30 June 2010

Update: More Miralax, a Colonoscopy or Nothing At All

Bennett is continuing to have intensely painful bowel movement episodes on a daily basis.

Bennett has regular dirty diapers, many that are not painful.  But at least once a day, usually 30 minutes or so after a feeding, Bennett will begin screaming in agony until he passes whatever is through his colon (after which he will begin to coo like nothing ever happened).

These symptoms have been going on for some time.  But it was two weeks ago that we noticed the rectal prolapse and about that long since Bennett was placed on 1/4 cap full of Miralax (a stool softener) per day.

Concerned that these episodes are not going away and that the rectal prolapse is possibly continuing, we called the GI doctor yesterday.  The doctor's nurse was finally able to get back to us this morning.  His recommendation: increase Bennett's Miralax to 1/2 cap full of Mirlax per day.  Then, if he does not improve, go forward with testing, including a colonoscopy.

Concerned that more Miralax would not solve the problem (his stools can hardly get softer!), we called his CF doctor to make sure she was aware of this recommendation.  The CF doctor called us back today to talk about his symptoms and our concerns.

After a few minutes of listening to us, she came to the conclusion that Miralax doesn't make sense and that his symptoms were, in fact, "normal" for a CFer.  Since she disagreed with the GI doctor's initial recommendation, she planned to contact him herself to discuss the issue.

While on the phone with her, we brought up our concerns that maybe Bennett's pain was from the hypermotility of his intestines, rather than constipation.  The CF doctor countered that while that could be the case (Bennett's soft stools could be making his intestines spasm to get the stools through), any medication used to treat Bennett for this symptom could put him at risk for constipation and/or a bowel obstruction.

Therefore, the decision was made to do nothing.

At first, this was disheartening to hear.  How can we do nothing about his pain?...pain that has been going on for months and months and months.

But we finally resigned that CF is a complex disease that affects many organs.  We are fighting to keep him alive and sometimes that is at the risk of allowing him to experience pain.  For we know, it's not worth treating one symptom to find that we cause another.

Apparently, based on our conversations with other CF families, many CFers deal with this issue and have been told the same thing: it's normal.

We'll continue to consider other symptoms in addition to this one.  However, for now, when people witness these episodes of our baby in incredible pain while pooping, we must only nod "we know" and wait for it to pass.

Poor little guy.

28 June 2010

What We've Learned So Far - Tip #2: Become An Expert

Sometimes knowledge is power...sometimes knowledge is scary/painful (particularly when that knowledge is acquired from the internet).  However, we have found that learning as much as we can about CF and CF-related topics has empowered us to deal with Bennett's disease.

Becoming experts on our son's condition, we been able to make more informed decisions and ask appropriate questions to our doctors and nurses.  It has also helped us to explain how the disease works to others.

Here are the ways we have found have made us "experts" of Bennett's disease:
1.) Buying informative books (such as "Cystic Fibrosis: A Guide for Patient and Family" by David M. Orenstein)

2.) Connecting with other families with children with special needs - in person, through blogs and on Facebook.

3.) Visiting informative and helpful websites regularly (i.e.,

4.) Utilizing Google Alerts for words like "Cystic Fibrosis" and our son's mutated gene "621+1G->T".  This allows us to get instant information about CF or Bennett's gene mutation when new article, study or blog is updated or published.

5.) Asking lots of questions to Bennett's medical providers when a new treatment, test or new medication is prescribed.  We ask lots of questions until we feel satisfied we fully understand the reason behind the new treatment, test or medication.  And them we often google more information so we can better grasp how this fits into the overall care of Bennett's disease.

6.) Trusting our intuition and our child's intuition 

27 June 2010

Going To Grandma's

We are on our way to Grandmom's (aka Great-Grandmom to Bennett and Oliver) house today.  Well, just Breck and Oliver, that is.  Brian and Bennett are settled at home until Momma and Big Brother return in a few days.

A few weeks ago, we decided to have Breck surprise her Grandmom with a visit (something she hasn't done since before Bennett was born).  Typically, Breck would have brought both boys with her as Brian is studying/in school this summer.  However, Grandmom has been sick so we decided not to bring Bennett with us.

So, for one week, we are each parenting one child per parent and enjoying the benefits of giving our full attention to each child.

Momma is already missing her little boy (knowing those four top teeth will likely have come in before she returns).  And Daddy is already missing his big boy, although he will enjoy toddler phone call updates along the way.  But we are thankful for the opportunity for Breck and Oliver to visit Grandmom for a few days together.

26 June 2010

Pictures: A Day In The Life - Brotherly Fun

The boys spend much of their day in the living room playing.  Oliver really enjoys crawling under Bennett's Jumperoo so that Bennett can "walk" on his back.  Sometimes Oliver will roll over and tickle Bennett's feet.  They both just cackle so loud when Oliver does this. 

Bennett had managed to "poop" through his clothes this morning.  Oliver plays on the floor nearby while Bennett just hangs out...

...but Oliver didn't want to leave Bennett out of the fun.  Oliver does a great job sharing his toys.

Sometimes, though, Bennett is just happy to watch the action.

Particularly when the action involves Oliver banging on his xylophone (what he calls his "drums") and singing as loud as he can.  The choices of Oliver's songs often include: "The Momma Song", "The Bennett Song" and/or "The Daddy Song" - each is a rendition of the same "song" (i.e. banging and yelling) with different words (i.e. Mommy!  Daddy!).  It's pretty hilarious.  And we can't help but watch as well.

25 June 2010

What We've Learned So Far - Tip #1: Organize Your Hospital Bills

While we have not been doing this long, we have already learned alot about raising a child with special needs.  We felt it might be useful for us to write down tips we have learned about raising a child with special needs (more specifically, a child with Cystic Fibrosis) to share with others.  We have much yet to learn but here's what we've learned so far:

What We've Learned About Raising A Child With Special Needs #1: Organize Your Hospital Bills

Three hospitals, two surgeries, a 39 day NICU stay and doctor visits nearly weekly have taught us alot about dealing with hospital bills.  Here are our tips regarding organizing:

1.) Keep everything!  
Every bill/letter from the insurance company and hospital is important. 

2.) Keep a call log.  
Every time you all the doctor/hospital about a bill or your insurance company, keep track of the date, the number you're calling, why you are calling, the person's name (or number) that you're talking to and the outcome of the phone conversation.  If someone is supposed to follow up with you, write the date of your next intended phone call.

3.) It "pays" to wait when it comes to paying doctor/hospital bills. 
We want to pay the correct amount and what we owe.  But sometimes, that takes a while to sort out.  Do not pay a bill until you are 100% insurance has paid their part correctly.  We have been billed both an incorrect amount and also an an amount that insurance should have paid for.  Therefore, we delay paying doctor/hospital bills until we are confident the remaining balance is accurate and is, in fact, the patient's responsibility.

4.) Pay attention to all medical bills. 
Misbilling does happen.  Look over every bill and don't be afraid to call and ask questions.  We sometimes ask for an itemized bill.

5.) Use folders to organize.
For our organizing purposes, we made four folders: one for the incoming medical bills, one for EOBs from the insurance company, one for bills that need to be paid and one for completely paid bills.  Every time a medical bill comes in, we look in our EOB (Explanation of Benefits) folder to see if there is a corresponding EOB for the bill.  If not, we put the bill in the "incoming medical bill" folder.  If so, we staple the bill and EOB together and stick it in the "needs to be paid" folder.  Once paid, we put it in the "completely paid bills" folder.  On a weekly basis, we look in each folder and evaluate what we're missing, such as bills with no EOBs or EOBs with no bills.  We also spend time looking to make sure our insurance has paid everything correctly.  Lastly, we look to make sure any outstanding bills have been paid.

Cystic Fibrosis is a chronic illness so we know we will deal with medical bills for the rest of our life.  We'd love to hear other ideas of how to organize this special needs issue!

24 June 2010

Pictures: 8 Months

Well, Bennett will be 9 months within a week so we felt it time to post his monthly "at-home mammarrazi photo shoot."

We had hoped he could sit up by himself but he still struggles to sit by himself for very long.

Bennett is becoming more and more engaged with his world.  Here he laughs at a game of "Peek-a-boo."

Watching something out of the window.

Bennett has 2 bottom teeth right now.  But he is cutting all four of his top teeth at one time!

It didn't take too long for Big Brother Oliver (still in his pajamas) to put a premature end to the photo shoot.  He dove in, lied on the floor and laughed.

Since it was evident...

 that Bennett wanted to play along...

We considered the photo shoot over.  (But it was nice while it lasted.)

23 June 2010

Breck's Thoughts: Significant Ceremony

I almost lost it during his baptism on Sunday.  Brian and I were sandwhiched between the Priest on one side and Bennett's Godparents on the other.  Surrounding us was the church community, friends we knew and friends we did not.  Bennett, dressed his cream-colored delicate handmade baptism gown, was snuggled in my arms.  Oliver sat with a friend nearby.

My eyes welled up with tears and my bottom lip started to quiver.  I could hear the sound of the Priest blessing the water.  I saw the faces of the congregation peering on.  And I wanted to cry. boo-hoo, actually...

...the kind of boo-hoo that involves your shoulders and causes your makeup to run black strips down your face.

For a moment, I just almost couldn't handle it.

The moment had been planned since before Bennett was born and here it was...more than a year after we found out about his surprise conception, eight months after his unexpected early entrance into the world and our being told that his "situation" might not be "compatible with life", seven and a half months after we had to accept that, all things being the equal, we might one day bury our own son.

The Priest's chanting became a murmur.  The congregation became a blur.  A still quiet voice reminded me, "this wasn't supposed to be."  And that's when I wanted to drop to my knees and just cry into my hands.  "This wasn't supposed to be."

For a moment, I was given the glimpse into the past...and into the future.  We almost didn't get to experience this - this celebration of our son and the acknowledgment that God has enveloped him in His love.  And I am well aware that these experiences may be limited.

A baptism is always special but this one was especially not taken for granted.

God has given me so much.  And the awareness of God's gifts are sometimes too much to handle.

The reality is, in some small way, I am thankful for Cystic Fibrosis.  CF is a reminder that nothing I have is because I deserve it - but because it's been given:  special moments, my time with my husband/children, my health, my home, my friends, my son's very life.

If we are given 5 years with Bennett or 55 years - every moment is a gift.  If Bennett's life is shorten or if he is given extended time, every moment is a gift.

Despite my disappointment over Bennett's diagnosis and the pain I can sometimes feel over having my life turned upside down by his lifetime of special needs, I cannot be angry with God for the gift he has given me - for ever how long he choses.  This very moment was a gift.

For the sake of the people in attendance and the fact I was determined to have make up on in any of the pictures I took after the service, I didn't go there.

I swallowed the tears back and eventually became distracted by the ceremony activity again.

Bennett's baptism is a story about how God reaches out to us, before we are even aware He exists, and saves us.  And this moment was a story about how God reached down to me, before I was even aware of the gift Bennett would be, and loved me.

He gave me the gift I call my son.

22 June 2010

Bennett's Baptism

Sunday was a very special day.  Not only was it Father's day...but Bennett's baptism as well.

Bennett's baptism was held at King of Glory Anglican Church in Waco.

Such a serious face.

The Godparents and Parents saying our vows on behalf of Bennett.

Bennett was baptized with water from the Sea of Galilee...

...and the River Jordan, which Breck's parents picked up on a recent trip to Israel.  It was very special for us - especially because our family could not be there at the baptism.

Pouring the water.

Blessing the water.

Being baptized.

Many of our friends in Waco were able to attend Bennett's Baptism.  It was so wonderful to have them there.

Passing the Peace.  This sweet guy just loved on Bennett.   Such a delight to experience!

The Godparents (Matt and Emily), Father Pigeon and Us

Matt and Emily are some of our best friends.  They came all the way from L.A. to here for Bennett's big day.

Bennett's God parents (Matt and Emily), Breck, Bennett, Brian and Oliver's Godparents (Laura and Brian).  Oliver didn't want to be in any pictures - or the service.  He was too busy playing.

This cake was made by our good friend Joy (wife of one of Brian's PhD classmates). It was incredibly special to us as it had the meaning of Bennett's name (Blessed Little One) circling around it, along with a beautiful fondant cross placed on top.   It was just as wonderful to eat as it was to look at - and was a sweet ending end to a meaningful ceremony.

21 June 2010

Preparing for Sunday

Happy Father's Day

18 June 2010

Pictures: Our ECI Therapists

Update: Bennett had his blood drawn again today.  The results came back and the CF nurse said his potassium levels (which were previously high) went down, which is good news.  It's still high but not as high.  The doctor will look over the results on Monday and let us know if any new changes will be made to his medication.  He started his medication today, which we gave through his g-tube.  Oh, how we love g-tubes for giving nasty-tasting medication! 

It takes a village to raise a child...especially Bennett.  Here are just a few pictures of the people who help oversee Bennett's health.

Christin (left) is Bennett's ECI coordinator.  She is an excellent resource for us.  She has lots of information and specialists at her fingertips for when we need them.  Mary (right) is Bennett's speech therapist.  She is helping us learn how to get Bennett to take a sippy cup/straw/bottle.  There are other therapists who work with Bennett on a regular basis so we'll get a picture of then in the future.

During a recent visit to our home, we asked if Christen and Mary would take a picture for our scrapbook and to share. We see the ECI therapists on a monthly basis and will continue to see them regularly until Bennett no longer needs the program or turns three years of age. We have very much appreciated what ECI has done for both Bennett and for us!

Update: More Liver Tests/New Medication

We received a phone call from Bennett's CF nurse today.  Bennett's CF doctor wants to give Bennett another liver enzyme test as his other test had an error in it.  So, we'll be going back from bloodwork tomorrow or Monday.

Dr. Dambro, along with Bennett's GI doctor, is concerned that Bennett's liver enzyme levels have not dropped down to their appropriate level yet.  Therefore, Bennett is being placed on the medication Actigall (ursodeoxycholic acid).  We hope this medication will help bring those levels down and help his liver get rid of the waste.

In August, Bennett will see a sonographer for a liver ultrasound.  This will hopefully show that Bennett's liver is "flowing" as it's supposed to.

Sometimes, the mucus (made thick by CF) can clog up the liver ducts.  Cystic Fibrosis affects every person differently.  Sometimes, CF patients have more lung issues or GI issues.  Some experience issues with their liver, others do not.  The nurse told us today that Bennett's CF doctor wants to be aggressive with treating issues regarding his liver since his past medical history makes it so that he's more susceptible to CF-related liver disease.

We have heard from other CF families that this medication is fairly common and does seem to help.  This is good news and we're thankful for a proactive doctor!

17 June 2010

Pictures: CF Clinic

We took a few pictures during our recent visit to Bennett's CF Clinic in Waco.  Bennett has two clinics he goes to...his more complete clinic visit is in Fort Worth.  However, once per month, his doctor visits her patients down in Waco.  Here we are in the room waiting for Dr. Dambro at her Waco clinic visit.

Our big boy sits up on the exam table waiting patiently.

Enjoying a toy while we're waiting.  (We love his chubby cheeks and fat wrists in this picture.)

Peering over the exam table to see Oliver playing on the floor.

Oliver is such a sweetheart at these visits.  He plays in the room and usually waits patiently.  He tends to enjoy watching what happens as we get Bennett weighed and measured.  In this picture, Oliver makes Bennett laugh from across the room.

Mom's Regular Toddler-Stuck-In-An-Exam-Room-For-Twenty-Minutes Arsenal:  Oliver's favorite book, a toy car, Cheez-its (we were out of fishy crackers) and M&Ms (for big time meltdowns or important necessary moments of silent during doctor conversations).

Dr. Oliver puts the patient at ease.

Ready to see the doctor?  I'm ready to see your camera!

Finally Dr. Dambro comes in to exam Bennett.  (Bennett is looks like he is trying to squirm away but he loves Dr. Dambro.)  She says he looks good and our appointment is over!