always been considerable debate about the preference of a G-Tube over an NG-Tube.  We soon discovered that  The Tube War was on.

A gastric feeding tube (or “G-tube,” or “button”) is a tube inserted through a small incision in the abdomen into the stomach.  Placement of the G-tube is done in surgery.  We were told that there could be frequent trips to the E.R. to replace the tube if it was pulled from the stomach. And we were advised that the passage through the skin was an open wound and subject to infection.

Now remember this was happening 20 years ago.  There was no internet.  There were no support groups or lists of parents to talk with. Our research was limited to medical journals, the medical support team, and our own intuition.

We knew that one of the underlying medical conditions associated with Melissa’s disease was suppressed bone marrow and low white blood cells.  This left her especially vulnerable to infections.  And once she got sick, her metabolic condition would quickly deteriorate requiring hospitalization.

We had many concerns about the G-Tube.

First it was surgery and we were unsure how Melissa would tolerate anesthesia.  The doctors couldn’t give us any assurances.

We were also concerned about maintaining the tube.  Melissa has always been a “rough” sleeper and we were concerned that we would be facing countless trips to the E.R. for replacement.

But our biggest fear was that the G-tube site would be an ongoing source of a potential infection.  Melissa had become fairly stable with the NG tube feedings and we felt like making a change was tempting fate.

And in the long term, we hoped that Melissa could learn to DRINK her formula (which we call her “milk”).  We feared the convenience of the G-tube might provide a disincentive to drinking—which we knew would be challenging because the formula takes “nasty”.  Consider that it contains pre-digested proteins and other amino acids, it is actually like drinking vomit.  And it smells like it as well.

So after a lot of discussion and soul searching, we decided to continue with NG feedings.

To our surprise, the medical team aggressively objected to our decision.  The first shots of the WAR had been fired.

The doctor went as far as suggesting that this decision was somehow placing Melissa’s life in danger—which of course it was not.  They told us that if we continued NG feedings, Melissa would never eat.  And they reinforced what we already knew—there is a social stigma associated with a tube hanging from one’s nose!

We stuck with our decision, and here’s what happened.

For the past 20 years, Melissa has used the NG tube as the primary method of eating!

Did the continued use of the NG tube hurt or endanger her? By my rough calculations, an NG tube has been inserted through Melissa’s nose down to her to her stomach over 25,000 times (four times/day, 365 days/year for 20 years less a couple of year when we kept in in place continually).  And in all this time has been no evidence of any structural damage to her nasal pathway; no evidence of reflux after eating; and there has never been an instance of tube misplacement with the potential for aspirating her formula into her lung!

In fact, by the time she was four years old, Melissa was inserting the NG tube herself.  I’m certain that if it hurt to put down the tube (something many parents claim) then she would resist doing it.  It has only been a problem when she has a cold and a stuffy nose.

And what about the predicted “oral aversion” that would result from long-term NG tube usage? My answer is that Melissa’s oral aversion is what CAUSED her need for tube feeding and is NOT THE RESULT of using it.

Over the years this viewpoint has been affirmed as we saw that the scope of her oral aversion went far beyond eating.  Most noticeably is her aversion to putting a toothbrush in her mouth.  This has resulted in predictable results as plaque builds on her teeth.  She now has her teeth cleaned professionally each 60 days.

How about the feeling that using a feeding tube was akin to giving up the fight to get my child to eat normally? Yes, I certainly felt this way.  We were so frustrated with this that we enrolled Melissa in a “feeding clinic” at the University of Minnesota.  Through this program, experts used every technique they knew to introduce new food/textures to her in hope that she might overcome her aversion.  But after months of trying, even these experts admitted that her aversion was greater than our ability to overcome it.

We ceased the therapy and continued to work with Melissa by introducing new foods and textures.  Today Melissa eats a very narrow selection of foods.  Some of her eating is driven by social pressure.  And I am convinced that other times she actually WANTS to eat. Amazing!

And what about the social stigma of using an NG tube? Here is an area where the predictions were most accurate.  That’s because people (children and adults) can be so very cruel.  As parents Kathy and I never let it bother us.  In fact, it sometimes helped people understand that Melissa was sick (she doesn’t LOOK sick).  For several years when she was young, we left the tube in place for days at a time.  We took her out and about without a second thought.  As Melissa was able to do the tube herself, we would insert and remove it for feedings.

While I might be prejudiced, I think she was really cute even with that tube.

When Melissa started school we sent her formula every day and she would go to the nurse’s office and do her own feedings.  That continued into high school.

Melissa Drinking her Milk

From time to time we have been successful getting Melissa to drink her milk. Then we discovered a substitute “high potency” formula that tasted good enough to drink.  She now drinks this for lunch at work (together with Cheetos and Jello and a juice pouch).

But now at age 22, Melissa is feeling the social stigma.  She refuses to use her NG tube in front of her boyfriend, opting instead to drink it.  To make this easier, we have started dosing her regular milk with chocolate which masks much of the foul taste, making it drinkable when she is with friends.

I think this could become the “new normal” for her as peer pressure and the desire to conform overtakes the convenience of the NG tube and the taste of her milk.

One final note. Please remember that I am not a medical professional and I am not endorsing one style of tube feeding over the other.  Each child is unique.  And only a medical professional who is familiar with that person’s background is qualified to render an opinion.

My only hope is that our experience might somehow help others who are faced with a similar decision regarding their child’s long-term feeding options.

My two year old has been in a stage of imitating everyone around her lately.  As these things go, I find it pretty adorable. 

Until she tries to imitate her six year old brother.  Not so cute anymore.

Her brother, Will, was born with a rare chromosome deletion that few kids in the world share.  There are other, more specific labels we use including severe apraxia, probable mitochondrial disorder, and the one presenting the problem here….autism.

So, when we’re driving in the car and I hear Will scripting what he sees on billboards, it’s part of the routine.  Even funny.  But when the two year old begins to imitate his very apraxic speech or name things that simply aren’t there (as Will remembers billboards from months ago), it makes the hair on the back of my neck stand up.

During family movie night, when he starts getting excited and begins to flap a bit, I might smile and rub his back.  Unfortunately, the two year old notices the attention he is receiving and begins to flap as well, thinking it is the coolest new thing.  Whoops.

I’ve tried talking with her, telling her that I enjoy her just the way that she is.  But she’s a two year old.  She imitates.  It’s what they do. She has also noticed, despite my best efforts, that Will gets more than his fair share of the attention at times.

In the past week or so, I’ve seen less and less of this imitation.  In fact, she’s beginning to disagree with him when he is labeling billboards long gone.  (“There no hamburger there.  Will, no hamburger.”)

I should probably be relieved by this, but instead, I’m surprised to find that there’s a part of me that’s not.  I knew it was a stage that would pass.  What I didn’t expect was the pang of sadness I’m feeling at the change. 

Over time, she will begin to realize that his brain works differently than hers, and I’m just not ready for it yet.  So for today at least, I’m enjoying the innocence.

Then

And Now

Before I became a mom, I did everything at high speed.  My long legs galloped through airports, trade shows, malls, corporate hallways- purposefully propelling toward my destination. I assessed people too quickly, rushed through conversations, and often missed the simple beauty of everyday life.

Fast forward years later, when my second daughter Zoe was 5- I was standing in a small social circle of busy moms lamenting about their general lack of patience. I joined in agreement, quick with my own confession.  “No, you  are so patient..” a friend argued. I have seen you with Zoe.”

Zoe was in kindergarten then, her metabolic disease, epilepsy, and other issues stabilizing enough so that she was able to begin kindergarten with a full time aide. Each day we arrived at school, with her walker, her power wheelchair and all the tools she needed to start her day. This mom had probably seen me slowly trailing behind Zoe in her wheelchair, with Zoe’s miniature little old lady walker slung over one shoulder, the other loaded down with her two backpacks.

With Zoe it has always been about time-the extra time that she needs. When she was a baby we kept count of the frequent infections, hospitalizations, and developmental milestones that were supposed to occur at certain times, yet always passed us by. Meetings with specialists spent looking forward in time – will she walk? will she talk? when ? will she ….? and the worst  questions that sometimes would  linger unanswered ….how long can she? will she ever? .. how long will she…?

Zoe has taught me all about time. .That to feel and do her best, she must never be rushed, especially by the high speed of life that used to consume me, Now I ” tell Zoe time”, gently reminding others that snack time takes 20 minutes, assisted bathroom breaks fifteen. That there is travel time getting out the door in her walker, down the driveway, into the car, packing her walker alongside the power wheelchair, mealtimes that include medicine. As Zoe’s mom, I also have learned to negotiate extensions of time for Zoe.  Time to adapt activities so she can participate fully, negotiated time to try different medicines so that we can stay out of the hospital, time to explore new therapies and new approaches to life’s everyday challenges.

Zoe is now 8, and ironically time is a concept  she has trouble mastering , the sequence of days of the week, and the time segments of each day -instead she memorized her routines. She has mastered living fully at her speed,  the way she dances- moving her upper body to music in her own sensational groovin’ kind of way-  every time she hears a tune she likes. She sings along to Radio Disney , many beats behind the music, but content to sing out the lyrics to each song. She gives hugs in a fierce, slow motion, emptying of the heart , complete way – like no child I have ever held. And the day the eye doctor told us she would eventually lose her vision, she began to really show me the way she see’s life- and all the beauty within it , in a way I had never known.

Time does discover all truths, that a silent and sick little girl can grow up to be a sassy little sister, who laughs at her own jokes, and makes life fun for her family even when she is not feeling well. She has taught us to embrace the simple things in each day; the way she  appreciates  the scent and beauty of the roses from Daddy’s garden, to  see the brightest colors in the crayon drawings her big sister makes for her, to savor the experience of rolling out pizza dough and spreading sauce, and the importance of making the most of morning cuddles. And she has taught me that there is a time to run -and a time to wait, a time to stand and even a time to fall- but most importantly ..that for those who love, life is timeless.

Apologies for last week.

This was us:

Earning us three days in the hospital

but this was taken yesterday:

I’d say she’s doing much better.

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Also posting at Three Ring Circus.

I left my 2yo medically fragile son for five days…count ‘em five days AND nights, to attend BlogHer’10 in New York City. It was business, it was pleasure, it was exhausting…you name it – I felt it.

Mostly I felt terribly guilty about going, but given the awesome opportunity I just felt I could not pass it up. I was really worried that my son would be devastated. He wasn’t. Nothing went wrong, it was an uneventful week without me. *Sigh* I mean it might have been nice if he had cried..ya know, just a little. (My ego was only slightly bruised.)

This kid is tough as nails. Just like his mom.

Back to the conference.

One of the highlights of the conference, for me, was getting the opportunity to sit down to lunch with so many #SpecialNeeds bloggers.  We had an awesome card swap going and it was great to connect faces with names, finally.  Truth be told I don’t think Ellen actually ever sat down to eat, she may not be human.

Birds of a Feather lunch

Ellen, Shannon, JennyAlice & Me

Another highlight was not a BlogHer sanctioned event.  On Saturday night, I took a crazy cab ride to the Lower East Side along with Julia and Catherine to a small co-op bookstore to attend a reading of My Baby Rides The Short Bus.

Four of the writers (two of whom were fellow BlogHer attendees, Shannon and JennyAlice) read their essays and the entire room was moved, inspired and frustrated right along with them.  I could totally relate.

So yes, I left my son, but we both grew. It was worth it.

When does the risk outweigh the benefit? How do you decide if medical treatments for your child are more harm than good?

Making the tough calls has never been easy, and apparently the weight of this burden never goes away.

I remember my son, 4 months old, critcially ill and crying incessantly. Crying because he was in pain. Crying while I, his mother, held him down so that the radiologist could insert a central line into his neck. But what choice did I have?

Nine surgeries later and the choices are still hard. It’s not just the major decisions that we wrestle with, but the day-to-day ones as well.

• Should we try out the trial medication after his transplant in hopes of warding off another disease attack on his new kidney?
• Should we push the specialist to put him on the kidney transplant list now, instead of waiting for him to gain a few more pounds?
• Should we give the elective daily growth hormone injection, although he is terrified of shots and already has to endure injections that are non-optional for his survival?
• Will the pressures of being of small stature as he enters adolescence and then adulthood outweigh the pain of injections now?

Everyday, as special needs parents, we are forced to make decisions small and big that will forever effect our child’s life and health. It’s a heavy burden to deal with. Prayer, support of friends and family and an extrememly resilient little man are what eases the burden for me, but it’s always there….like a backpack I lug around all day, everyday. Sometimes my load is a little lighter and I’m always grateful for that. I wonder. How do you guys handle these burdens?

How do you make the tough calls?