Bowel Management (part 2)

⚠️ WARNING ⚠️ this post is about poop, or rather teaching a child how to do it, and keeping him clean and healthy. If you’re squeamish at all please skip this post. This post is not meant to provide medical advice in any way, shape, or form; it is merely a documentation of our experiences and meant to serve as support for other families in similar situations. If your child has severe issues with bowel movements, tummy troubles, urination, or other elimination for any reason please seek medical advice.

4 months after starting bowel management we had a follow-up appointment, at which they told us to continue daily enemas for a whole year.  This was not what I was expecting/hoping to hear.  Not going to lie, I cried about it.  The enemas were hard on Mr. J, on me, and on the rest of our family.  We had to be home by a certain time each night to do them.  We had to re-arrange events and schedules or administer the enema early.  If we didn't make special arrangements Mr. J got violently sick, which was even less fun.  we were 8-ish months in when I decided mornings would be easier because we rarely have anywhere to be in the mornings.

After about a year of the enemas Mr. J asked me when he would be done with his "washouts."  He was noticing that he was different and I wouldn't be surprised if he was also noticing the stress it was causing me as well; he's a perceptive boy.  When we had a travel mishap with his catheter I reached the end of my rope and called the colorectal clinic to ask about the next step, it took them 6 weeks to get us in.

When the appointment finally arrived we went through the usual x-rays, paperwork, and interview with the nurse.  They agreed that it was a good time to move-on in the process.  We were prescribed 2 squares of chocolate x-lax each evening and 1 tablespoon of pectin three times a day.  The next week was daily x-rays and phone calls to make sure everything was working the way it needed to.

Here's where we started to go off book.

I tried everything they suggested to get Mr. J to take the pectin.  I mixed it with water for him to drink, I mixed it with juice, I mixed it in applesauce, used a dosing syringe to give it to him straight, in yogurt, on sandwiches, and smoothies.  I asked for more suggestions from other parents and came up empty.  Mr. J said that the pectin made everything "taste slimy" no matter how much I diluted it or what I mixed it in.  To compound the problem, any time he had the pectin at night he vomited in the morning.  Add to the pectin issues his complaints of tummy aches starting 30-60 minutes after having his laxative made me sad.  I reduced his dose to 1.5 squares after consulting with the nurse, but we still struggled with the pectin.  I tried working up to the correct dosage, but Mr. J refused to eat anything he even suspected I had put pectin in.  So I gave up.  He was still taking the ex-lax, but had had lost any control he had had of his bowels.  He was back in pull-ups full-time, and going through 3 or more most days.  So I cut his ex-lax to one square per day.  This helped some, but he was still smearing through the day and getting an even bigger mess at night.

At this point we worked it out that he would go to the bathroom every morning before breakfast followed by a rinse in the shower because he's just too big for me to be wiping him.  Unfortunately this whole process was taking nearly as long as the enemas did.  Equally unfortunate were the times when he had larger accidents during the day and had to be changed like a baby.  It was during one of these that he tearfully asked me when he could wear big boy underwear again.  It broke my heart to see him so sad and feel so broken.  I was determined to find a way to get him what he wanted.

This is where we are now.  Mr. J is completely off the ex-lax and we are taking it one day at a time.  If ever he goes a day without pooping He gets a square.  More than one day and he gets an enema.  He is still struggling with control, but it isn't as bad as it was.  He is still in pull-ups full time but sometimes makes it through a day without an accident or smear.  He's not in big boy underwear yet, but we are working towards it and are closer than we were even a month ago.

Stay tuned for another update in a few months. :D

Light of the World Garden

There is a place in Utah called Thanksgiving point.  It is famous for its museums, golf course, petting zoo, and gardens.  They host an annual tulip festival that we (my mom and I) visit ever year.

The flowers at the tulip festival are breathtaking.  Tulips of every imaginable (and some unimaginable) varieties are everywhere.  There is so much color and life.  You just really have to see it to truly understand the beauty of it.  It really is incredible.


These sprawling gardens are divided into various smaller gardens such as a "secret garden," an "Italian garden," the "Monet pond," a rose garden, and so much more.  A few years ago (3 to be exact) we stumbled upon a new garden installation.  This new garden featured bronze statues of  Christ from various stories in the New Testament.  Front and center in the garden is a life size statue of Christ walking on the water.  A placard behind this statue explained that the artist had plans to install all the statues full size at some future time.  Every year when we have gone back we have looked for the full size statues.  In the mean time we have thoroughly enjoyed the smaller versions.  That first visit was a few months after the accident, I was still wearing my neck brace and using a cane to get around.  Coming face-to-face with my savior in that garden was powerful and overwhelming in many ways.

Christ walking on the water

The woman touching Christ's garments (Mark 5:25-30)

This year when we went to the Tulip Festival we took my sister-in-law, Jessica, who has never been before.  When we finally got to the Light of the World garden we were given a wonderful surprise.  While we were enjoying the sweet spirit present in the garden a woman approached us.  Introduced herself as Angela Johnson, the artist that created the sculptures.  We were a bit stunned.  Then she went on to explain that KSL, a local news station was there filming for a special story about the garden and wanted to use some footage of us in the garden with our kids.  We were happy to oblige.  Then we started talking with Angela and it came out about our first visit to the statues.  She grabbed the reporter and asked them to interview me for part of the news story.  They asked me a few questions and to share some of my feelings about the garden and about my favorite statue.  I was able to talk with Angela about when the full size statues would all be installed and about how much I have enjoyed visiting the garden each year.  When we were finished they asked me to send some pictures of Ethne for them to use in the story.

This was nearly three weeks ago.  The story aired last night (Sunday).  Here is a link to the story.

We are so excited to see the full sized statues next year when we visit the gardens.

Christ carrying his cross

With Hope

I was talking with a friend recently and she told me about a conversation she had with another of her friends about grief.  They were discussing how long it is ok to grieve after the loss of a loved one, especially children and spouses (the second friend lost her husband two years ago).  Both came to the conclusion that it is ok to grieve for the rest of your life.  The first friend then asked the second how she continues to live her life each day.  The second friend told her that she does it for her kids and for hope.

I have often been asked the very same question, "How do you do it?  How do you live each day after such a great loss?"  Usually I shrug my shoulders, which is really a terrible answer, or rather, not an answer at all.  But then I think that maybe I was so noncommittal about my answer because I didn't really know how I do it myself, or maybe because it has been difficult to put it into words.  But I think I found my words...

"Hope is what guides me, it is what gets me through the day and especially the night.  The hope that after you're gone from my sight it will not be the last time I look upon you."  ~"A Knights Tale"

I was watching this movie and these words really stood out to me because they ring so true.  The friend of my friend is right, I get myself out of bed every day for my boys and for my husband.  They are my motivation every day because they get up and live every day too.  The boys may not feel the loss of Ethne as keenly as Lawrence and I do, but I think they feel it at least a little, but even if they don't feel it at all, they need me, and I need them.  And Lawrence needs us too.  However, there are some days that are harder than others, even with boys that need me and life that is required to be lived, sometimes the thing that pulls me out of bed and gets me going is hope.

It is a hope that nothing but the Gospel of Jesus Christ can give me.  No where else can I find the teachings of eternal family.  No where else can I learn that I will get the chance to not only see Ethne again, but also raise her in a perfect world where she will not suffer temptation.  No where else can I find the peace in the knowledge of a loving Savior who was born to this earth to suffer not only my pains and sicknesses, but also my grief and sadness, and that of those around me, and all mankind, as well.

It is armed with that hope and that knowledge that I am able to "do it."  To get myself out of bed every day, despite a huge hole in my heart and my family, to continue to follow the counsel of the Prophet and other church leaders, and to continue to read my scriptures, pray, and attend the temple.  Because, without that hope, and without that knowledge, none of it would really be worth all the effort.  So instead of giving up I hope and because I hope I can live.

So it is with hope that I go into this new year and face all the really hard days (our 3-year angel-versary, Ethne's birthday, other holidays), because this new year brings renewed hope that I am one more year closer to seeing Ethne again.