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Archive for September 2011

Mama's Thoughts: Bennett Turns Two!!

Friday, September 30, 2011

It's hard to believe our baby is two years old today!  What a wild two year ride it has been!  (No need to rehash the last two years in this blog post when I have 789 blog posts all about it! Ha!)  

I was asked by one of his therapists yesterday if today would be a sad day for me, knowing my little boy is no longer a baby.  But my response surprised me.  No, I replied.  Bennett turning two is a very happy thing.  We didn't know if we would get here.  We've worked incredibly hard for him to be here.  Reaching his second birthday so happy and healthy is quite an accomplishment.  Today is not filled with sadness, it's filled such much happiness.  In fact, when I think of Bennett as a baby, I can't help but think of him as a very very sick child.  So, Bennett's birthday symbolizes much triumph and hard work.  It celebrates a little boy who is thriving.

I have been thinking alot about Bennett these last few days, particularly how much he has changed.

Three separate very-Bennett-like situations happened last night that I wanted to make sure I document about his last day of being 1 year old...

First, I couldn't help but laugh last night when Bennett started throwing a full on tantrum because I told him we couldn't do his Chest Therapy Vest Treatment until later this evening.  Bennett, fully aware the only time he gets to watch TV is during his treatment, came to me and asked if he could do his Vest treatment.  He started pulling out the tubes so I knew what he wanted.  I wasn't quite ready to give his treatments my attention since I was cooking so I told him we could do it later.  He immediately hit the floor and began to wail.  Oh, that face!  Distraught over not being able to do his treatment!  How can a mother resist when a child wants to do his treatments??  (For the record, I gave in.)  That's our Bennett: wanting to comply even when it means getting treatments.

Second, I was playing a game with the boys last night: The Clothes Monster.  Sometimes, before bath time, I play like I am the Clothes Monster looking to "eat" the clothes off the backs of unsuspecting little boys.  I had fully stripped Oliver but was in the process of trying to take Bennett's clothes off before I noticed Bennett holding a g-tube in his hands.  I thought to myself "weird, how did he find one of those?" before I noticed a cavity in his stomach missing its g-tube.  I about freaked out but calmly called Brian over to help.  Bennett, knowing his g-tube had come out, didn't seem the least bit concerned.  He just lied down and let Brian place it right back in with not even a squirm.  That's our Bennett: strong and not the least bit phased.

Third, last night as Brian got Bennett's nightly g-tube feedings ready, I was in Oliver's room on his bed reading books.  Bennett was waiting for Brian to read books to him in his room (the boys have separate rooms) so he found some interesting toys to play with near Oliver's bed in the meantime.  I was trying to read a book to Oliver about tornadoes when, in the corner of my eye, I catch Bennett running around in circles with both his little pointer fingers in the air moving up and down as he danced to the music of the toy.  Oliver and I couldn't help but stop reading and just laugh.  That's our Bennett: happy to make others laugh.

Bennett, your resilient determination, easy-going personality and joyful spirit brings happiness to nearly everyone you meet.  I am so proud to be your mother and extremely thankful for all of the gifts God has given to me through you.

You are truly, Bennett, a blessed little one.   Happy 2nd Birthday little guy!

 

Pictures: The Many Faces of Bennett Over 2 Years

Birth - September 30, 2010


 
1 Month Old - November 2010


 
2 Month Old - December 2010


3 Months Old - January 2010


4 Month Old  - February 2010


 5 Months Old - March 2010


5 Months - April 2010


6 Months - May 2010


8 Months - June 2010


9 Months Old - July 2010


10 Months Old - August 2010


11 Months Old - September 2010

12 Months Old - October 2010


18 Months - April 2010



2 Years - September 2011

A gift for Bennett

Thursday, September 29, 2011

This is what I received tonight as a gift and message from Khimberly at Snaptastic Shots: http://www.youtube.com/watch?v=qdxpcXJ-4Nk

Last week, Khimberly captured some beautiful pictures of Bennett for his 2nd birthday. She was able to get some fabulous pictures of the boys together...

...and apparently me as well. (Although, for the record, I had no idea, until I saw this slideshow, that I was even being photographed so I neither dressed for the occasion nor realized, at the time, I was being shot!)

But I love that Khimberly caught me with the boys anyway. Isn't that the sign of a fabulous photographer, one who catches the emotion of the moment even when the subject isn't looking? :)

Thank you again, Khim, for taking such beautiful pictures of my boys...and for the message of this slideshow.

Yes, everything is going to be alright. :)  These pictures demonstrate it.
 

Pictures: How Bennett Has Changed In 2 Years



Birth - September 30, 2010


1 Month Old - November 2010



2 Month Old - December 2010


3 Months Old - January 2010


4 Month Old  - February 2010


5 Months Old - March 2010


6 Months Old - April 2010


7 Months Old - May 2010


8 Months - June 2010


9 Months - July 2010



10 Months - August 2010


11 Months - September 2010


 12 Months - October 2010


18 Months - April 2011


2 Years Old - September 2011

 

Bennett's Eating

Tuesday, September 27, 2011

I put a call in to our CF Dietitian yesterday.  My question: "Is Bennett really ever going to eat??"

We are all trying to hard to get him to eat.  We are regularly feeding him with the behavior modification feeding protocol we learned at Our Children's House at Baylor.  We are in touch with them several times a month to find out ways we can continue to improve what we are doing.  But things feels so frustratingly  s l o w.

"Maybe, maybe," I thought, "Bennett isn't eating because he's just not hungry.  Maybe it is the Cystic Fibrosis keeps him from being hungry."

Day after day, meal after meal, toy after toy, we continue trying but it seems like Bennett is either staying the same or regressing from any progress we made back in June.

"Is Bennett really ever going to eat??"  

This wasn't my first time to ask this question...and it won't likely be my last.  But asking it to the dietitian yesterday was my effort to reassure myself all of this effort will be worth it in the end.

Her response? "I can't tell you if it's worth it or if Bennett is ever going to eat."  But she said, "the one thing I can tell you is you are doing everything you can."

The dietitian explained what I had heard many times before: every Cystic Fibrosis patient is different.  Could he gain a greater sense of hunger at some point?  Possibly.  Will he never fully gain the skills and desire to eat?  Maybe.  We just don't know.

"Is Bennett really ever going to eat??"
I want the answer to this question.  I want to know all of the effort we are putting in matters.  I want to know that his eating battle is a one-time thing and something that will eventually go away.  But I am becoming less and less convinced that this will be the case.

Will we end up having to return to tube feeding him full time?  Bennett hasn't significantly lost weight yet but he's not gaining either.  So, we are just continuing to watch and wait.

Honestly, I haven't really envisioned what it would look like to have a grown up child who never really eats.  What will it be like at school?  What will it be like with his friends?  I won't resign ourselves to this quite yet.  But as time goes on, the less hopeful I become.  We are doing everything we can.  And if this doesn't work, I'm not sure there is anything else we can do.

But as the CF Dietitian reminded me on the phone, "it's hard as a Momma to have a child who doesn't eat.  But as long as he's healthy and happy, that's really all that matters."

She is right.  I'm sorta bummed that things are different in Holland.  But I must remember that just because something turns out differently than I expected, doesn't necessarily mean it's bad.

We are on month 4 of our one year commitment to carry out the methods at Our Children's House at Baylor.  We will continue our efforts and re-evaluate whether this is working in June 2012.  We have a long way to go still so things could change.  But I did need a bit of a "pick me up" from our conversation with the dietitian.  I feel like I got it.  Only 8 more months of this to go!

My Birthday

Monday, September 26, 2011

Thank you to Margaret for my beautiful made-from-scratch birthday cake!

Bennett and I share a birthday month, which I think is special (especially since Brian and Oliver share a birthday month, as well).

As I anticipate Bennett's upcoming birthday, I can't help but mention that I had a wonderful birthday.  Brian and I enjoyed a beautiful evening in Austin all on our own.

Birthdays are special in our family, particularly in light of having a child who has been told his birthdays are limited.  The reality is all of our birthdays are limited, it's just that most of the time we don't have to think about it.

We consider having a child with a limited life expectancy a great gift as it reminds us to live every day to the fullest.  While it's hard to add another candle to my birthday cake because it means I'm a year older, I consider it a blessing to have been given another year to enjoy the life I have been given.

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full. John 10:10b

Dada, finally!...and Bennett's favorite word.

Friday, September 23, 2011

Bennett has finally learned to say Dada, much to Brian's delight!

Like his big brother, Bennett's language skills have been the last to develop but they are coming right along.  He has a few words but mainly communicates through pointing and random sounds. 

He does, however, have a favorite word, a word which he loves to repeat all day long.  Can you guess whose name it is?

Mack! 

Bennett's favorite "Cars" character is "Mack."  Bennett watches the first 20 minutes of Cars every.single.day twice.per.day (so, therefore, so do the rest of us!).  This is the only movie Bennett wants to watch while he does his twice daily Vest treatment and nebulizer medications. 

In the second half of the first 20 minutes of the movie, Lightening McQueen loses Mack the truck and drives off to find him.  For like 3 minutes, Lightening just keeps calling out for his friend: Mack?!  Mack!  Mack?!

So, all day long, we hear: "Mah!  Mah!?  Mah!?"  It's pretty funny.

Other funny things he says are "Mama Mama Mama Mama" (reciting his favorite book, "Mama Llama mad at Mama") and "Bo Bo BoBoBo" (the song, "Row, Row, Row your boat)

Bennett is starting to show fewer and fewer signs he is a baby and more and more signs he is a big boy!  As much as we have enjoyed him as a baby, it's thrilling to see him so capable, happy and healthy as an up-and-coming preschooler!

Portrait Previews

Tuesday, September 20, 2011

Yesterday, Khimberly at Snaptastic Shots took portraits for Bennett's upcoming second birthday. 

Khimberly is a talented photographer who I reached out to this Spring shortly before this year's Waco Cystic Fibrosis Great Strides Walk. It was then that I learned that Khimberly has a personal connection to Cystic Fibrosis.  Knowing both of our families have suffered from the pain of this disease, Khimberly and I both immediately felt a special bond that will last a lifetime...which is one of many reasons why her taking Bennett's portraits mean so much to me. 


Bennett LOVES firetrucks, which was why I was more than delighted when Khimberly suggested that we take portraits of Bennett in front of a real.live.firetruck!!!  Both boys were ecstatic!

Khimberly was so patient with me during our photoshoot and reassured me several times that she wanted to help make the session low stress.  I was especially thankful for this as I wanted to make sure Bennett got his feeding and medications on time, which is hard to do when we add something new to our schedule.  Her laid back personality and attention to detail gave me such confidence that I could focus on Bennett's needs first.  So, as beautiful as these pictures came out, I can't say enough about the photographer who took them!!!


I love this picture as it captures what I witness on a daily basis.  Oliver and Bennett both have incredibly gentle personalities and truly love each other.  They rarely fight and love to play.  I am so glad that Bennett has Oliver.  And I am equally thankful that that Oliver has Bennett.  Bennett draws Oliver out in both disagreements and play.  And Oliver teaches Bennett how to be a peacemaker.  I'm so glad they are brothers.

These are just three of the pictures Khimberly took.  I can't even wait to get the rest!!!  Thank you, Khimberly, for documenting my sweet boys. 

The Cost of Pulmozyme

Saturday, September 17, 2011

And you thought that twelve hundred vibrating vest was expensive?!?
Just wait...

Last week, Brian went to pick up Bennett's Pulmozyme from our local pharmacy.   Pulmozyme is a special medication the pharmacy has to order, so we had been waiting for it to come in.

Brian brought in the medicine home before the chaos of bedtime (which starts at 6:30pm and doesn't end until 9pm!).  He put the medicine on the counter where it stayed until around 1pm the next day when I happened to see it while cleaning up.

I started to move the box to put away when the words "KEEP REFRIGERATED" in bright red print on the box caught my attention.

I panicked.  Was the medication supposed to be refrigerated?  Should I have known this?  Was the medicine cold when we got it and I had not realized?  Most importantly, was the medicine ruined??

I made a quick call to the pharmacist, who, frankly, didn't know what would happen if we left it out.  She offered to call the pharmaceutical company to find out but in passing said, "I know it's a very expensive medicine so if it's ruined, we'll probably have to work with the insurance company about what to do next."

The thought of re-buying the medicine had not occurred to me...or even to look at how much Pulmozyme originally cost.  I was shocked to find this medication is not just expensive, it's insane!!  Turns out that the original (before insurance) price is $1248.00 for a month's supply!!

Holy macrol!  My heart started beating fast.  If the medicine was ruined, I had no idea how we could have forked over that much money to re-buy it.

Thankfully, the pharmacist called me back shortly afterwards to let me know the medicine was ok for 24 hours as long as temperatures didn't reach over 83 degrees, which was great news! 

(I remember thinking when Bennett was born, Cystic Fibrosis is going to be an expensive disease.  But I can't even hardly fathom how that child is breathing in and out a $1200+ medication twice daily.)

It serves as a reminder to me that when we are raising money for a cure, we are also raising money for such life-saving but expensive medications.  I am so thankful for Pulmozyme.  And I'm equally thankful that I found that medication only 5 hours before it would have been unknowingly ruined!!

Pulmozyme and Throat Culture Results

Tuesday, September 13, 2011

Bennett started Pulmozyme a few days ago.  He has handled it well. 

Our plan was to introduce Xopenex (a medication similar to Albuterol) first.  Bennett has gotten pretty used to wearing his nebulizer during Vest time.  So, when we thought he was ok with Xopenex, we introduced Pulmozyme.

Pulmozyme has been known to burn and taste/smell bad.  So, we had expected that Bennett would buck against us.  He has recently shown resistance to putting on his nebulizer, but we just have to remind him that as the parents, we are in control.  We love him too much to allow him to suffer at the hands of Cystic Fibrosis. 

It's hard to "punish" him for not complying with his medical regimen but we have no choice.  It's for his best benefit.  I love how Dr. Phil says that a parent's job is to "bring a child from childhood to adulthood as intact as possible."  I try to remember this is my job with regard to Cystic Fibrosis, as well.  I want to bring Bennett from childhood in to adulthood as healthy as possible.  What he does with his life and his health from adulthood on is his decision.

Also, Bennett's throat culture results came in on Friday.  Everything continues to look good in the way of Bennett's lung health.  He has Staph in his lungs, which is common for CF patients.  But, at this time, he has no known bacteria causing serious havoc in his lungs.  We are treating the Staph with a low dose of antibiotic, which he will stay on for the rest of his life.

My own story of September 11.

Sunday, September 11, 2011

:::EDIT: This post is ridiculously long.  Forgive me, like most of this blog, it's more for me than for anyone.  Today, I simply wanted to document my own memories and 9/11 experience.:::

I haven't spent much time focusing on the significance of this date.

(I did that alot several years ago.  About five years ago, as a request for my birthday, Brian gave me a beautiful picture book and two DVDs of news coverage from 9.11.01.  For whatever reason, I was highly interested in what happened today a decade ago.  I spent hours and hours scouring the internet and reading the ins and outs of what happened that day.  I have watched these videos numerous times.  I have been wrapped up in the awful and awesome story of what happened on 9/11.)

But today, I let all of this pass me, without giving much attention to it.

Maybe I will regret that I didn't soak in the significance of today, the tenth anniversary of September 11th.  But, I believe, there will be many more 9/11 remberances in the future...and calling up grief from this life-changing day today is, frankly, too close to the recent grief I have felt from our own personal day that forever changed our life as we knew it.

But I can't allow the day to pass without at least documenting my memories of this day ten years ago...

I remember it being incredibly wild to experience.  I was in college at the time.  I was in my junior year.  I had just woken up that morning and was getting ready for class when I flipped on the Today Show like I always did.  I saw the anchors talking about a random fire coming from one of the World Trade Center buildings.  Matt or Katie were saying they thought a plane had hit the building.  I called my mom because I knew the situation was breaking news and I wanted her to know about it.

My mom and I were on the phone when I watched, in horror, another plane hit another building.  I couldn't believe it.  My mom and I sat on the phone in shock.  It was evident that the Today Show anchors had no clue what was going on, which made what I was watching more frightening and more compelling.

We were watching when the towers fell.  I vividly remember Matt or Katie mentioning that it looked like one of the towers, which was on fire, was leaning to one side.  And then, again watching in horror, I watched the towers begin to crumble into pieces.

Not fully realizing the importance of what I was seeing, I continued getting ready for class and eventually hung up with my mom and headed to campus.  While class was held, it was evident that the only thing people wanted to talk about was what they had seen that morning. 

Like most all Americans watching that day, it was all I could do not to walk away from my TV.  This was the first time "crawlers" at the bottom of the TV began rolling regularly.  This was when terrorism became the new buzz word.  And this was when plane travel began to change for ever.

But my memories of 9/11 continue past that day.

I remember, just a day later, observing the mass panic to fill up cars with gas.  I was there too.  I wasn't in panic, I merely needed gas.  So I was forced to wait in line behind the scores of cars lined up at the Texaco trying to fill their tanks (a "worse case" preparation).

While waiting, I listened to our local news coverage of the aftermath of 9/11.  I very vividly remember hearing a local TV anchor interview a terrorism expert from the University of Missouri.  The anchor said, "So, rumor has it that there is a local connection to terrorism right here in Columbia.  Is this true?"  The local terrorism expert denied this and said there was nothing to worry about.

But something within me thought, "there is a hint of truth to every rumor.  I bet there is something there."  And the gears in my head began to turn.

I was a junior at the University of Missouri and an active reporter for the local NBC affiliate at the time.  I began researching furiously.  I went to the internet and found that, in fact, there was some vague mention in a reputable newspaper of a terror cell in Columbia, Missouri.  Through a series of phone calls (including one overseas), I tracked down the author of the article.

I went lit right into it with him, knowing he was likely a busy reporter who had no time for me.  I said, "listen, our town is in a panic!  I think it is irresponsible journalism to mention Columbia Missouri as being a place with terrorists and giving us no more information that that!"

He paused for a second.  My heart beat loudly in my chest as I waited for him to answer or hang up on me.

And then he said, "Tell you what, can I call you back?  I'm about to go on the set of MSNBC for an interview.  But I'll call you back as soon as I get off."

I sat there stunned.  I politely (albeit, sheepishly) agreed and hung up.  I had no idea I had called someone of any importance.

And then, I raced to my TV to find this international Terrorism Expert speaking to one of the MSNBC anchors.  If I was nervous before, I was certainly more nervous when I did receive a call back from the man (whose name I'll keep close to the chest, for now).  He was very kind to put me in touch with one of his sources.

This source was amazing.  He went on to give me alot more information about the Columbia, Missouri terrorist connection, which was in fact true.  The terrorist, who was long gone by now, had been mentioned in a Supreme Court case and was documented to have the satellite phone Osama Bin Laden used for the bombings of the American embassies in Kenya and Tanzania.

More information came from my source about a local muslim "charity" in Columbia called Islamic American Relief Agency, which was believed to have funneled money for the use of terrorism.   For many years, IARA defended itself, until years later the FBI came in and shut them down.

I shared my information about Columbia's terrorism connection in several news packages on TV.  It was by far my proudest news moment and my most hard earned news story of my short career as a reporter.  I was the first in the area to break this story on TV, which gave me great confidence in my love for investigative journalism.

I later went on to fall in love with my husband, and therefore, decided to put my TV reporter hat away.  But my effort to find the story was less about being a great journalist and more about my desire to make a difference after having seen such terrible sadness and loss on this day ten years ago.

Those of us who watched 9/11 unfold sat helplessly, unable to rescue those that seemed, on TV, within centimeters from us.  But this was my moment to try.  Sharing the story of terrorism that sat in our local town was my effort to expose the terrorism that lingered not too far from where we sat at watched 9/11 happen.

September 11, 2001 was particularly sad for me as I had just lived in New York a month before.  I had finished up an internship at CNBC and had several times visited the money district.  My friend and I had actually visited the World Trade Center just weeks before they towers fell.  We had wanted to go to the top to enjoy the view of New York.  But we ended up getting distracted by the mall that was in the basement of the WTC.  I have a last picture and a receipt from my experience there (I'll post when I can find it).  It's a bittersweet reminder of my own story of September 11th. 

How we're doing...

Friday, September 9, 2011

:::Edit: David starts radiation on Monday to get rid of the rest of his brain tumor!  Also, Leah, a sweet 3 year old in our community of friends received her long awaited heart last night.  Our prayers are with both of these families.:::

We often get the question, "how are you guys doing?"  Actually, It's usually more like, "how are you guys doing?"  I always appreciate that question because, most of the time, people really want to know.

My answer has changed over the course of Bennett's life.  But, for the last few months, it has consistently stayed the same: "Good.  We're doing really good.  And Bennett is doing particularly well!"

And there have been some recent changes in our lives that have helped us cope even better... 

First, Oliver has started school, which has been a blessing to both him and myself.  He gets an opportunity to meet new friends and learn new things.  I get the opportunity to spend more time with Bennett.

Second, we now have a sweet young woman who is helping us with the burden of caring for Bennett's most time consuming needs: his feeds and treatments.  Her presence and attention to detail has been a huge blessing to us and allowed us to focus on other things outside of Bennett and his Cystic Fibrosis.

Third, I have begun exercising.  For the first time since Bennett was born, I have begun exercising regularly.  Bennett's needs are so intense and time consuming that I have yet, until now, been able to work out (even get out) regularly.  So, I am very thankful that I am now able to begin the process of getting myself healthy as well.

Fourth, in addition to getting my body healthy, I am also spending designated time focusing on my heart.  I have begun counseling and have started processing all that has happened over the last two years, since we first learned of Bennett's illness.  This has been a very healing process and I am very thankful for it.

My counselor mentioned to me recently that Brian and I have been in "survival mode" for the last two years, struggling just to hang in there, unable to really deal with the things going on underneath.  I am very grateful that Bennett's health has improved to the point that Brian and I can begin to focus more on ourselves and our marriage so that we can gain strength to prepare for what lies ahead.

I am so appreciative for these little changes in our lives.  I think these changes will help me be a better mother and increase my capacity to handle the challenges we may run into down the road.  Because I know life with CF is very unpredictable, I am acutely aware of the blessing of good health and peace.

We really are doing really well!

Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.   James 1:17

Backyard Swimming

Tuesday, September 6, 2011

It's taken all summer but I finally broke down and bought one of those cheap plastic pools for the boys to play in in the backyard... right before the scorching heat began to wane. 

I hestitated to buy a pool earlier in the summer because our backyard doesn't have any shade for the boys and because plastic pools often kill the grass and easily become a haven for area bugs looking for water.  But I couldn't resist Oliver's ever-so-sweet and polite request to buy one that was recently on sale (besides, the Texas heat has already fried our grass so that's one less thing to worry about).

Unfortunately, I didn't realize when I bought this cheap plastic pool, what I saved in price, I lost in functionality.  The pool I bought was one of those flimsy ones that has to be on a flat surface, otherwise it doesn't stand up.   Our yard is ever so slightly on an incline so the pool barely held up enough to hold the water.  Thankfully, the boys didn't seem to mind.  Brian placed the pool as close to the house as possible to give the boys some shade from the sun.


Bennett *loves* swimming!  He loves the bathtub and the pool - anything where he gets to pretend he's a fish!

 
Our "thinker" eldest child most enjoyed playing in the water by watching it flow off the side of the pool.  Glad to know my lack of reading the back of the box before my final purchase decision provided him a science experiment!


Seeing Oliver and Bennett enjoy the water in the sun melted my heart.  I don't really know why I cared about grass, shade, or bugs.  Seeing the kids play in the water in the backyard made this flimsy plastic pool a pretty good decision after all!