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Bennett's Endoscopy/Colonoscopy

Wednesday, May 18, 2016

Early this morning, Bennett was admitted to Children's Medical Center in Dallas for a endoscopy and colonoscopy.  These tests were to explore what might be causing Bennett's concerning GI symptoms and to investigate concerns Bennett might be dealing with an additional diagnosis, Crohn's disease.

Of course, for anyone who has endured a colonoscopy, the worst part is not being put under for surgery but not being allowed to eat the day/s prior.

The colon cleanout prep we were given started on Monday night at 8pm with a suppository.  Then, on Tuesday, Bennett was allowed nothing but clear liquids.  By Tuesday afternoon, he had to begin drinking 6 glasses of Gatorade with 1 capful of Miralax each.  The day, full of not eating, ended with an evening suppository.


I struggled to figure out how to make this as painless as possible for Bennett.  Brian and I agreed he would be best to send Bennett to school as it would allow for plenty of distractions and the minimization of food.

I picked up a new Star Wars spoon for Bennett at Target, with which to eat his Jello, and a new Star Wars water bottle, in which he could drink his clear liquids.  

Recently I have become aware of how much Bennett loves looking forward to things.  He asks all the time when he can get a new toy (to which my reply is often "on your birthday" and "at Christmas").

So, once I knew he was going to have to go back to the hospital, I told him to start thinking about which toy he wanted so he could pick it out.

We decided to try to help mitigate Bennett's anxiety about not eating and having to go back to the hospital by helping him anticipate a toy he really wanted.

Parenting confession: It's really hard to parent in a non-consumeristic way when your child has a chronic disease and is constantly being poked and prodded.  Toys and treats are easy rewards for frequent requests for patient compliance.  But, I do try to minimize randomly buying things as much as possible to save his interest in toys and treats for situations such as these.   


Since we had to be at the hospital so early in the morning, Bennett and I stayed at my sister's house in Dallas.  I am thankful for her extra set of hands and support since Brian needed to stay behind with Oliver and Avonlea.

Bennett did a really great job with the "colon clean out."  It was hard but he did it.

He also did well during admitting for his surgical procedure.  We were all thankful when it was over. 


After the 1 hour procedure, the GI doctor met with me to tell me what she found.  Basically the doctor had good news and bad news:

The good news is that upon exploration, the GI doctor was able to better understand Bennett's anatomy to realize that part of the reason his Small Bowel Follow-Through test showed he is dealing with gastric emptying is because part of his colon has been removed (generally the area between #6 and #8 in the picture above).  

I'll be honest, I don't know enough about Bennett's colon to well explain his anatomy but I can at least explain that Bennett has had several colectomies in his life (removal of small parts of the colon). 

According to the GI doc, the fact that part of his colon is missing likely explains why Bennett's food goes through his body faster than normal.  The doctor said that at some point she would like to add some over the counter medicines to his daily regimen to improve this issue.

The bad news is that the GI doctor may have found the reason for Bennett's troubles and, unfortunately, it's going to require more surgical procedures to resolve it.

What the doctor found is called an intestinal stricture.  A stricture is a narrowing of the intestine due to scar tissue or inflammation that risks the slowing of bowel movements or blocking them all together.

Bennett's stricture is severe.  He has only a 6mm hole with which poop can flow.

How big is that, you ask?  The picture above shows 2 inches.  Can you find 6mm?  That's how tight the stricture is closing in Bennett's intestine.

The GI doctor believes this stricture is what has caused Bennett's rectal pain at times and why he is going to the bathroom all the time. She thinks Bennett can't physically empty his bowels because the hole through which the poop must go doesn't allow him to do that all at once.

Picture found at https://www.trustedtherapies.com/articles/126-how-crohn-s-disease-changes-your-intestines

To address this issue, Bennett's GI doc is first going to discuss this issue with Bennett's surgeon at Scott and White as well as with other surgeons at Children's Medical Center in Dallas.

But, unless there is a change in protocol, Bennett's GI doc suggests the next course of action will be to use a series of dilation balloons to slowly stretch open the stricture over time.

In order to stretch the area appropriately, Bennett will need to undergo this dialation procedure (under anesthesia) every 2-4 weeks for about 6 months until the area is big enough to allow Bennett to have bowel movements normally.

If this doesn't address it, we will be forced to go back through surgery.



As far as Crohn's goes, the GI doc, from her perspective, feels like the biopsy is likely to come back negative as everything looked good to the naked eye when she was doing the colonoscopy.  In addition, she believes we now have all the answers to why Bennett has had so many problems.

However, we won't know for sure until the biopsy results come back.

What is interesting is that intestinal strictures are common in Crohn's.  So, I dunno.  Is the stricture from inflammation and scar tissue from previous intestinal surgeries?  Or is it one more symptom of underlying Inflammatory Bowel Disease?  Hopefully we will know soon.

Either way, Bennett will be headed back to the OR in the coming weeks.  :::sigh:::

Can somebody let us off this roller coaster??

Abnormal Tests Lead to More Tests

Tuesday, May 10, 2016


Last Tuesday, Bennett underwent several tests to investigate whether or not he is dealing with something more than cystic fibrosis when it comes to his gastrointestinal health.  

After having a series of interactions with a variety of people since his surgery in February, I have become more and more concerned that Bennett might be suffering from Inflammatory Bowel Disease.

Thankfully, Bennett's GI doctor took my concerns seriously and agreed further testing would be valuable.  


The first test that Bennett underwent is called a Small Bowel Follow Through (SBFT). During the SBFT, Bennett was given barium in his g-tube and then given a series of x-rays throughout the day (about every 30 minutes/1 hour) until the barium made it's way from the stomach all the way to the rectum.  

The goal of the SBFT was to figure out how long it takes food to go through Bennett's body and to catch any irregularities in his bowel.  


Bennett's results from the SBFT showed food is actually going through Bennett's body too rapidly, making him need to go to the bathroom more often than he should need to go.  In addition, the SBFT showered there are irregularities in Bennett's bowel that need to be further investigated.

In fact, the Radiologist commented on Bennett's Small Bowel Follow Through test: "The transverse colon and sigmoid colon segments appear abnormal as discussed above...areas of involvement due to inflammatory bowel disease cannot be excluded." 

The second test Bennett underwent is called a Fecal Calprotectin test.  This test was to investigate whether or not Bennett is dealing with used to detect inflammation in the intestines.

Unfortunately, we learned last Tuesday this test also came back as "abnormal."  
  
So what's our plan?

Since we cannot rule out that Bennett is dealing with Inflammatory Bowel Disease (IBD), Bennett's GI doctor has ordered an endoscopy and colonoscopy.  Therefore, Bennett will be admitted for this outpatient procedure next Wednesday, May 18th.

During his scope, Bennett's GI doctor will take a biopsy from his bowel in order to better identify whether or not Bennett is dealing with IBD/Crohn's Disease.

We are surprised by the results of the tests and are certainly nervous about the upcoming scope as we hope the results show Bennett is not dealing with IBD (people with CF are 17X more likely to deal with Crohn's Disease than the general public).

Hopefully, the biopsy will back clear and we can investigate other possible causes of his gastrointestinal inflammation.

But, if he is, we will deal with it just as we have everything else - one breath at a time.

From Flower Girl to Fundraiser

Thursday, May 5, 2016


Several months ago, my sweet cousin Megan, who works at Kendra Scott contacted me about holding a Cystic Fibrosis Foundation fundraiser in Dallas in honor of Bennett.  I was so grateful for her thoughtfulness so eagerly accepted her offer! 


Megan holds a very special place in my heart.  She, along with her younger sister, Kendal, were flower girls in Brian's and my wedding back in 2004.  


Actually, scratch that, Megan was supposed to be there flower girl in our wedding and her little sister was supposed to be the bell ringer.  


Shortly before the wedding, Megan's little sister got scared at the thought of having to ring a bell down the aisle and announcing, "the Bride is coming!"  So, big sister Megan happily switched roles with her.


These little sisters were by far the best part of our wedding!  It's hard to believe Brian and I just celebrated our 12th wedding anniversary.  Once eight-year old Megan is now well in to college.  


Megan (on the left) might not be a little girl any more but she's no less brave or willing to step up when there's a need. This is why I was so touched by her desire to help us raise money for a cure for Bennett this year.  Not only did she advocate her boss, Jenn (on the right) to throw this special Kendra Scott event for us but she did so in such a way that a lot of money was raised within 3 hours for the Cystic Fibrosis Foundation in honor of Bennett: $1695!!!!!!!!


Kendra Scott stores are the best.  They are such delightful places to visit.  The color bar is pure eye candy.


The night we attended the Kendra Scott Plano store event, it was bustling with people.  Kendra Scott offers so many simple pieces of beautiful jewelry.  The company was begun by a woman and is based out of Austin, TX.  So, needless to say, ladies in Texas love their KS.


These are just some of the pieces I fell in love with.  The jewels are so fun!  Avonlea and I were equally delighting in all the sparkles! :)


Of course, one of my favorite sparkles showed up right before we left for the night.  My sweet friend and Univ of Missouri Kappa Delta sister Megan came after work to support Bennett.  Megan, who lives in Dallas, has been at every one of our Kendra Scott parties to support Bennett.  What a gem she is!  And what is special about Megan, beyond that her heart is one of gold, is that she and I share a lot of sweet friends in common who live too far away to be able to physically be at Bennett's fundraisers.  But Megan does such an amazing thing for me, she constantly reminds me that she is representing all of them and brings them with her in spirit.  Megan is currently pregnant with her first, a baby girl, so it won't be long before Megan and mini-Megan will be shopping Kendra Scott together! :)


The kids did really great at the party.  They ate up a couple of the cupcakes and then went outside the store to play on the sidewalk.  Apparently, at one point in the evening, Oliver approached one of the customers who was buying something and said, "You know, when you buy that, you are helping to find a cure for my brother."  Then, according to the store clerk, Oliver brought Bennett over to the customer to see and said, "see, this is my brother Bennett.  He has cystic fibrosis.  You are helping him"  The customer, a middle aged woman, seemed touched.  As she finished up her purchase, she smiled and said to me, "I hope he feels better soon."  It was a really special night for our entire family, for which I am thankful.



Megan, thank you (and Kendal) for bringing joy to our wedding day...


...and thank you, your family (pictured) and each of your co-workers for loving and supporting our now-family-of-5 in the midst of Bennett's battle against cystic fibrosis!!  We love you!!

New diagnosis (but this time not for Bennett)

Wednesday, April 20, 2016



A few days after Bennett came home from the hospital in February, I gathered up all my strength and took Oliver overnight for a 3-day psychoeducational assessment in Dallas.  (Psychoeducational assessments are psychological tests, like a QI test, for example, used to analyze the mental processes underlying a child's education performance.)

My mother suggested I give myself and our family a break and reschedule the assessment for another time.  Surely a traumatic two-week hospital stay would be enough to warrant cancelling the appointment, she said.

But I explained to her that as much as I needed rest and truly didn't want to go, I knew I needed to move forward for Oliver's sake.  Rescheduling the appointment would only delay getting Oliver the help he might need.  I had been willing to move heaven and earth for Bennett over the last two weeks.  What I did for one child, I wanted to do for the other.

Not only did my mother end up supporting my decision, but she even offered to help me fill in the gap by staying in Waco to care for Bennett and Avonlea while Brian worked and I went with Oliver.

Although CF has been our family's biggest battle, Brian and I have watched our oldest child suffer quietly for a long time.  I was ready for some answers.

Play therapy for separation anxiety and severe sleeping issues began at age 3 for Oliver.  We tried medication at age 6.  By 1st grade, Oliver began loathing school and showing academic concerns. In 2nd grade, we changed from a traditional school model to a Montessori school model to see if that helped his enjoyment of learning at school.  But his struggle in school, his separation anxiety and his inability to sleep in his own room all continued.

We needed answers.  We decided to have Oliver undergo psychoeducational testing so we could get a better handle on what might be going on.  We were blown away by the results.

Oliver has been identified as having dyslexia (likely dysgraphia too) and as being gifted.  We were able to see on paper what we already knew in our gut: Oliver is very bright but he also really struggles.

Reading is challenging, writing is challenging, spelling is challenging, focusing is challenging, and organizing is challenging for Oliver.  You'd never know because he is able to use his great strengths to hide his great weaknesses.   Oliver's input of data is effortless but his output is fractured.

Oliver has a fantastic ability to verbally understand above his level.  But, if asked to demonstrate what he knows, he can't always do that in a traditional way.  This is what it's like to have a learning disability - to have a part of the brain that works so efficiently and then have another part that struggles so much.  When not supported, it can be a frustrating existence.

Oliver's issues have been ongoing for years.  I have shared some about it here, here and here.  I have thought long and hard about sharing our newest understandings about Oliver publicly.  But the reality is he is already decided to be public about it (if you don't believe me, ask his dental hygienist and his hairdresser).  And, I'm OK with that.

I think there is something important about being open about these struggles.  Shame grows in the dark corners.  There is nothing to be ashamed about with regard to having CF, dyslexia, learning challenges, anxiety, depression...the list could go on.  These are very human things.

But what I have found fascinating about receiving Oliver's new diagnosis is how similar it is to receiving Bennett's diagnosis.

With Bennett's diagnosis, I went through shock and then came to acceptance.  I spent many months late at night ferociously educating myself on his condition.  I immediately began to implement therapies and identifying experts in the field.  I joined communities of people dealing with CF so I could connect quickly to allies who understood what I was going through and could guide me through the next step of the journey.  I began to learn new vocabulary and ask thoughtful questions.  I hit roadblocks and had to learn to overcome them.  I grieved.

Oliver's diagnosis has been no different.

The first year of Bennett's diagnosis was the hardest for me.  CF has a large learning curve.  It took me a full year to understand his diagnosis and become confident in my ability to coordinate his care.

I am hopeful it won't take me so long to come to a similar place with Oliver's learning disability diagnoses.  But I am thankful that I can look back on our journey with Bennett and remind myself things will naturally improve as our family acclimates to this new diagnosis.

Like CF, dyslexia looks different in every child. Like CF, dyslexia is often unseen and unknown. Like CF, many people know about it but don't know what it's like to live with it.

We have already placed Oliver with a skilled dyslexia specialist who is working with him one-on-one.  We have a great psychologist and a fantastic psychiatrist working with us and him to find ways to support him with issues of anxiety.  I have identified some really great moms who have children with Oliver's diagnosis than have been hugely helpful.  And Oliver's school and sweet teachers are working very hard to support him in the classroom.

Things will continue to only improve as Oliver becomes a stronger advocate for himself and can tell us all better what he needs.  I'm just in the thick of it right now - at the beginning of it all and it's hard.

Parenting is hard.  Having two children with special needs is hard.

I don't always know what is best.  I don't always have the answers I want.  I don't always know how to balance being a mom, being an advocate and being a support to my child's growing independence.  I don't always know what is normal, not-normal, acceptable, not-acceptable, good or best.  And living in that space of figuring it out is like being blind in the dark crawling on my knees feeling my way around.

But Brian and I embrace the gift that children with special needs provide.  Having special needs regularly reminds us to be appreciative when things are easy, to be kind to others even when things are different for them and to see God's creation as being beautiful and wonderful in all ways.

Life is a beautiful mess and having children who struggle - one who struggles to stay healthy and another who struggles to process the world in the same way most of us do - reminds me of these things daily.

It's probably most difficult for me when the variety of systems in which we live and work daily don't always account for and even support these differences.  But while I'd much prefer not to see Bennett or Oliver struggle, I recognize there is a gift embedded in each challenge.

I often tell the boys: "you do hard things well."  And they do.  Our family does hard things well.  But, just to be totally transparent, we do hard cries well too. :)

VLC 2016: State of the Foundation

Thursday, April 14, 2016

I apologize this post got lost in my drafts and never posted!  This is the second (and last one) of my VLC 2016 posts...  


The CFF's Volunteer Leadership Conference (VLC) is an annual networking gathering of CF community parents, volunteers and CFF staff.  Each year, I attend to learn more about what the Cystic Fibrosis Foundation (CFF) is up to and to hear the latest on the CFF's effort to find a cure for CF.  

Each year I have attended VLC, I have tried to blog about my experience so others who couldn't attend could still gain the valuable information.  In a previous post, I shared the "State of the Science" in CF and where we are in our quest to find a cure for CF.  In this post, I want to share the "State of the Foundation" and where the Foundation stands.  

One of the reasons I am so active in CF Foundation work is because, as a fundraiser for the CFF, I consider it my responsibility to pay attention to how that money is being used to improve the lives of those with CF.  Here are some of the ways the CFF is using our money well:



There are three main new things to highlight about what's going on in the CF Foundation these days.

The first new development is the additional support to Care Centers.  The second development is Compass.  The third thing I wanted to highlight is the variety of ways the CF Foundation is trying to listen to patients voices.

At the end of the blog, I have posted pictures of some of the people I met this year at VLC.  Although I appreciate the knowledge I gain at VLC, it's getting to meet the people that I love most.
  

Let's look more closely at the CFF's investment in and additional support for Care Centers.  The CFF says they are working to recruit more physicians in to CF care.  There are three programs recently developed to help them to do this.  The first is a program called PACE which is an effort to recruit adult pulmonologists.  The second program is called DIGEST which is an effort to recruit pediatric and adult GI specialists.  The third program is called ENVISIO which is an effort to recruit pediatric and adult endocrinologists. In addition to recruiting more physicians to CF care, there is also a push to recruit more pharmacists, physical therapists and opportunities for mental health care coordinators in the clinic.  This is great news for our CF community.  We need more doctors educated in CF care.


The second development I wanted to share is that there is a new collection of services available for the CF community called, "Compass."  The CF community has a lot celebrate these days.  But as more people live longer with the disease, it has become apparent that living longer with CF brings up new issues.


The CFF is working with a renewed focus on patient assistance services.  Compass has been created to provide resources life transitions, transplants, living and food expenses, transportation to and from care, housing, pregnancy and adoption, scholarships, funeral assistance, hospice, mold remediation, fitness programs and much more!


Compass has four main goals - to help with insurance issues, to identify financial resources, to help with legal issues and to find other resources related to life with CF.


People with CF often struggle with health insurance issues.  Compass can help with evaluating insurance plans, troubleshooting insurance issues, understanding medicaid and medicare and getting help with insurance appeals.


Compass can help with financial resources, such as medication co-pays, out of pocket expenses and applying for social security and disability benefits.




The great thing is Compass is for anyone regardless of insurance status or income level.  Compass is for people with CF and their families (even the care teams).  Compass is always free and confidential.


The third development I wanted to share was how the CF Foundation is working to better listen to the voice of people with CF and their families.  There will be a peer-to-peer mentoring pilot program for adults beginning in May of this year (the CFF just hired someone to oversee it).  There will be a small online interactive conference created by and for people with CF in September of this year.

There is also going to be a Pilot Learning Network kicking off this year, which I am intimately involved in, that will begin facilitating better collaboration between clinicians, patients/caregivers and the CF Foundation.  I'll share more about this soon but it's connected to the Design Meeting I attended last year: see here and here.



There was so much more to this year's conference but I thought I would just summarize my favorite parts.  To read more about the CFF's 2016 VLC, check out this storify: https://storify.com/cf_foundation/vlc-2016.  Or, listen to a recording of VLC here: https://www.cff.org/Take-Action/Events/Volunteer-Leadership-Conference/


I thought I'd share just some of the pictures I took of amazing CF parents and CFF staff members I had a chance to spend time with in DC.  These are my friends Cathy and Erin, both CF moms.


This is Dr. Bruce Marshall, VP of Clinical Affairs at the CF Foundation.  A really great guy, Bruce works daily to improve CF care at the CF Care Center level.  I have had the privilege of working with Bruce on developing the CF Care Model of the Future and working together to improve ways clinicians and people with CF and their families can better collaborate to improve CF care.


This is Dr. Preston Campbell, the CF Foundation's new President and CEO.  Not only is Preston a really smart guy, he is compassionate and approachable...oh, and, if you can't tell, he's really tall!


This is Carin, a CF mom whom I first met online.  Yay for connected CF Mamas.


This is Amy, my local CFF Executive Director.  I have known her since Bennett was born.  She's amazing - dependable, caring and "in it" for all the right reasons.  I am so thankful the CF community has Amy and even more thankful to consider her a friend.


This is Andy, the only person with CF who was allowed to attend VLC all weekend.  (Due to cross infection issues, only one person with CF is allowed to indoor CF Foundation events.)

Here are my impressions of Andy:
a.) he looks so dang healthy (you'd never know he has CF),
b.) he's super funny,
c.) he's a vulnerable guy who, in his effort to communicate support for mental health issues in CF care, is honest about his own struggles depression,
d.) he's an sweet daddy of two children and
e.) it's clear he's on a mission and is using every day to improve the world around him (particularly for those in the CF community)!  

It was nice to meet Andy in person for the first time, introduce myself and for him to say, "oh, I know you!"  It feels really great to have an online community that feels as real as in person when you actually get to confirm that you each exist in the flesh.


I love these women!  Noreen (left) is a CF mom of a young adult with CF.  Maureen (purple shirt) is a CF aunt and a HUGE advocate for the CF community.  Kelli (to my left) is a CF mom of a teenage boy.  She led VLC the first year I attended.  And Mary (far right) is a CF mom of two young boys with CF.  


While it can seem like there are lots of CF mamas at the conference, CF dads are represented as well.  Jarrod, on the left, is a phenomenal CF dad.  He runs the non-profit 2 Lungs, 1 Fight and recently wrote a blogpost about VLC on the CFF's blog here: https://www.cff.org/CF-Community-Blog/Posts/2016/My-3-Takeaways-From-the-2016-Volunteer-Leadership-Conference/ To the right of the picture is Darryl, a dad of a young boy with CF.  Even though Darryl's little boy is young, Darryl is an on-fire CF dad who is going to do whatever it takes to get his son a cure.  I feel honored to know so many amazing people who are working tremendously hard to find a cure for their children and are, in the process, doing the same for my son.

"Training the Ninjas"

Saturday, April 9, 2016

Since Bennett's surgery in February, we have been focused on addressing Bennett's residual bowel issues through pelvic therapy.

When we were in the hospital for Bennett's latest rectal prolapse surgery/colon resection, one of the pediatric surgeons I really like had a very early morning heart-to-heart talk with me.  She explained that, as a pediatric surgeon, she was highly concerned that Bennett has had so many rectal prolapse surgeries.  "Four surgeries and the child is only 6 years old?  I'm really concerned something else is going on" she told me.

In that conversation, she pushed me to look further and not settle for believing this is purely CF issue. It was both alarming and reassuring to have this particular conversation.  It felt good to know that somebody else feels like this isn't ok nor is it normal.  But it felt scary to see how clearly uncomfortable she was with how he is doing.

When Bennett left the hospital, our follow-up plan was to allow him to heal, to do some bloodwork and to begin pelvic therapy.  Everyone agreed that his body was going to take some time to get back to it's normal again.  The bloodwork would reveal celiac or other markers of bowel inflammation.  The pelvic therapy was to evaluate and teach Bennett's pelvic muscles to work correctly.

Thankfully, the bloodwork showed Bennett does not have Celiac disease and no markers for bowel inflammation.  That's why, for now, our attention has been on utilizing his pelvic therapy sessions with a physical therapist.

I wrote about Bennett's pelvic therapy during a previous post.  But here's an update since then:

During his second pelvic therapy session, Bennett was given electrodes (stickers with little metal buttons on him) which were connected through wires to a computer.


The physical therapist let Bennett connect the electrodes to give him a sense of confidence during the process.


Then, Bennett helped place his own electrodes to his bottom and when watched the computer screen.  As he squeezed his muscles, the computer graph would go up and down.  It didn't take long for him to get the hang of it.  The therapist would ask him to squeeze for 1 second and then relax, then squeeze for 1 second and relax.  After about 10 of those, she would move to squeezing for 10 seconds and then relaxing for 10 seconds.  The goal is to strengthen his pelvic muscles and give him greater control over the area.  (The therapist was wearing blue gloves, which was intriguing to Bennett.  When he inquired about them, the therapist offered him to wear one too, which he did and enjoyed.)


The way biofeedback works in pelvic therapy is that the computer shows when the body is acting or responding.  Halfway through the session, Bennett had a ah-ha moment.  He stopped and said, "oh, I know what we are doing! We are big and it is small" (meaning we, the people, are big and it, the sphincter muscles, is small).  "We are training, like we are the masters...training the ninjas."  I wanted to laugh so hard.  What a sweet child-like way to put in to words what we were doing.  Yes, we were retraining the muscle.  And yes, it was as if we were masters simply training the ninja.


At our third pelvic therapy session, the physical therapist used a different screen.  This time, she used the electrodes to work on "opening" and "closing" the sphincter muscle.  This was represented on the screen with circles.  When Bennett "opened" his sphincter muscle, it caused the circle to get bigger.  The opposite happened when he closed his sphincter muscle.  It was a great visual for a kindergartner to use to connect what he was doing physically to what the therapist wanted him to do.

At the end of the session, the therapist had Bennett sit on the potty.  She noticed he doesn't have good posture on the potty.  Although he is trying to help himself be more comfortable and "help the poop come out," she says his posture needs to be changed so he can help him be more comfortable and to minimize the strain on his body.

The therapist asked me about the height of the stool is that Bennett uses on the potty.  She also pushed to make sure he is relaxed on the potty and sitting more stable.  It is her believe that these things influence his issues with rectal prolapse.

Overall, I think pelvic therapy is good.  It seems like these kinds of things would be obvious - open your body and poop comes out.  But, from what I understand, the body's elimination process is quite complex so things can easily get mixed up.

Something that came up during our last pelvic therapy session is that the therapist is concerned that his poops are not quite right.  She has suggested that we bulk up his poop with fiber.  She's also wondered if his bowels are not fully emptying itself when he has to go.

This, on top of a comment from his kindergarten teacher last week about how much class he misses each day due to being in the bathroom at school, recently emphasized even more the conversation I had with the pediatric surgeon several months ago to really push to find out what's going on with Bennett's GI issues.

The CF GI doctor, Brian and I are considering putting Bennett through a more tests to investigate what is going on.

It's SO hard to want to do more tests when our entire family is tired of the pokes, the pricks, the tests and the results.  But we also don't want to miss it if there is something we can do to improve his health and quality of life.