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Archive for November 2011

No, you are grieving.

Friday, November 25, 2011

"Am I crazy?" I asked my counselor recently.
"No," she replied. "You are grieving."

For two years straight, I daily shared on this blog my tears, fears, joys and frustrations of dealing with our new addition's diagnosis of Cystic Fibrosis.

And then, gradually, as things finally began to improve, my blog posts became less frequent.  I had less to share of our life revolved around Cystic Fibrosis.  And I had more of life to get out and live.

But I would be lying if I said Cystic Fibrosis didn't still consume just as much of my heart.

The reality is that dealing with the trauma of a new life-threatening diagnosis, a very sick baby, the revolving door of doctor offices and many significant life changes in a short period of time offered very little room to fully and deeply grieve. During the last two years, I was merely surviving.

Thankfully, my focus is changing from surviving to thriving.  But that doesn't mean pain isn't still involved.

Now that Bennett's (and Oliver's) needs are much less critical, I am beginning to deal with the parts of the grieving process that over the last two years buried themselves deep deep down inside me, the parts that found other unresolved parts of me to which to tightly intertwine.

I believe this is why I find myself no longer typing my intimate thoughts on a public blog.
It is because, now, I'm sharing my even more intimate thoughts in a private office.
Just me and the counselor.
And lots of processing.

I came in to deal with unresolved feelings.  Feelings about what it means to continue to battle Cystic Fibrosis for the rest of Bennett's life...and my desires/fears/hopes for the future.  But like counseling has always been for me, it is a process of learning about parts of myself I didn't even know existed.  And in that, I am grieving what Cystic Fibrosis has taken, does take and will take in the future.

Therapy is a good process.  A very painful one.  But a good one.  And I'm thankful for the amazing therapist I have who leads me on this journey.

But I find sharing this journey is hard.  Words don't come as readily as I like.  Or at least, when they do, they don't always make sense.

The feelings I am dealing with now are the deeper ones, the ones that are fragmented and confusing.  They are the ones that I didn't even know were there, much less understand.  But they are the ones that will eventually damage me if I don't address them.

I think that once I make sense of them and make peace with them, I will want to write about them.  I love writing.  It is a way to give my thoughts a home.

But for now, I like the safety I feel each week sitting across from a very kind and empathic listener as I nestle myself into the armrest of that white Ikea couch.  For now, my home for these thoughts are in a counselor's office.  And that feels good to me.

The best thing about grief is once it has been dealt with, it makes room for joy.
I think once joy fills up this space again, the words will come once more.

Messy Eater

Monday, November 21, 2011

These pictures of Bennett eating are always so fun to take since his eating is still amazing to me!  Bennett is a ridiculous mess in these pictures and at practically every meal.

Sometimes, my desire for a clean baby and a clean floor make me hesitant to want to give Bennett shredded cheese and chocolate ice cream, two of his favorite foods.  But, I realize that in order to love food, Bennett needs lots of experience with it.  And, Bennett will never be able to learn to eat properly if he doesn't have a chance to practice.

It has been really wonderful watching Bennett enjoy meal times.  We still allow the DVD player when he requests it but he rarely asks for a toy at a meal.  We are no longer focused on a timer but do try to keep him at the table for 20 minutes.  The way we keep him focused on eating is by eating along with him, an effort to show him that eating is a communal act.


Bennett continues to try new foods and enjoy new textures.  His feeding therapist is working with him to chew on both sides of his mouth (he prefers the right side).  But it is obvious that his interest in food is happening on its own now, less driven by us.


The one thing we are still trying to get used to is feeding Bennett fattening foods.  Since his Cystic Fibrosis requires him to need a high-caloric high-fat diet, the types of foods we have to feed Bennett are things like chocolate donuts, chicken nuggets, high fat yogurt, hot dogs (no nitrates), pasta/mac and cheese, chips and ice cream.  


Sometimes I get confused and give him lean turkey, fruit or fat-free foods but I have to remember that while those foods are good and he needs experience eating them, ultimately, what is most important for Bennett is getting in enough calories in the day.  Fortunately, Bennett gets enough protein and vitamins through his formula so what he needs is the fat and calories to keep his body healthy.  It's so backwards and weird to remember as a mother!  




My sister reminded me this weekend that Bennett is on an anti-diet.  So as not to get confused, I'm trying to stay away from all of the foods he is eating and giving him all of the foods I'm trying not to eat!  But keeping chocolate donuts and Haagen Dazs ice cream in the freezer is hard!!  Nonetheless, whatever we are doing seems to be working (even if half it falls on the floor)!

Bennett's Cystic Fibrosis Appointment

Wednesday, November 16, 2011

We just had our quarterly CF appointment. We traveled up to Dallas Children's Medical Center to see our team.  Every three months we go to check Bennett's overall health, especially his lungs and growth.

Bennett loves firetrucks.  So, he was thrilled when I purchased him some fireman boots from Target and found in the closet a dress up fireman hat that someone had given the boys a while ago.  Ever since he found this outfit, he has insisted on wearing his books and hat everywhere, including his CF appointment.


The only way Bennett likes to wear his fireman hat is, of course, backwards.  He also has a little fireman doll he loves who's name is "Guy Hat" (which translated means "The guy with a hat").


Bennett and I both enjoy special time together at Children's.


When we first get to our appointment, the staff asks Bennett to wear a temporary medical bracelet.  Bennett isn't a fan of it.  So, I asked if "Guy Hat" could have one too.


Of course, lots of candy seems to positively affect Bennett's willingness to do things he doesn't normally like to do.  (Thank goodness Bennett is now into food, especially candy!  It's amazing how wonderful it is to motivate him using candy!)


Bennett's appointment went well.  His lungs were very clear and sounded great.  He has still had no serious lung infections, which is wonderful.  The staff gave him a throat culture (which includes putting a very long q-tip down the back of his throat) to find out if he has any nasty infections lurking in his lungs that we don't know about.  We will know the results later this week.


The only concern that came up during our meeting with the doctor is Bennett's weight.  Bennett has not gained weight since August.  He was at the 50th percentile and is now around the 25th percentile.  The doctor said we have room to be patient since we are transitioning Bennett off of the g-tube.  But, we will be more concerned if his weight doesn't increase here soon.  We shall see!


Bennett received this neat little bag-that-turns-into-a-toy thing for his birthday.  As soon as I saw him open it, I knew it would be a great gift to save for special days in the hospital like this!  Novel toys are wonderful for CF appointments because the appointments usually take 3-4 hours.


Thankfully, our CF appointment went well.  We love our team at Children's and are so thankful for appointments that leave us with a good bill of health!  (By the way, one of our fun surprises of the day was learning my CF Momma Blog Buddy Lydia and her son Azer (with CF) and daughter Reema (no CF) were in the exam room right next to us during our appointment, which was wild!  It was funny because the only way we knew we were so close was via my status update on Facebook.  HIPPA prevented the medical staff (who know we are friends) from telling us we were so close to each other.  So, I am glad for Facebook and glad we got to meet each other's children for the first time!)

Update on Bennett's Feedings

Monday, November 14, 2011

Bennett is doing amazing these days!!  He is eating well, staying healthy and beginning to talk more and more!  We could not be any happier at his progress.

In fact, we have decided to stop most, if not all, of his therapies because of it.  We ended our Speech Therapy a few months ago, stopped our Early Childhood Intervention therapies a few weeks ago and will finish up our Occupational Therapy in December.  Bennett is beginning to improve with less and less support, demonstrating to us he will do just fine without bi-weekly therapy appointments.  We are ok with picking up with the therapies again in the future, if necessary but we're also quite anxious for a break.

Since we cut down on Bennett's tube feedings a few months ago, his appetite has increased.  This has been HUGE!  Believe it or not, these days, Bennett will eat just about anything - and while he does not eat alot of anything, he can now be motivated to eat more and more using toys or favorite foods.

Bennett loves M&M's, Reese's Buttercups, Chips, French Fries, Greek Yogurt, Hot Dogs, Turkey, Cheese, Peanut Butter and Jelly Sandwiches and Lifesavers Gummis.  But that's not all.  I could keep going!  He has an extensive list of foods he likes...and thankfully most of them are very fattening (exactly what he needs)!

Things are going so well with Bennett's eating that we are feeling more and more confident that eventually Bennett will not need the g-tube.  We won't take the g-tube out for many more years in case that changes sometime down the road.  But we are really close to getting him weaned.

Eating and gaining weight will be a lifelong battle for Bennett due to malabsorption issues with Cystic Fibrosis.  I am very aware we're in for the long haul.  However, every sign of improvement is worth celebrating!!

There is nothing more wonderful than listening to Bennett yell out "eat!" when he wakes up in the morning, steal a chip from the lunch table or want a bite of your sandwich at dinner.  I am so thankful for the journey that we have traveled before now.  It has been worth it!

Comparing Pumpkin Pictures

Saturday, November 12, 2011

What a difference a year makes!  Here are Bennett's pumpkin pictures over the last two years:

2010: 1 Year Old


2011: 2 Years Old


2011: Brothers

Comparing Pumpkin Patch Pictures 2012

Wednesday, November 9, 2011

I know October is over but I still have some remaining pumpkin pictures I thought would be fun to share.  I love comparing pictures as it shows how our family has changed since we moved to Waco.


Pumpkin Patch - 2009 (Oliver, almost 2; Bennett, almost born)


Pumpkin Patch - 2010 (Oliver, almost 3; Bennett, 1)


 Pumpkin Patch - 2011 (Oliver, almost 4; Bennett, 2)

Teeth Decay and G-tubes

Tuesday, November 8, 2011

A few weeks ago, Bennett's OT/feeding therapist mentioned to me Bennett is sensitive on his left side of his mouth.   So, needless to say, I began getting concerned that maybe Bennett could have a cavity, which would surely affect his eating issues if he did.  In addition, I have noticed that there are times when Bennett's teeth have seemed a bit yellow, despite that we brush them regularly.

A few weeks ago, I set up a dentist appointment for Bennett to check his teeth.  I shared with Dentist about my concerned over the fact that, until just recently, Bennett did vomit alot (sometimes three times per week) due to complications with Cystic Fibrosis/having a g-tube and recurring issues with C.Diff.

Thankfully, Bennett's visit to the dentist went really well.  (I have no pictures because I spent all my time reassuring him all the strange people and tools were ok.)  But it turns out the dentist had several helpful things to say.

First, she said Bennett has no cavities.  Second, the Dentist gave me some of the best news a mom can hear: "Bennett has beautiful teeth.  Whatever you are doing, keep doing!  You are doing a wonderful job...Kids with G-tubes typically have alot of teeth decay due to reflux and vomiting.  So, the fact that Bennett's teeth look so great is because of you!"

Ah, how wonderful to hear - both because I wanted him to have healthy teeth and because his healthy teeth are especially important because he is so susceptible to tooth decay!

Unfortunately, vomiting can easily wear away the enamel on one's teeth.  So, despite our brushing, if Bennett continues to struggle with vomiting issues (which typically take place during the middle of the night), he will begin to see issues with his teeth.  This is just one more reason why we have to continue to help Bennett manage his eating issues.

As far as the yellowing of Bennett's teeth go, the Dentist said there isn't much we can do.  It may be from vomiting or from the medications he has to take daily (one of his meds, AquaDEKS is particularly bright orange and easily stains).  The hope is this will eventually go away as we will continue to brush regularly and keep his visits to the dentist regularly (they can put on a protective varnish that may help).

Overall, this is just one more small complication we have seen from having Cystic Fibrosis and a G-tube.  Thankfully, however, Bennett's eating/vomiting issues are subsiding.  He hasn't had C.Diff in a long time and he is eating more and more regularly by the day.

He handles brushing his teeth well, which is really great since he struggles with oral aversion.  So, we are very hopeful.  And most wonderful of all, if these teeth get screwed up, he has another set of pearly whites coming in in a few years!

G-tubes in the News

Sunday, November 6, 2011

I love this recent TV spot about two little brothers with Mic-Key G-tubes like Bennett has. It makes me so happy to know these boys are doing just fine with their tubes.

 Bennett continues to do really well eating orally but we feel confident he will probably have his gastic feeding tube until adulthood. So, if these little guys can do it, I know Bennett will continue to do just fine with his too.

Check it out: http://www.9news.com/news/local/article/228415/346/Feeding-tube-brothers-hoping-to-change-stigma

 

Bennett and Oliver's Birthday Party

Friday, November 4, 2011


Last week, we held the boys' joint birthday party. Bennett turned 2 in September and Oliver turned 4 this week.  The boys had a wonderfully sweet birthday that was filled with their favorite toys: cars!!


We had some yummy snacks and candy on hand.






Cheese squares.


Blue kool-aid.


Spare Tires: Chocolate Donuts, Oliver's favorite



Dipsticks: Chocolate Pretzels with Sprinkles



Delicious cookies by our friend Margaret


We couldn't find a car cookie cutter until the last minute so we went with O and B cookies.  Oliver went crazy over cookies with his and Bennett's first name beginning letters.



Trophies for the fastest cars at the party.







The birthday cake, made by our friend Joy!


The boys *loved* having a cake with cars on it!



For the birthday game, we played "Red Light, Green Light."



"Run!  Run!"



Parker runs for his trophy, as fast as his little one year old legs will go.



Each year, we celebrate the boys birthday with a Montessori birthday celebration.  This celebration includes each child walking around a candle (the sun) while holding a plastic globe (the earth).  During their turn, each child walks around the sun as many times as years old they are.  This is done while all of the birthday guests sing a song and during which Momma or Daddy tell the story of their birth and growth.  The kids love it.  We hope it will better teach them the concept of a birthday and will continue to be a family tradition.



Bennett blows out his candles.



Oliver blows out his candles.



The boys favorite part of the cake?  The edible fondant cars!



Opening presents with friends.



Sweet friends.


Bennett checks out his new gift.

Party favors for the party guests.


Snickers mix for the adults: Candy Corns, M&Ms and Peanuts



Happy Birthday Big Boys!!