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Archive for July 2016

Happy 3rd Birthday, Avonlea!

Monday, July 25, 2016

She's the cherry on top.

Her bear hugs are our favorite.  Her belly laughs are contagious.  She loves baby dolls, princesses and dressing up.  She hums the Star Wars theme song by memory and regularly plays "conflict resolution" with Bennett's Batman and Superman action figures.  She feels like everyone is her friend.  She has her brothers wrapped around her finger. And if she thinks you're cooking, she wants to be right next to you.  

It seems only yesterday we were announcing we were pregnant with this sweet girl.  Today this little bundle of joy is celebrating her third birthday!  

I thought long and hard about what kind of birthday party theme might best envelope who Avonlea is and what she's in to at this age.  But it didn't take long for me to recognize that, when you're a little girl who wants to regularly be referred to as a kitty cat, a kitty cat themed 3rd birthday is the best.


In order to keep birthday parties manageable as the children grow, Brian and I decided a few years ago create a family rule to limit the number of kids we invited to the children's party using their birthday age as a guide.  So, this year, Avonlea invited 2 little friends to her birthday party.


Avonlea was tickled pink over her kitty cat cake (which I found on Pinterest here and asked SimplyDelicious to make).  Three is such a fun age because *everything* is the most wonderful.  My favorite line that Avonlea regularly but randomly quotes is from Tangled: "Best. Day. EVER!!"


The little girls enjoyed fresh milk with their cake because every kitty loves milk (milk glasses were found at Target in the Dollar Spot).


Kitties also love mice.  These little strawberry mice, found here, were made with strawberry bodies, almond sliced ears, mini-chocolate chips and pull-apart Twizzler tails.  It calls for honey to keep the little eyes, nose and tails attached but I found honey to be a challenging adhesive.  Nonetheless, they were fun to make. 



Oliver wanted chocolate cake but Bennett wanted vanilla so I decided to make vanilla cupcakes (from a box) and used cut-in-half marshmallows as a "kitty cat paw print." For decorations, I made yarn-balls and hung some from the light fixture.  For party favors, each little girl went home with a stuffed kitty.  (Originally, I had wanted to have live kittens for the girls to play with at the party.  But, considering Brian is super allergic to cats, I decided to nix that idea.  Anaphylactic shock would not be a good way to end a birthday party.)


The girls mainly wanted to play with each other the whole time but one little activity I set up for them included "dressing up as kitty cats."  I cut several white marabou boas into 8-inch long strips to be used as kitty tails.  Felt, headbands and a hot glue gun were all that was needed for creating kitty ears. And then, to top it off, I also bought several pairs of white athletic socks at the dollar store and glued pink felt on them to make "kitty paws".


We've been practicing all day, regularly asking Avonlea, "how old are you!?"  She is still working on getting that new little finger to rise up with the other two.  


You couldn't be any more purrrrfect for our family, sweet kitty cat!  Happy 3rd birthday, Avonlea!



Sigmoidoscopy with Dilation - Numero Tres

Saturday, July 23, 2016

I wonder if this is the way people in the military feel when they deploy, return home, and deploy again.

In many ways, life with a chronic disease is nothing like military life.  Deployed military personnel have far greater challenges than we do on a regular basis, which is why these ongoing hospitalizations give me even more respect for what they have to deal with when it comes to living two separate lives.

There is a rhythm to life, both life in the hospital and life outside of it.  But those rhythms are very different. This every-three-weeks dip into "hospital life" is a shock to the system.  But we seem to adjust just in time for us to return back to "civilian life."

Bennett was admitted Thursday morning for his third sigmoidoscopy with dilation.  Everything went well.  During the procedure, the GI doc stretched Bennett's stricture from 12mm to 13.5mm (up from 6mm).  We have yet to see a huge decrease in the frequency of times Bennett has to go to the potty but that's also not a huge surprise since the hole is still pretty small.  We are all hoping we will see more success with following procedures.

The GI doc mentioned that, although she increased the size of the stricture to 13.5mm today, she was unable to place a 9-10mm catheter through the stricture.  She said that these things are not an exact science and sometimes it takes stretching a stricture pretty far before it stays opened to the size we want.  So, we aren't exactly sure how big the stricture is except that it's smaller than what we want it to be.

I am going to start trying to track Bennett's bowel movements now that we are back home.  It's hard when he's 6 year's old and it's summer.  He can't remember how many times he's pooped in a day and I can't focus enough, through the chaos of summertime, to remember myself.

Nonetheless, Bennett's next procedure will take place in 3 weeks.  The GI doc hopes she can stretch the stricture to 15mm.  After that procedure, we are looking at another procedure to stretch it to a size 18mm.  The pediatric surgeon will likely be involved during that effort.

It's hard to believe we have more procedures to go.  On one hand, these procedures couldn't go any better.  Our doctor is fabulous.  Bennett's body is responding.  Bennett is not in pain. We aren't having to be admitted more than one night.

On the other hand, these procedures are wearying.  Hospitalizations are inconvenient and interrupt our family life.  Bennett is tired of going through all of this stuff.  He wants to stop having to be poked and prodded. Giving your child miralax and enemas over and over again to prepare for surgery really sucks.  Bennett is tired of having to go without food to prepare for anesthesia.

Bennett and I (and Brian and the kids back home) are all focused on making the best of these situations.  We are tremendously blessed.  But sometimes...

I just stand in the hallway of this hospital, see myself in third person - beige walls surrounding me, cold white tile under my feet, the air filled with sounds of beeping machines and quiet chatter of hospital staff - and I wonder:

"how in the world did I get here??"

How did I get to the point where I know hospitals so well?
How did I get to the point where I no longer get nervous when Bennett is in surgery?
How did I get to the point where "going to the OR" feels as straightforward as showing up for piano lessons?

"Ya'll are both so relaxed," the Pre-Op nurse said to me off-handedly yesterday.  I looked at Bennett, who was peacefully grinning ear to ear from all of the "loopy" medicine that he received in preparation for his procedure.  I wasn't sure why she had used the word "ya'll".  I asked curiously, "we are??"  She replied, "oh yeah, you're so casual.  You say, 'yeah, we can do this or, we can do that' like it's no big deal."

Yes, she was right.  I was feeling very laid-back.  I am confident in Bennett's OR team and confident in his ability to tolerate the procedure.  But my confidence ultimately comes from the fact we've been here before...many times.  I might even feel a bit resigned.  Not much point in getting stressed.

I'm very ready for these procedures to be done.  I'm ready to stop the deployments.  I want to stay in civilian life.

But, while we're here, deployed to a place we do not call home, it's so great to have friends visit us in the trenches?

Thank you to our friends Lani and Roy who came Thursday night to play games with us and who brought goodies with them.  We were really glad Bennett felt so good.


We were also excited to be able to see our friend Megan who lives in Dallas and brought her new baby, Maren, to visit us right before we left to go back home.

As we were leaving the hospital, my new friend Katie, a mom of a child with a chronic disease, came and found me at the hospital to drop off some extra supplies her son doesn't need anymore.  Thank you Katie for sharing valuable g-tube supplies ya'll don't need anymore!

And thank you to all of our friends back home and far away who sent messages of love while Bennett was in surgery and in recovery.

While our time away was made sweeter by friends, my greatest motivation to make it home from this most recent hospitalization was to take Avonlea and the boys to see Beauty and the Beast on stage at the Waco Civic Theatre.  Thankfully, we made it in time.


It made my heart so happy to see Avonlea's face when she saw Belle on stage for the first time.  I loved hearing Bennett cackle when Gaston threw LeFou through the air.  I loved holding Oliver's hand during the songs.

Switching between hospital-life and home-life over and over again is challenging.  But, doing so only makes special little moments like these that much more meaningful.

Dyslexia

Thursday, July 14, 2016


The blog has been quiet because my house hasn't been.  It's summer, so that means popsicles, playdates and visits to the pool for our family.  We gear up for another procedure for Bennett next week.  But for now, I'm happy to just focus on enjoying our fairly quiet summer.

Outside of summer fun and our regular visits to the hospital, one other thing that has kept me busy this summer has been working with Oliver, who I mentioned in this blog post has having been diagnosed with dyslexia.

I have given much thought about just how much I want to share about dyslexia on this blog, considering it's mainly about Bennett and his journey with CF.  But then I realized, my sharing about dyslexia is directly connected to CF.

Becoming a parent advocate for a child with a chronic condition like CF is not much different than becoming a parent advocate for a child with an educational disability.  Both push me to share things I've learned and resources that I have found to be immensely helpful, in hopes those around me, who are also struggling, can benefit.

So, for those who don't know much about dyslexia (or want to better understand what Oliver is dealing with), here's a quick Q and A with resources scattered throughout:

What is dyslexia?
Dyslexia is as a learning difference (considered a disability in the educational system) characterized by problems in processing written words into meaningful information.

Dyslexia is often over-simplified as a language deficit.  However, neuroscience shows us the brain is cohesive.  People with dyslexia actually think differently.

Neurodiversity, the diversity in how each of our brains work, offers a series of cognitive trade-offs.

People with dyslexia are often recognized for their difficulty with written language but may also struggle with executive function skills, working memory issues, attention issues, slower processing and issues with rote memory.

The cognitive trade-offs for people with dyslexia are that they are also known to exhibit huge strengths such as big-picture thinking, interconnected reasoning, problem-solving skills, ability to stay focused on a goal, unusual insight into complex systems and great creativity.

Many talented people struggle with dyslexia but benefit from dyslexia too: Steven Spielburg, Jamie Oliver and Richard Branson, creator of Virgin Airlines.

There are many others but my point in sharing well-known people with dyslexia is that dyslexia shouldn't be seen as a disability, something to "overcome," but rather something to embrace.  As long as we limit people with dyslexia to having a disability, we fail to see the amazing thinking process they actually embody.



So does dyslexia mean Oliver can't read?
Dyslexia means Oliver struggles with written language but it does not mean that he can't read.  In fact, Oliver reads above grade level!

Dyslexia looks different in every person.  For Oliver, dyslexia manifests itself in multi-step things that feel incredibly complicated, things like tying his shoes, figuring out a math problem, answering questions from a passage or organizing a project.  For Oliver, handwriting is particularly laborious.

Most people would never know Oliver has dyslexia.  He uses his advanced social skills to hide his struggles.  But school is very difficult for him.  He works extremely hard to do what is asked of him but becomes very overwhelmed having to do this day after day.  Without support, Oliver can easily feel he is not capable of things he is more than capable doing.  This is why addressing dyslexia is really important.  

What causes dyslexia?
Like CF, people are born with dyslexia.  Dyslexia is highly inheritable.  But, unlike CF, no one gene has ever been identified for causing dyslexia.

People with dyslexia have shown to use a different part of their brain to read than do those who do not have dyslexia.

It is believed that as many as one in five people have dyslexia. And most have a parent, grandparent, sibling, aunt or uncle with dyslexia.

With regard to our family, Brian and I don't have dyslexia but we know a few extended family members that do.

We do not yet know if Bennett or Avonlea have dyslexia.

How do you treat dyslexia?
Dyslexia isn't a disease.  So, there is no cure.  And I don't ever expect there will be one (nor do I prefer one).

Dyslexia is simply a different way of processing information.  The best treatment for dyslexia will be when the educational system catches up to science and begins supporting humans' diverse learning processes.

For people with dyslexia, written language can be very difficult.  Those with dyslexia often need to be taught to read in a very specific way.  Right now, Oliver gets on-going intensive tutoring outside the regular classroom to work on reading, spelling, writing and written organization skills.

Oliver will need this intensive tutoring for about 2 years to master his reading skills. But people with dyslexia may always struggle with reading, spelling and writing in some capacity for their entire lives.

People with dyslexia may need accommodations at school to help them reach their potential.  This isn't because something is wrong with them, but it is because so much of the educational system measures learning very narrowly, often with a focus on reading and writing.

As more and more classrooms become multi-sensory and more and more technology is implemented, I hope more people without dyslexia will see just how amazing people with dyslexia are.  As long as we look at people with dyslexia for what they *can't* do, we cannot see what they can.  If you know someone with dyslexia, you will know exactly what I mean. ;)

I love this chart - it shows how dyslexia affects people's reading abilities.  Notice how people's IQ scores go up but their reading scores begin to struggle.  People with dyslexia are typically able to stay up with their peers for a while.  But without extra support, their scores begin to suffer:


How early can you test for dyslexia?
Children can be tested for dyslexia as early as the age of 5.  The earlier a child is treated, the greater their success in school.

It is NOT true a child must wait until 2nd or 3rd grade to be tested.  If a parent or teacher has been told he/she must wait until the child is older/fails in school, it is out of a desire to protect limited school resources, not out of protection of the child.

The first 2-3 years of primary school is spent learning to read.  All of the rest of the school grades are spent reading to learn.  Time is not on your side.  Testing should be done as early as possible.

By law, schools must test students enrolled in the public school system whose parents send a signed letter to the school in writing requesting testing be done.  Many states have a law that testing must begin within a certain number of days from receiving that letter.  Make sure to keep a copy in your own records should there be a delay.

Testing in the public school, while free, may work well or may be too generic to identify the child's specific needs.  If testing within the public school system is too slow or too generic, I suggest moving forward with private testing.

Once test results identify a child has a learning difference that is considered a disability, like dyslexia is, the child will be required by law to receive support services in the classroom through an IEP or 504 plan.  Texas considers students with dyslexia to be covered under a 504 plan.

How do you test for dyslexia?
Educational psychologists have a variety of tests they use to test for dyslexia.  I recommend looking for someone who can give a full "psycho-educational assessment."

The public school's special education system can test but I highly recommend private testing as it can provide more specific testing than the public school system can offer students.

Brian and I felt full psycho-educational testing was important for understanding Oliver's issues in school.  We wanted to have all parts of his cognitive and psychological processing evaluated to give a better picture of what might be going on.

Oliver was tested at the University of North Texas-Denton's child psychological department and the UNT-Denton Speech and Hearing Clinic.  The testing took place over 3 half days.  We were very happy with the process and all that we learned about how he learns and how to help him.

There are many organizations, people and universities around the US who offer psycho-educational assessments starting at age 5 or 6.  Some are very expensive.  Others are more reasonable.

Universities often offer more cost-effective testing as those who are doing the testing are often students themselves learning under professors.  I suggest asking around.

Here is a great website that tells more about testing for dyslexia, specifically: http://www.allaboutlearningpress.com/testing-for-dyslexia

My child has a dyslexia diagnosis. Where should I go now?
Here is a great resource for how to approach your child's school about your concerns:
http://dyslexia.yale.edu/Preparingfor1stSchoolMeeting.html.

I recommend using the Orton Gillingham approach to addressing reading issues with dyslexia.  I also recommend Barton Reading and Spelling.

Once you know your child has dyslexia, I highly recommend learning as much as possible about it. Here are some good books to read: Overcoming Dyslexia, the Dyslexic Advantage, the Dyslexia Empowerment Plan

Here are several documentaries about dyslexia I really love: HBO's The Big Picture, Rethinking Dyslexia (see the trailer here) and Embracing Dyslexia.


I'm a teacher who has students with dyslexia in my classroom.  I am not trained to teach children with dyslexia.  Any recommended resources or advice for me?

Here are two resources I recommend:
http://dyslexia.yale.edu/teachers.html and http://www.internet4classrooms.com/exceptional_children/dyslexia_teacher_resources.htm.

As a mother of a child with dyslexia, I have three pieces of advice for teachers of students with dyslexia (which is pretty much every teacher as dyslexia is the most common educational special need):

1.) Recognize that dyslexia is not just a reading/writing/spelling issue.  People with dyslexia think differently.  This will impact everything they do in your classroom.

2.) Embrace the whole child.  The child is not the child without this learning difference.  Dyslexia is something you will have the opportunity to address in a variety of areas and that you will benefit from in your classroom.  Children with dyslexia will surprise you with their thoughtful insights and their creativity.  They may also surprise you with their tendency to struggle in areas you wouldn't expect.  Embrace all of them.

2.) Believe in this child more than anyone ever has in their entire life. You have the power to make a HUGE life-changing difference.  Ever considered what left-handed people feel like as they live in a right-handed world?  Imagine that experience 10 times worse.  People with dyslexia have to live life in a world made for non-dyslexics.  Written language is the key to success to so much in life, especially when it comes to school.  So, to struggle with written language means school work is arduous, success is limited and expectations are overwhelming.  The fact that children with dyslexia face this challenge every day and do so with great strength is something to be admired.  Children with dyslexia become accustomed to failing, to not meeting the expectations of the teachers/adults around them and begin to hate themselves for what they can't do.  Having a teacher who believes in them - who sees beyond what they can't do and instead sees what they can do - can make a huge difference in the life that child.

Fourth of July 2016

Monday, July 4, 2016

July 4th is my favorite holiday of the year.  I started taking pictures of the boys on July 4th in 2010.  It's a lot of fun to see how much the boys (and their little sister who came along 3 years later) are growing!

July 4, 2016 (Oliver, 8; Avonlea, 2; Bennett, 6)


July 4, 2015 (Oliver, 7; Avonlea, 1; Bennett, 5)


July 4, 2014 (Bennett, 4; Oliver, 6; Avonlea, 11 months) 


July 4, 2013 (Bennett, 3; Oliver, 5)


July 4, 2012 (Bennett, 2; Oliver, 4)


July 4, 2010 (Bennett, 10 months; Oliver 2)


Sigmoidoscopy with Dilation - Numero Dos

Friday, July 1, 2016


Thursday morning, Bennett had his second of multiple procedures to address an intestinal stricture.

Ever played Jenga?  That's how these procedures feel like to me.  Bennett goes under anesthesia, they dilate his stricture, he wakes up and we patiently wait 24 hours to see if an infection emerges to determine whether or not surgery will be required.

Each time we go in to the procedure, each time a Jenga piece is pulled, our stomach drops as we wait to see what will happen.  Because colon perforation in these situations are not uncommon, there is a cautiousness involved. This is why Bennett is being kept overnight at the hospital for observation each time.

Each time things goes well, each time the Jenga game doesn't come crumbling down, there is cause for celebration and a hope that next time will go just as smoothly.



Things went perfectly this time, just as before!  The GI doctor (not pictured above) was able to dilate the stricture from 10mm to 12mm.  The stricture is now double the size it was when we first found it 6 weeks ago during a colonoscopy.

In theory, Bennett's intestines should work more efficiently now, so we hope this will really help Bennett feel more comfortable and not have such an urgency to go to the bathroom.  We should know this week if it worked.

The GI doc hopes we can eventually move the stricture from 10mm to 18mm or more.  She suggests that we try this another 2 or 3 more times, maybe even consider placing a stint to help keep it open.

Then, she'd like to wait 4-6 weeks  to see how things go.  If his symptoms don't improve or get worse, we'll go back in.  If all goes well, we will reconsider going in again in 4-6 months.  The goal is to improve Bennett's quality of life without having to go through invasive surgery.

The GI doctor thinks that after a few more procedures, we might be able to stop having to stay in the hospital overnight.

Our next procedure is planned for Thursday, July 21.


One thing I learned this time is that Bennett does not seem to be having pain during and after these procedures.  The anesthesiologist, whose job is to keep him comfortable during surgery, told me he was surprised that Bennett's heart rate did not go up during the procedure, indicating that Bennett does not feel the stretching of the stricture.  We think it's because the stricture is likely high enough in the bowel where there are no pain sensors.

Not needing a lot of pain meds makes recovery significantly easier. Pain medications can make kids feel nauseous or irritable when they wake up.  So, his not needing much pain med means that waking up from surgery is relatively easy and feeling back to normal happens relatively quickly.

The other thing I learned about his procedures is the anesthesiologists are regularly choosing not to put breathing tubes down his throat.  Although they use something that keeps his airway open, his not having a tube down his throat helps to keep from the spread of an infection to his lungs and helps him to not wake up with a sore throat.



Our hospitalization went really well again, even better than last time since I was able to ask for small some accommodations (mainly no 2AM trash take-out).

Medical experiences with a chronically ill child is like one massive a brain teaser.  It takes a ton of focus, some knowledge and a bit of skill to navigate. Every time I go through a hospitalization, surgery or clinic visit, I try to learn everything I can to use it for the next experience.

Out of curiosity, during meal delivery time, I asked the food worker at the hospital: "Why are you delivering Bennett's food on paper tray with a styrofoam plate when last time we were hospitalized for the same reason our food was delivered on a hard plastic tray with a ceramic plate?"

Bless her heart, the poor food worker started to stutter having no idea how to answer me.  A nurse piped up behind her and explained that she thought the reason we didn't get a hard plastic tray this time was probably because we are on isolation.  Paper trays can be thrown away minimizing germs.  Of course, we were on isolation last time so who knows.  But I am so glad my natural curiosity allowed me to stumble upon the realization that there was another option.

Now having learned paper trays are an option, I will request them from the beginning and hopefully minimize Bennett's exposure to hospital germs.  It's amazing to me how important it is to stay curious as a CF mom.

"Why do you put the gowns on inside the room instead of outside the room?"
"Why are we doing blood work again?"
"Who is the one who makes the decision in this situation?"
"Why do use this type of intervention instead of that intervention?"

I'm often asking, not because I yet have an opinion but because I'd like to be better informed before I do. :)

"Is there anything else I can do for ya'll," the Medical Resident asked me while making evening rounds Thursday night.
"Yes," I said, "can you tell me how we can discharged earlier than later tomorrow morning?"
The Medical Resident responded, "oh, I'd be happy to put you first on the list to be seen by the Attending Doctor tomorrow morning so you can get out earlier if you'd like."
"Bingo," I thought. "That's what I will request from now on."

This morning, instead of leaving the hospital around noon like we had to do last time, we were out the door by 9:30am!



A funny situation that happened during this hospitalization was when is our male nurse randomly asked me, "Are you the mom who likes to do her own breathing treatments?"

I answered with hesitation and a slight grin, "yes, I do like to do Bennett's breathing treatments. But, why'd you ask if I was 'the mom'?" 

The nurse smiled and said the respiratory therapist had asked him that specific question.  

When the respiratory therapist came to our room a bit later, I told him about the exchange I had had with the nurse.  We laughed together.  He said, "when I saw your son, I remembered you.  He pointed to the other side of the hospital floor,  "you used to be over there."  

I learned pretty early on that while hospital respiratory therapists will gladly take off the burden of the parent having to do treatments while in the hospital, Bennett responds best to my doing his treatments, mainly because my doing them seems more like our home routine.

Nonetheless, this respiratory therapist had spent no more than a total of 5 minutes with us last time.  But he apparently remembered me well.  A confession of a CF mom: being considered "memorable" for carrying for one's son's lung hygiene is a moment of which to be proud. :)


While admitted, two sweet women from Child Life came knocking on the door with toys in their hands.  


The floor had reopened and all the children had been transferred back to the main hospital on the very day of Bennett's admission.  Because of this, the hospital Child Life staff was giving toys to all the children on the floor, including the kids who had just been admitted that day.  

We have *so* many toys at home that I almost suggested that we not accept the toys he was being offered.  But decided to take off my normal-mama hat and put on my hospital-mama hat, reasoning that anything that makes Bennett's hospital experience a positive one can't be a bad thing.  

My normal-mama self was willing to give in to my hospital-mama self on the condition that I commit to returning next time with new toys that we can donate to the hospital for them to give to other sick boys and girls to enjoy.  

I cannot even communicate just how meaningful little treats like this can be for families suck in the hospital.  I'm not sure if it's the surprise, the kindness or the newness.  But treats and crafts for kids during hospitalizations are really delightful.  

I look forward to contributing to this delightfulness in other families as a new part of our hospital routine.


And that was that!  Everything went off without a hitch!  Bennett was a rockstar this time around.  He said not even one tear!  

I am not going to lie.  I hate hate hate having to do all this stuff.  This is like our 16th overnight hospital stay this year alone.  I hate the interruption CF causes to our lives.  

I have so many other things like I'd like to spent my time and money on, rather than dealing with hospitals, doctor appointments and treatments.  

But I also recognize that God has provided us so many blessings to fill in the gaps between the frustrating moments.  

As we end this procedure and gear up in a few weeks for another, I am focused on taking deep breaths, recognizing the goodness around us and remembering that this little boy is well worth it all: